Since I’ve been back from Bali, the hours of sleep I have been having have been increasing steadily.

Now, don’t get jealous – I don’t wake up feeling refreshed; in fact, I think I hurt more than ever. I wake up a number of times and try to move but it hurts so much that I end up falling back to sleep. I really don’t know what I’m doing while I’m asleep but…

That is the way my bed looks before I go to bed…
And this is the way my bed looks when I wake up!

You know how sometimes we say that we wake up feeling like we ran a marathon? Maybe I am!

Every night I take 150mg of Lyrica (I don’t think that helps me sleep as I take the same amount in the morning) and just 2mg of Valium, which is supposed to relax my muscles enough for them to rest while I am sleeping. I guess that’s not working.

So I really have no idea why I’m ‘sleeping’ so much. I do know that I keep putting off my bedtime because I really don’t want to wake up…in pain.

I find that the more tired I get, the more I mix up words and lose my train of thought. But, there are ways to help yourself manage it. (Sorry! No cure here.) Why not try some of the following tips:

1.      Write it down.

Making a note helps you get a thought more firmly in your mind. You might want to keep a calendar or notebook with you so you can write things down while you’re thinking of them.

2.      Get treated.

Other symptoms that commonly go along with FM – including depression, pain, and lack of sleep-can also make it harder to concentrate and remember. Medical treatment for these other problems may also help your memory.

3.      Stay active-mind and body.

Keep your mind working by doing puzzles, reading, or seeing a play to get yourself thinking. Moderate physical activity can increase your energy and help clear the fibro fog. Talk with your doctor or physical therapist about an exercise program that is right for you.

4.      Find ways to help you focus.

Try breaking tasks up into small steps. Don’t take on more than you can comfortably manage, so you’re not trying to do too much at once. When you do start a task, avoid distractions that can keep you from concentrating. A loud radio or TV, or trying to work where other people are talking, can make it hard for you to focus on what you’re doing. Try working in a quiet place when you are trying to concentrate or remember, so you can give the task your full attention.

Then there’s my trick:

Albeit a band-aid solution, to stop forgetting things at home, I have attached this vine to the entry of my small hall leading to the front door. Then I use clothes pins to clip those things, which I have to remember to take with me, to the vine.

I hit my head on these as I go to my front door. And they are still in a safe place – just not one of THOSE places where I’ll forget them.

Anyone got any other tips?

Related articles

• Fibro Fog Explained? (fibromodem.wordpress.com)
• What is Fibro Fog? (lifeinthefibrolane.wordpress.com)
• The Curse of Fibro Fog (fibrofella.wordpress.com)

Today I saw my pain management specialist (from Rehab), in hopes that we’d be moving forward with the lignocaine and ketamine infusion. (Remember?)

Much disappointment followed as he wants to wait until I see the surgeon about my liver and gall bladder (just in case he says something like: To the hospital STAT!). It is totally understandable (his reasoning, I mean) but I am SO ready to try this treatment, especially after looking at some of the research done.

In a study completed in Sweden, pain intensity, muscle strength, static muscle endurance, pressure pain threshold, and pain tolerance at tender points and control points were assessed in 31 patients with FM, before and after intravenous administration of morphine, lignocaine, and ketamine.

The three different studies were double-blind and placebo-controlled:

• The morphine test did not show any significant changes.
• The lignocaine test showed a pain decrease during and after the infusion!
• The ketamine test showed a significant reduction in pain intensity during the test period. Tenderness at tender points decreased and endurance increased significantly, while muscle strength remained unchanged.

A-ha! This is what I want! And I want it NOW!

So what is this treatment?

What is the Purpose of the lignocaine infusion?

Nerve pain can occur due to many causes. This can cause burning; shooting pain that is difficult to treat. The circulating local anaesthetic reduces the activity of the damaged nerves and may reduce the pain. Here’s hoping!

What is a Lignocaine infusion?

The treatment involves infusing the local anaesthetic lignocaine into a vein that is usually inserted in the back of the hand. (Uh-oh! Really don’t like that part!)

How is the Infusion Performed?

Multiday (5-7 days) infusions are usually performed in a monitored bed in the high dependency unit.  The infusion is attached to the needle using a piece of tubing attached to a pump.

How long does the Block Take?

The multiday lignocaine infusion for neuropathic pain or headaches is usually run for 7 days.

Will the injection hurt?

The only discomfort will be the small needle being inserted in the hand.

What is ketamine?

Ketamine is used as an anaesthetic agent in high doses both in human and veterinary medicine; it is also known to be abused as a recreational drug. In smaller doses, it can be used to manage acute and chronic pain especially in those where the pain is so severe it is not controlled by other drugs.

How will ketamine help?

• ‘Pain-Relief: In the chronic pain population, ketamine is a useful drug, although it is not effective in every patient. The pain relief that can occur with a “short ketamine infusion” often “breaks the cycle”, and often lasts considerably longer than the infusion.  In the case of nerve pain or complex regional pain syndromes (CRPS), ketamine has been reported to produce remissions in the pain and other symptoms lasting many months.
• Other: Ketamine can reduce withdrawal symptoms and make it easier to cope with reduced doses of other analgesics. There is emerging evidence that ketamine has an antidepressant action and that it can reduce compulsive/obsessive behaviours.

Double bonus on this one – hopefully, it will short-circuit my brain into causing me less pain, while helping me withdraw from codeine (AND while I’m sedated, I figure it might help to quit smoking, too!)

How is ketamine administered?

The ketamine is usually given either by an intravenous (we’re going this one!) or a subcutaneous infusion.

What happens when the infusion begins?

As Ketamine can cause side-effects, you will be given a premedication of clonidine and an anti-nausea medicine. The infusion will be started at a low dose and gradually increased at intervals depending upon your progress and how well you tolerate the drug until the target dose is reached.  A nurse will be checking your breathing, heart rate and blood pressure regularly. The nurse will also be monitoring Pain scores and Sedation (sleepiness).

So, next week, I get to see the liver/gall bladder guy then, the first available appointment with the Pain Management Specialist is November 7^th.

Hello? I’m ready now – I even bought my hospital pajamas already!

*** For some interesting statistics that I discovered while researching, click here.

Related articles

• Looking for a Silver Lining… (fibromodem.wordpress.com)
• Yale scientists explain how ketamine vanquishes depression within hours (news.yale.edu)

1. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about fibromyalgia, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
2. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
3. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
4. Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
5. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
6. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
7. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
8. More support groups will be formed as a result of more people realising that they have fibromyalgia.
9. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.

Related articles

• Facts and Figures (fibromodem.wordpress.com)

I read this post by Jen Reynolds (Creator and founder of FibroTV.com) in FibroTV Blog and thought it might get you thinking about how YOU manage your pain:

Realistic Expectations With Pain Management When You Have Chronic Pain

Pain management is essential when you have a chronic pain condition. Unmanaged pain can rip your life apart in all areas. When most people think of pain management the first thing that pops in their head is pain medication or medication to control the pain. There are many other options than just medication and you can also use an integrative approach to manage your pain by using medication and non traditional treatments  for pain management. Having realistic expectations with pain management is also very important. When you have chronic pain nothing is going to take away all the pain and if you keep reaching for that you are setting yourself up for a lot of frustration, discouragement, and disappointment. The only way to resolve pain completely is to address the underlying cause if at all possible.

Related articles

• Pain Management Without Drugs (everydayhealth.com)
• Physical Therapy for Pain Management (everydayhealth.com)

On average, the patients with FM displayed inferior performance compared with controls based on accuracy and response time. These differences were statistically significant, due to a lot of medical gobbledygook (as follows, if you can understand it):

During n-back tasks, researchers utilized functional MRI to study activated and deactivated brain regions. The researchers also found significant relationships between the FM group and the controls when using the Beck depression inventory and Beck anxiety inventory as covariates (P<.01 for both).

Between-group analyses showed that within the working memory network, the inferior parietal cortex was associated with pain ratings that were mild (r=0.309, P=.049) and moderate (r=0.331, P=.034). Two-sample between-group analysis showed significantly higher activation in the controls than the FM group in the ventrolateral prefrontal cortex (VLPFC), the thalamus, middle temporal cortex and inferior parietal cortex (P<.05, FDR-corrected for multiple comparisons at the voxel level). The comparison also showed the left dorsolateral prefrontal cortex, right VLPFC and right inferior parietal cortex were related to depression and anxiety ratings.

Basically, FM patients showed reduced activation in several brain regions which may be associated with impairments in maintenance and manipulation of working memory. The working memory deficit may result from both pain itself and depression and anxiety associated with pain.

1. Forty-one women were enrolled in the study — 19 with FM and 22 healthy participants. The mean ages of the patients were 38.73 years and 38.27 years, respectively. The control group included volunteers who were screened for chronic widespread pain, generalized weakness, sleep disturbance and specific tender points. The FM patients were recruited from outpatient rheumatic clinics at five hospitals in South Korea. The mean disease duration for FM was 39.41 months, and those patients showed average tender points of 13.37. Seven FM patients reported taking antidepressants: six on 75 mg pregabalin once daily, and one on 75 mg pregabalin and 25 mg milnacipran once daily.

My stomach is NOT my friend! I am lucky enough to swing from constipation to diarrhoea in less than the blink of an eye.

Research findings from the Walton Centre in the UK report that the small bowel in FM sufferers (and when it comes to IBS, we are definitely sufferers!) shows overgrowth of abnormal bacteria. The study demonstrated an increased intestinal permeability that produces increased hyperactivity of the intestines. Intestinal permeability means abnormal substances gain access to the body and alter its immune function.

Constipation

According to reports in the Journal of Psychosomatic Research, constipation or infrequent stools occur in 30% of FM sufferers. Constipation is defined as having a bowel movement less than three times a week. Some individuals complain of abdominal pain and straining to move the bowels in conjunction with the constipation.

Diarrhoea

Clinical Nurse Specialist describes diarrhoea occurring in up to 90% of FM sufferers. Individuals describe a pressing urge to move the bowels as well as passage of unformed stool. Diarrhoea occurs along with high levels of anxiety. Reports in the Journal of Nutrition indicate ingestion of probiotics decreases the symptoms of diarrhoea.

Fecal Incontinence

The Journal of Psychosomatic Research reports 2% to 7% of individuals with FM report uncontrolled passage of stool. This fecal incontinence transpires frequently in concurrence with diarrhoea and creates major problems in daily life. If it has ever happened to you, you never want to leave the house again (or, at least, without knowing where the closest toilet is!)

gastroesophageal Reflux Disease

According to the Journal of Psychosomatic Research, gastroesophageal reflux disease describes the condition where food travels backward from the stomach into the oesophagus. The oesophagus is the tube connecting the mouth to the stomach. Characteristic symptoms of gastroesophageal reflux disease include epigastric pain, a sensation of fullness, and heartburn. gastroesophageal reflux disease and other intestinal problems occur in 50% of FM sufferers.

I have tried some (very expensive) probiotics without any improvement. Basically, I make sure that I have a constant supply of Imodium, Buscopan and Durolax on hand, at all times.

Has anyone found something that works (not just on symptoms)?

Related articles

• Managing IBS-Related Constipation (everydayhealth.com)
• How Fiber Helps Ease Constipation (everydayhealth.com)
• What Does IBS Pain Feel Like & My Tips For Living With IBS (femaleimagination.wordpress.com)

My friend, Thais, in her own words, is OCD – total neat freak!

Today, after doing some shopping and while I was splayed across the couch trying to recover, we had a discussion. We were talking about how there was too much to do – how bags of different types of shopping are accumulating on the floor of my kitchen or bedroom, after being dumped there at the end of a trip out.

She said to me that, originally, she couldn’t understand how I could handle it. But now, after seeing how I can go out with her all excited and eager, then suddenly watching the life sucked out of me as our day goes on – she gets it (or, in her words, gets it as much as anyone without FM can!)

Thais is going away at the end of the month, for at least 6 months. What ever shall I do without a (non-cyberspace) friend to understand me?

I will miss you so much, Thais. Thank you for all that you do with me (and for me); and for bothering to maintain our friendship – it means more than I can find words for…

I have no idea how or when my Fibromyalgia developed. I do know that halfway through my studies, I developed depression. (Was this the first sign?) The next four years were spent going to doctors because I suffered from joint pain, headaches, exhaustion, insomnia – sound familiar? Finally, in November of last year, my GP sent me to a rheumatologist because my wrists and ankles were killing me and there was nothing wrong (supposedly). I was sick and tired of doctors. I was sick. And I was just plain tired…all the time.

All of this sounds like many stories I have heard from other sufferers. In a patient survey that looked at the impact of FM and a patient’s journey to diagnosis, the average time it took for an actual diagnosis, from the first time the patient presented to a physician about their symptoms, was 2.3 years. The survey involved 800 patients and 1622 physicians in France, Germany, Italy, Mexico, The Netherlands, South Korea, Spain, and the UK. Most countries had an average range of 2.1 to 2.7 years. The exceptions were Spain (3.7 years) and South Korea (0.6 years).

So, what takes so bloody long?

Firstly, patients wait a significant period of time before visiting a doctor, adding to the prolonged time to diagnosis. The average time taken to present to a physician was 11.1 months (range across countries 4.6 months in the UK to 18 months in Mexico). In total, 29% of patients did not present to a physician for their symptoms until at least 6 months after the symptoms were first experienced.

Then, patients typically present with a multitude of symptoms – which many doctors find difficult to correlate with FM, resulting in a delay in diagnosis and eventual management. The survey stated that ‘helping clinicians to diagnose and manage patients with fibromyalgia should benefit both patients and funders of healthcare.’ (And this is the reason we need to work so hard to promote awareness!) Patients had to visit an average of 3.7 doctors before receiving a FM diagnosis.

Overall, 59% of patients agreed that they had found it difficult to communicate FM to their doctors. Patients’ overall perceptions about some aspects of their experiences with physicians and FM were captured. Approximately three-quarters of patients reported that doctors needed to spend more time and to focus more on symptoms to diagnose FM.

Basically, the most significant result of this survey: patients had been experiencing FM symptoms for an average of 6.5 years before diagnosis!

The survey also showed that the association between the duration of symptoms and worse response to treatment confirms that earlier diagnosis and treatment may lead to improved treatment response and reduced impact of the condition.

As such, this kind of delay is unacceptable and frustrating; and further evidence of our need to increase our efforts in spreading awareness of this debilitating condition.

What are you waiting for? Start spreading!!!! 

It’s not unusual for people with any chronic illness to complain about having problems with their sex life. But a healthy sex life is important for many reasons:

1. Not only does sex strengthen an intimate relationship, but sexual intercourse boosts endorphins. Those are the body’s natural opioids that help decrease pain and increase well-being.
2. From my point of view (and many single FM sufferers), you are very lucky to have one – so you need to keep it up!

Talking openly with your doctor and following a few practical tips can help you resolve problems associated with FM, pain, and sex. Then you can begin to enjoy this aspect of your life again.

What Causes Loss of Libido With FM?

Some of the medications, such as Paxil and Zoloft, used in our treatment may cause reduced sex drive. If you take an antidepressant and have problems with libido, talk to your doctor. A simple change of medication or a reduction in dose may improve your sex drive and allow you to enjoy your relationships more.

Further, for some of us, having to deal with the uncomfortable symptoms of FM, including the ongoing pain, fatigue, anxiety, and stiffness, is difficult enough without thinking of being physically active with sexual activity. Learning to self-manage these symptoms with medications, exercise, and lifestyle habits may help to boost your sex life.

How Can I Have Sex if I Hurt all Over?

Some FM patients give up romantic aspirations for fear of further injury and pain. Yet being intimate with your partner is still possible. With FM pain and tender points, you need to work with your partner to find the most comfortable position during sexual intercourse. For instance, if you have FM with low back pain, you may find that having your partner on top or lying on his or her side is most comfortable for you. Or, if you’re a woman who has FM and hip pain, you might use a pillow between your knees to stabilize your body during sexual intercourse.

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(FYI: In the next issue of LIVING WELL with FIBROMYALGIA, there will be a ‘sealed’ Valentines’ Day section, showing specific positions (don’t worry, they are NOT photos of me!) that may help with different pains)

Just because you have always had sex in a particular way does not mean that’s the only way. You need to be patient, take it slowly, and find the best sexual positions that allow you to be intimate without causing further pain. Keep in mind, there is no right or wrong way to be intimate with your partner. It may be time to bring out that 1970s copy of the Karma Sutra that you have hidden at the back of your bookcase or night table – find the positions that work for you.

Can Soaking in a Warm Bath Before Sex Help?

Moist heat, including soaking in a warm bath, can help ease FM pain and may allow you to enjoy sexual intercourse – or any exercise – without added pain. Heat increases blood flow to the site and decreases stiffness.

When using moist heat, make sure it is not too warm or you can burn your skin. You might soak in a warm bath for at least 15 minutes before sexual intercourse or other physical activity to get the full benefit. You may also soak in a warm bath after sexual intercourse or other physical activity. Other popular types of moist heat include a warm shower (sit on a chair, if needed), warm whirlpool or hot tub, heated swimming pool, and a moist heating pad.

Is Stress Linked to Sexual Problems and FM?

Stress may trigger FM symptoms. Yet managing stress may help control your symptoms and balance your daily life, which can boost your libido. Stress management may include a combination of exercises, relaxation techniques (deep breathing or meditation exercises), a good sleep routine, and proper nutrition.

Exercise (including sex) releases endorphins, which are the body’s natural stress-fighting hormones, so any type of physical exercise is a good stress-control measure. Relaxation therapies such as deep abdominal breathing, visualisation or guided imagery, and meditation are also helpful in managing stress.

What Else May Help my Sex Life With FM?

If you have FM, talk to your doctor and see if medications can boost libido and/or sexual performance. Improving your overall health by treating any other medical problems may also help.

Related articles

• What Could Be Hurting Your Sex Life (everydayhealth.com)
• Libido Supplements and Vitamins for Sex – Do They Work? (everydayhealth.com)

The medical literature contains numerous reports indicating that women report more pain than men for one or another particular disease, noted Butte, a professor of systems medicine in pediatrics. “We’re certainly not the first to find differences in pain among men and women. But we focused on pain intensity, whereas most previous studies have looked at prevalence: the percentage of men vs women with a particular clinical problem who are in pain. To the best of our knowledge, this is the first-ever systematic use of data from electronic medical records to examine pain on this large a scale, or across such a broad range of diseases.”

While the overall results tended to confirm previous clinical findings — for example, that female fibromyalgia or migraine patients report more pain than their male counterparts — the study’s results come with a few caveats.

First, the investigators made the assumption that patients’ pain hadn’t already been treated—for example, that they hadn’t already self-medicated with over-the-counter painkillers — by the time they showed up in the emergency room, doctor’s office or neighbourhood health clinic (or, equivalently, that the men and women were equally likely to have done so).

Other possible confounders include the setting in which pain was reported, Butte said. “Will an 18-year-old male report the same pain intensity with or without his mom present, or in the presence of a male vs. a female nurse? We can’t be sure.” But the sheer size of the study probably washes these concerns out at least to some extent, he said.

The third caveat is perhaps the most controversial. “It’s still not clear if women actually feel more pain than men do,” said Butte. “But they’re certainly reporting more pain than men do. We don’t know why. But it’s not just a few diseases here and there, it’s a bunch of them — in fact, it may well turn out to be all of them. No matter what the disease, women appear to report more-intense levels of pain than men do.”

I have always tried not to argue with my parents – they are my parents and deserve respect – but this is getting crazy. Mostly, instead of arguing, I say ‘okay’, hang up and burst into tears. Then, of course, I have a flare.

My Father is currently in rehab (funnily enough, the same place that I go). He was transferred there after a back operation. I had to call the hospital to find out that he had been transferred!

Our last phone call was Monday night (the eve of the Day of Atonement, in the Jewish religion), when he called me to tell me off for something else (you’ll hear about it in a minute). Yes, I said ‘okay’. Yes, I hung up on him. Yes, I burst into uncontrollable tears. I just want to have a normal father/daughter relationship with him (is there such a thing?)

On Friday morning, he phoned me while I was asleep and left a message. I don’t want to return the call just to have another argument and another flare, so I wrote him a letter. I realised that this letter might end our relationship totally but I cannot handle it the way it is now.

This letter took me a couple of hours to compose and write (and cry about) – I wanted him to REALLY understand (WARNING: This is a very long letter):

Dear Dad,

You called this morning, when I was asleep, and I can’t decide whether I should call you back: every time we have a conversation, we have an argument. And every argument we have causes my fibro to flare (that is: every part of my body starts to hurt and this can last two to three days). I don’t know if it is worth it, as you don’t seem to think that I am worth it.

I do NOT try to upset you or Yvonne – I ALWAYS try to do the right thing (I was trained that way by my Zajda!) So, while I have your attention, I’ll let you know how I see our (yours, Yvonne’s and mine) relationship:

• Everything I say is wrong – either Yvonne gets upset by it, there and then; or you phone me later to admonish me.

You tell me that a lot of it is because I talk about Mum and that part of my family – but they are my life. I don’t go out very much and, if I do, it tends to be with Mum (she is the ONLY person who can be bothered to come get me and take me anywhere).

I am sick. I have been this sick for a whole year, yet I think that you have only visited me (maybe) four times. (One of those times was because you needed extra meds and another was because I begged you to pick up some food for me). You do not support any of my fibromyalgia awareness activities; in fact, you probably can’t even describe my condition. I have tried to get you to look at my blog so you can understand but you show absolutely no interest. I know that you are going through rehab now (and I hope it is helping and you are doing better) but I have been attending rehab for 3 months. The pain you are having now is the pain I have each time my body flares.

I have only one friend (Thais) who bothers to stay in contact with me.

So, yes, if you want me to talk about anything in my life, it is likely to include my mother and her side of the family.

• Then, I decide, for the sake of peace, I will just be quiet. I will attend any family dinners but I will shut up.

That doesn’t help, either. You phone me to tell me that I do not talk to Yvonne, the boys or her mother (I have nothing to say!); that I must include them all in my life and conversations.

• So, I try to talk to Yvonne when I call you at home and she cuts me off EVERY time with ‘I suppose you want to talk to your father’.

Well, of course I do – what am I supposed to do then?

• The other day, when I left the hospital and as I was getting in the car, I thought to myself ‘Shall I call Yvonne and tell her that I’ve seen you and that you are sleeping’ so she didn’t need to rush over.

No, I won’t, and I started the car and drove away. Then I thought that, if I had seen Uncle Jack in hospital (recently), I would call Mum in that same situation, as knowing she didn’t need to rush to see him would most likely make her life easier. So I stopped my car by the side of the road and called Yvonne. The conversation went something like this:

S: Hi Yvonne, it’s Simone. How are you?

Y: Are you there now?

S: I just left. Dad is sleeping at the moment.

Y: Well, I’m rushing around. What did you want?

S: I just wanted to let you know that Dad was asleep so you didn’t need to rush there.

Y: Your father and I are communicating just fine, thank you. Is that all?

S: I also wanted to let you know about Danny’s on the corner.

Y: I know it. I don’t think your father is up to walking to a restaurant.

S: I just meant that maybe one time you could pick up a nice lunch to have together…

Y: Look, Simone. Everything is fine. We are all organised. You don’t need to worry. Was there anything else?

S: No, I guess I’ll see you another time.

Now, I remember that conversation very well because I was really upset afterwards. I did NOT tell Yvonne NOT to visit at the hospital, yet you phoned me to tell me that Yvonne can come and go as she pleases. I KNOW that! I just wanted to let her know that she didn’t need to rush around, to take some pressure off – which, obviously, didn’t work.

• After your phone call to me, where I just said okay and hung up, I fell apart. I can’t even describe the type of tears that were pouring out of me (and I am still very upset just writing about it).

I feel helpless and hopeless, as I can do no right.

I get it, Dad. You and Yvonne are a couple – I KNOW that. I have no problem with that – UNTIL it affects our (yours and mine) relationship.

I feel like you are not allowed to spend any time with me – I am your daughter. Yes, I am over 18 or 21 or whatever…but I will always be your daughter. You seem to forget that, or maybe, take it for granted.

I understand that Yvonne has a problem with talking about anything to do with your previous life – but, hey! you’ve been together for 20 years; perhaps it’s time for her to get over some of her insecurities? Especially as it feels like I am part of the life she wants you NOT to be a part of, anymore.

I understand that you have to compromise because you live with Yvonne. But, sometimes Dad, you need to choose me – I am NOT always in the wrong!

Perhaps you’re scared, at the moment? You’ve just had an operation. You can’t work. You can’t do very much for yourself. You don’t have a home of your own. You MUST get along with Yvonne – is that any way to live? And alienating all your own (not just Yvonne’s) friends and family is not leaving any doors open. Anyway, that’s just my psycho-babble – I could have it very wrong; but I’m looking for excuses for you and your behaviour towards me.

I CANNOT deal with stress – for some unknown reason, my body has rebelled against me and won’t let me lead a normal life; so yes, I know that stress is part of life, but I can’t handle it and need to avoid it.

So, I still don’t know if I want to return your phone call. What do you think? 

I love you

His response came in the way of a text:

1stly before delivering a letter u should consider the ramifications. And then have the guts to deliver it in person. Any time u want 2 discuss all the points ring me. Until then look in the mirror.

I guess he really didn’t get it, did he?

Related articles

• Day of Atonement (arnoldzwicky.wordpress.com)

I have nothing more to say (today).

was distributed September 1st.

I have periodically been sending the issue out to new subscribers.
The last time I will be doing this is September 30th, so…

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Firstly, some facts (this is not me feeling sorry for myself, just facts):

• I am single (read divorced and/or friendless depending on your situation)
• I am sick (with no cure on the immediate horizon)
• I have only one friend who actually visits with me
• I have no particular interests outside my home

So, I was thinking, is this my lot in life forever? Will I ever meet a prospective partner? How will I meet a prospective partner? Does he deserve a partner who is continually unable to meet her responsibilities? Okay, forget a partner, how about some new friends?

These questions sent my mind racing – I can’t drive more than about 10 kilometres before my arms, shoulders and head start to hurt; I can’t go to parties (even if I was invited) because the noise and other distractions are too much for me to handle; there are no clubs or groups in my area that I wish to join. So, what is a FM sufferer to do?

Why, take to the internet, of course! ‘How to meet new people’ was my search term:

Succeed Socially.com offered a list of places to meet people

• Through your friends, significant other, and other people you already know

This point obviously will not work for one in my situation

• Work

I am still unable to work

• Volunteering

As I am unable to be reliable in a work situation, I am unable to commit to volunteering. I used to volunteer regularly at a local legal centre – it was incredibly satisfying and I miss being able to help others.

• Classes

I go to my self-help hydro groups, where the closest person in age to myself is about 25 years older than me. They are a lovely group at Hydro but I doubt greatly that we have very much in common outside being ill and/or disabled.

• A club or organization

The appeal here is obvious. You join up and you instantly know a group of people who share a similar interest to yours. But what happens if you no longer have any interests? Other than researching fibromyalgia, spreading awareness about fibromyalgia and raising funds for fibromyalgia research. Kind of sounds like I should join or start my own fibromyalgia support group, right?  But, with this type of group, it would probably take all our efforts just to turn up to meetings, let alone maintain friendships outside the group.

• A sports team or league

Are you kidding?

• Through your religion

I am not religious. I believe in a higher being but I do not know of a public denomination which shares these same values.

• Through your kids

Another moot point for me

• Your living situation

Living in a large building with lots of other people your age around is better than being in a small place with no one who’s similar to you. Guess what my situation is? I live in a block of units (alone) where, currently, there is no-one with any similarities to me at all. How can this happen? (rhetorical question!)

• Your family

No real help there, although my grandfather (before he died) tried to set me up with a 71-year-old ex-doctor.

• At a party

Too much noise, too many people, just TOO!

• An individual sport

How many FM sufferers do you know who do a sport? And I’m not one of them.

• Online

Hmm…what would my ad look like:

SWF in chronic pain, with control freak tendencies, seeking understanding, compassionate friends with low expectations.

Would any of you answer that one?

There were a number of other suggestions but you get the idea…so, tell me, fibroMAGICians, what do you do?

Related articles

• Coping With Friendlessness (thewaveofthoughts.com)
• Poem about being a loner II (grannyslittleprojects.wordpress.com)

The average width of the liver is between 21 – 22.5 cms. The vertical height is estimated to be 15 – 17.5 cms. From the front to back, the organ measures between 10 – 12.5 cms The average weight of this body part is between 1.4 kilograms to 1.6 kilograms. The liver can be found below the diaphragm and in the right part of the abdominal cavity (exactly where I get my own very special kind of cramp).

My abdominal ultrasound found a lesion that is 6 x 4 x 4 cms (sounds huge, huh? But it’s only 1.9% of the liver) and it was unable to tell us what it actually was (other than a lesion). A lesion is any abnormality in the tissue of an organism (in other words ‘damage’), usually caused by disease or trauma.

So, off I went to have a CT scan (at a cost of about $300 to Medicare). A CT scan is a type of X-ray that takes cross-sectional and 3-dimensional pictures that are supposed to help the doctor make an accurate diagnosis, particularly when normal X-rays have not detected a disease. Guess what? It didn’t, so next I’m off to a Hepato-biliary surgeon who specialises in surgery of the liver, pancreas, gall bladder and bile ducts.

It’s quite depressing that we know this much about our body parts, medical terminology and specialties.  Or maybe it’s amazing – this time last year, I had never heard of Fibromyalgia…

I LOVE paying bills! Am I nuts? Or what?

Unpaid bills stress me out big time BUT the relief and sense of satisfaction, when I press confirm on the keyboard and wait to receive my receipt number, leaves me feeling back in control of my life.

Are you seeing a continuing theme here?

I NEEDED to de-clutter my house to feel like I was gaining control over my life…

I LOVE paying my bills for the exact same reason…

Am I a control freak?

The phrase was first used in the late 1960s — an era when great stress was laid on the principle of ‘doing one’s own thing’ and letting others do the same.

Control freaks are often perfectionists, who believe if they are not in total control, they risk  exposing their own inner vulnerabilities. When a control freak’s pattern is broken, “the Controller is left with a terrible feeling of powerlessness … But feeling their pain and fear brings them back to themselves”.(Patricia Evans, Controlling People (Avon 2002) p. 129 and p. 274)

I know that I NEED to control my own environment (and I’m very lucky as I live alone and can do so) because I feel powerless against my Fibromyalgia. I take all the appropriate medication; I pace myself as applicable; I supplement my diet with numerous vitamins and minerals; I have embraced a multi-modal treatment plan; and I have all the tools in my toolbox to help control my pain YET, if my body decides it wants to FLARE, there is nothing I can do about the pain and fatigue, except to give in to it. So, of course, I feel powerless – don’t you?

Many control freaks (now using the term without any derogatory meanings) are Type A personalities. Hmm…many sufferers of FM are Type A personalities.

Coincidence?  Could FM be your body’s alert system to take it easy, to stop and smell the roses, to let the universe handle the world around you?

Are you a control freak?

Related articles

• Resist the Temptation to be a Control Freak (conversationagent.com)
• How To Tame Your Inner Control Freak (forbes.com)
• Control freak! (lilyroseyolyz.wordpress.com)
• Controlling Control (venturegal.com)

Seven Strategies for Reducing Guilt

By Bruce Campbell

Guilt is a common reaction to CFS and FM. Some people blame themselves for getting CFS or FM, thinking they might have avoided becoming ill if they had lived differently. Other people feel guilty about no longer contributing as they used to, while others lament that they aren’t the spouse or parent they wanted to be.

If you experience guilt associated with CFS or FM, what can you do to ease the burden it imposes? Here are seven strategies used by people in our program.

Adjust Your Expectations

Guilt is often triggered by perfectionism, holding ourselves to standards that don’t fit our new capabilities. Rather than adjusting our standards to meet our new limits, we may measure our performance against either the person we used to be or the person we had hoped to be. We may say things like “I have to do things perfectly” or “I have to be the best at everything” or “My kids deserve everything from me that other children get.”

You can reduce guilt by adjusting your expectations so that they match your new level of functioning. How do you do that? One place to start is by doing a reality check on your expectations. On the left side of a piece of paper, list all those things you no longer do but think you should do, for example, fix elaborate meals, drive kids to their activities or earn a living. On the right side, write your judgment of whether the expectation is realistic.

 Reframe (Change Self-Talk)

Part of the process of adjustment is changing our internal dialogue or self-talk, so that it supports our efforts to live well with illness rather than generating guilt. One person in our program says that she used to chastise herself for taking a nap. Her self talk was “you are weak and lazy for having to rest.” Now, when she goes to take a nap she tells herself, “I am helping myself to be healthy. I am saving energy to spend time with my husband or to baby sit my grandchildren.”

Similarly, when feeling tired, you can say “This fatigue is not my fault; it came with CFS. So I don’t need to feel guilty about not being able to do everything I used to.” Or: “I didn’t ask for FM, so why should I feel shame when it prevents me from doing things.”

You can change your habitual ways of thinking about yourself to make them more accurate and more friendly. For step-by-step directions, see the article Taming Stressful Thoughts.

When Feeling Guilty, Shift Your Attention

Even if feeling guilty is inevitable, we can control how we respond when feelings of guilt arise. One person in our program said that when she feels guilty, she asks herself, “Is this feeling productive?” In some cases, the answer will be “Yes.” Guilt can draw our attention to ways in which we have failed to live up to our standards and can motivate us to act differently. (See next strategy.)

If the feeling is not productive, however, it may be better to respond to guilt by turning our attention elsewhere. As another person wrote, “It’s better not to go some places in your head, so I’ve learned how to control my own thoughts.” Another said that when she is caught up in feelings of guilt, she tells herself things like ‘this isn’t my fault’ or ‘these feelings will pass as long as I don’t allow myself to act on them’.”

If You’re Wrong, Apologize and Make Amends

Guilt can be helpful if it motivates you to take better care of yourself in the future and to treat those around you with more care. One person said that if she does something to hurt her husband or her children, like lashing out at them verbally, she apologizes.

If being undependable bothers you, you can use guilt over canceling out on commitments as an impetus to be more consistent in pacing. Another person said, “I was so embarrassed by canceling out on people that I promised myself I would do better. That commitment motivated me to be more consistent in pacing and to become a more dependable person.”

Educate Others (Within Limits)

In addition to adjusting your expectations for yourself, others expectations of you will have to change as well. People in our groups have suggested several strategies for doing this. One is to educate people about CFS and FM, emphasizing that they are long-term conditions that impose significant limits and require adjustments of the person who is ill and those around her. One person in our program gave each member of her family a booklet on CFS from the CFIDS Association and asked them to read it as their birthday present to her one year. The process of educating family and friends is usually a gradual one, often taking several years.

Learn Assertiveness

Another strategy for reducing guilt is to be assertive, standing up for yourself by stating what you will and won’t do. A person in our program says that her family now accepts it when she says “I am sorry I can’t do that.” She tells about a family outing she and her husband went on with their adult children. At the end, her husband invited the children over to their house. “In the past,” the woman says, “I would have gone along with it, seething inside at myself for not saying anything and at them for not knowing I couldn’t do it.”

Instead, she told everyone that she needed to rest and she suggested that her husband spend the evening at one of the children’s homes. So that’s what the family did. The woman took a nap at home while the rest of the family went to a daughter’s house to watch a movie.

Practice Relationship Triage

A final strategy is to reevaluate your relationships, practicing what we call relationship triage: making explicit decisions about whom to include in your life, concentrating on the more valuable or necessary relationships and letting others go. You may decide that some people will never understand your condition or accept that you are ill. In some cases, you might choose to end a relationship. For relationships you decide are necessary, you might limit the frequency of contact.

So, it’s finally hit me…I’m home from Bali. Duh! you say, but I was able to stay in my little fantasy land for a whole week.

Despite coming home to: two telephone bills (home and mobile), a car registration notice, an invoice for three quarters of body corporate fees, an impending hospitalisation to withdraw from codeine, the spectre of a gallbladder operation (then disappearance of aforementioned operation), the new threat of a lesion on my liver, and an unexpectedly high bill from my handy-man; I was somehow able to hold onto my dream of returning to Bali for a year. Forget Eat, Pray, Love – it was just going to be Love, Love, Love!

WHO AM I KIDDING? For some unknown reason, today it hit me full force that I’m home and, most probably, staying here. I don’t know why it was today – nothing huge happened; but it slammed into me (kind of like those trucks that hit us during the night so we wake up in so much pain) – I’m on a disability pension. Yes, it is cheaper to live in Bali. Yes, I could rent out my unit. But I would still need to return every 3 months to continue receiving my pension, and airfares are not cheap.

This ‘little’ dose of reality brought back all the other stuff (above) that comes with being at home and, all of a sudden, I am overwhelmed. Too much, too quickly!

My reaction is a quick visit to the darkness of depression…

STOP! Wipe those idiot tears. You need some control!

I can’t control any of the bills or medical hassles so my antidote is to get some control over my surroundings – 8 shelves of books going to friends or the Op shop, 2 suitcases of clothes I don’t wear (but I might one day) going to be stored in Mommy’s garage and 4 bags of trash. There is stuff everywhere (I can’t do it all in one hit – I have Fibro, remember?) and I’m unhappy about going to bed, knowing that all this stuff will be waiting for me in the morning; but my exhaustion (and gravity) is dragging me down. So, now, not only is my head a mess but, so is the house (more so than before!)

But, as Scarlett said: I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow.

P.S. The clean basket of laundry is still sitting on the floor of my bedroom.

P.P.S. And, maybe, I can still work out a way to Bali…

So, when you read about me getting botox in Bali, was your first thought ‘how self-involved?’ Guess again, people…

Most common locations of trigger points in migraine sufferers.

Scientists at the University of Granada have confirmed that injecting botulinum toxin (botox) into certain points named “trigger points” of the pericraneal and neck muscles reduce migraine frequency among migraine sufferers. University of Granada researchers have identified the location of these trigger points – which activation results in migraine – and their relationship with the duration and severity of this condition.

Headache is a universal experience. At present, there are more than 100 different types of headache and one of the most recurring ones is migraine, which affects approximately 10-12% of the population. And once again, women suffer more than men (being three times more common in women than in men). When migraine becomes chronic (occurring more than 15 days a month), it can disrupt patients’ daily life in a great degree.

This research study is one of the three studies that have been conducted by Juan Miguel García Leiva -a researcher at the University of Granada Institute for Neuroscience “Federico Oloriz” — and coordinated by professor Elena Pita Calandre.

Trigger Points in Migraine Sufferers

In the first study, researchers examined a sample of healthy subjects and patients with a diagnosis of migraine (any frequency), and analysed the presence of trigger points and their location, many of the explorations resulting in a migraine crisis. The most interesting findings of this study were: 95% of migraine sufferers have trigger points, while only 25% of healthy subjects have them. The most common locations of trigger points are the anterior temporal and the suboccipital region, both bilateral, of the head. Furthermore, researchers found a positive correlation among the number of trigger points in a patient, the number of monthly crises and the duration in years of the condition.

Subsequently, researchers conducted another study with 52 migraine sufferers. Over three months, patients received a weekly subcutaneous injection of 1mL of a local anesthetic into their trigger points.

After the injection of the anesthetic, 18% of patients experienced a 50% or higher reduction in the frequency of migraine crises, as compared with the basal period. Additionally, an 11-49% reduction of frequency was observed in 38% of patients. Two thirds of the patients treated reported to feel “better or much better.”

Few Side Effects

In the third study, 25 patients with chronic migraine were injected with 12.5 doses of botox into each trigger point twice, during a period of 3 months. Frequency (main variable), intensity and scales of migraine crises were recorded one month before and one month after the treatment to compare the changes experienced. In addition, side effects were also recorded during the experiment, and they were found to be mild and temporary.

After the injections, the most significant decrease in crisis frequency was observed at week 20. Similar results were obtained in those crises labelled as “moderate” and in the frequency of analgesic use by patients.

García Leiva specified that this treatment “is not a first-choice treatment for migraine sufferers,” but it can only be applied in patients with chronic migraine who have tried several treatments with poor results, and who show peripheral sensitization of muscles. Recently, the Foods and Drugs Administration (USA) has approved botulinum toxin as a therapeutical drug for the treatment of chronic migraine.

So when I have established my Bali Fibro Haven Retreat, I’ll be organising trips to my now favourite doctor for all my guests, as well as yoga and meditation sessions. I’m willing to embrace all treatments that may help us.

Source

The above story is reprinted from materials provided byUniversity of Granada, via AlphaGalileo.

Note: Materials may be edited for content and length. For further information, please contact the source cited above.

Related articles

• A pensioner has used botox to end her migraine nightmare. (mya.co.uk)
• Plastic surgery helps my headaches, says patient (mya.co.uk)
• 3 Things You Didn’t Know About Botox (aboutplasticsurgery.com)
• Botox to be used to treat migraines? (mya.co.uk)

Statistics show that about 76% of FM patients who sought treatment reported that they suffered from chronic headaches. Of these, 84% reported severe or significant impact caused by their headaches.

There are three different types of general headaches that are linked to FM: Tension Headaches, Migraines and Combination headaches.

FM tension headaches are the most common. They are caused by muscle spasms or contraction in the head, neck, jaw, shoulders and upper back. The muscle spasm typically originates at the base of the neck and works its way upwards all the way to the temples. FM patients describe these headaches as an extreme tightness encompassing the head that can cause pain upon movement or restrict head movement. These headaches typically last a couple of hours and can range from moderate to severe.

FM Migraine Headaches, also known as vascular headaches, are caused by constrictions of the blood vessels. Fatigue, stress and illness can all cause the blood vessels in the head and neck to dilate and constrict, causing severe pain, dizziness, eye pain and nausea. Migraine headaches also can move around your head at times. They can feel like incredibly painful pressure is building inside the skull in specific location points for no apparent reason.

Combination Headaches, which are a combination of tension headaches and migraine headaches, are also commonly seen in FM sufferers.

Fibromyalgia headaches are caused by several different factors:

• Sleep Disorders: People who suffer from migraines often show significantly disturbed sleep patterns. FM also often causes sleep related disorders including sleep apnea. This could be one of the reasons who so many FM patients suffer from morning headaches. Moreover, sleep disorders also tend to increase the frequency and the severity of headaches.
• Low Serotonin Levels: Recent studies that have been done show that migraine headaches and FM may be caused by the same factors. This implies that migraines and FM are in fact concurrent illnesses and it contradicts the previously held theory that migraines are actually one of the symptoms of the syndrome. People who suffer from migraine headaches have reduced levels of serotonin in the brain. This low-level of serotonin impedes the ability to communicate pain signals effectively, resulting in increased and even severe pain.
• TMJ or Temporomandibular Joint Disorder: A large number of people with FM also suffer from Temporomandibular Joint Disorder or TMJ. This is a disorder that causes bruxism or grinding of the teeth as well as joint and muscle pain in the face, neck and jaw, all of which can also contribute to headaches.
• Low Magnesium Levels: People who suffer from migraines showed low levels of magnesium.
• Stress:  Stress is considered to be a primary causal factor in FM and a key component to what causes headaches. Stress can lead to vascular contraction and muscle tightness contributing to both Migraine and Tension headaches.

While there is no conclusive proof regarding FM specific aggravating factors, there are several potential causal relationships. Fatigue, stress, anxiety and sleeping problems are thought to increase the frequency and severity of headaches.  Muscle spasms, myofascial pain and tender points in the neck, which are common symptoms of FM, are also thought to trigger severe headaches.

So, in addition to all over muscle and body aches, it appears that most of us are lucky(?) enough to experience headaches or migraines more often than before the onset of FM.  As many of us know, adding headaches to the already complex dynamics of FM make it even more difficult to deal with. FM headaches exacerbate the existing pain, fatigue and mental distress that characterize the condition.

 Related articles

• Headaches upon waking are ‘sign of serious sleep disorder’ (time4sleep.co.uk)

Yesterday, after reading some posts on other Facebook sites, I thought about how positive we all have to be – ALL of the time! But, sometimes we need to let it all out, right?

So, instead of all the ‘I’m grateful for…’ or ‘I’m looking forward to…’ type discussions, I decided to encourage a GRIPE SESSION about Fibro! And WOW! What a response – it appears that we (as a group) really NEED to vent every now and then…and there is nowhere to do it.

Each post was to begin with ‘I hate’. The first one is mine. The remainder are the unedited comments from the post. Feel free to add yours in the comments area.

I HATE that I had to phone my Mommy at 10pm last night, for help, because I was in so much pain that I couldn’t lift my head, let alone get myself into bed! I HATE that I have a giant pile of clean laundry sitting in my bedroom that I haven’t got the energy to put away properly! I HATE that there is stuff all over my house because I need to say that I’ll put it away later! I HATE that I was unable to go more than 2 days without codeine!

I totally hate that I get about a chore and a half done and I feel like I could sleep for a week. I hate that I have to take naps throughout the day. I hate the my guy doesn’t understand what I go through and looks at me as lazy. I hate that I don’t have the ambition I used to and that the depression makes me wonder why I even try to fight each day. I hate that almost nobody I know understands my medical issues and looks at me like I’m worthless and less of a person.

I hate that I can’t play the sports that I used to love playing!

i hate that everyone thinks they “know” how i feel! really, you dont! i hate that im constantly ruining plans with my kids and friends. and lastly i hate how im not the person i want to be or used to be

I HATE always having to say I hurt and having people look at me like I grew 2 extra heads. I HATE not being able to go hiking, bike rides, a walk on the beach or even cleaning my house like I used to!

I HATE that I have to LIVE taking a handful of pills to feel somewhat normal! I HATE that I can’t just get up & enjoy the day, playing, going out around town with my kids! I HATE not being able to do any physical exercises to help strengthen me! I HATE not being able to clean my house daily, fold & put away clothes!! I HATE that I can never sleep without taking tranquilizers!!! I HATE FIBRO!!!!!

I hate that people think I’m fat and lazy. I hate that others just look at me and automatically assume i can do anything they ask me to do and if i have to say no, they get upset. I hate that i feel i sleep most of my life away. I hate that i can’t clean my house by myself. Ugh!

I HATE FIBROMYALGIA AND ALL IT HAS CHANGED ABOUT ME! PERIOD…

I hate that some people think I’m stupid because the fibro fog makes me stumble over my words. (I’m not stupid…I’m a PhD student!) I also hate that I can’t enjoy day-long activities that involve plenty of walking (like going to a Renaissance fair or state fair) without getting completely exhausted. And I hate having allodynia, especially when my husband is trying to be affectionate.

I hate that my muscles have been in spasm since Tuesday. I hate that I had to take Roxicet and a muscle relaxer, which made me sleep instead of live. I hate that I have a bunch of clean laundry that I can’t even fold, much less put away. I hate when I’m so tired I just want to sleep for a week. I hate that, although I’m excited about my upcoming vacation, I’m scared that I will be too sick to enjoy it or do the things we have planned and paid for. I hate that I have this stupid fucking disease!

Theres a List, but I cant say………… what I really want to!

I hate’ that I have to take breaks everytime I do things!!!. My energy is never high!!. Thanks Fibro

I HATE THAT I HAVE NOT BEEN ABLE IN 10 YRS DO CLEAN MY HOME OR WLAK MY DOG OR WALK FOR ME!!!!!

It is a new day everyday . The sin gets worse with age!

I HATE Being in pain and crying myself to sleep. I HATE that my ankles swell up so bad. I HATE the days that my feet hurt to touch the ground and my hands hurt to hold my phone and it hurts to talk. I HATE that I don’t want to go out anymore because once the pain hits I just want to go home. I HATE that no matter how many hours of sleep I get I am still tired. I HATE that people don’t understand what I go thru. I HATE that My meds don’t help me. I HATE that I always sound like I am complaining when I say I am in pain.

I hate that I had to have a neighbor come over today and clean my house so that the chimney and furnace guys could get to what they need to get to tomorrow. I hate feeling useless. I hate the fact that even with all the pills I take I still don’t feel able to do the things I need and want to do.

I think I just agree w all of the above I HATE this illness!!!

Agree!

I hate that I can’t work anymore! I hate the way people look at me thinking I’m overweight and lazy! I hate that I can’t go out with friends! I hate that my memory keeps going! I hate I can’t remember what else I hate!

I hate that I can’t work. I hate being broke. And broken. I hate not being able to be active with my daughter. I hate that I lost everything from getting sick. I hate that people don’t understand! I hate being seen as lazy! I hate being forced onto state insurance, being seen as welfare. I hate having lost interest in fun activities (too physically demanding), I hate having my dreams and desires on hold, I hate doubting they’ll ever come true now! I hate that fibro ruined my relationship with my boyfriend. I hate hurting, everyday, all day long. I hate battling with disability companies. I hate hate hate being fluorescent light intolerant!!!!!

I hate that I cant play in the park with my kids for than a min before i need a break I hate not enjoying rain I hate being so tired I dont even get dressed n stay in bed!!!!!!! FU FYBRO!!!!!

I hate that I have to agree with each and everyone hates! I hate crying myself to sleep, I hate taking all the meds, I hate that everyone thinks they know how I feel.

i hate that i go to bed hurting and then wake up hurting, i hate that i have to take narcotics every day to get such a little bit of relief, i hate that i don’t ever feel like doing anything, i have that i always feel so bad that i don’t get to go to any of the activity’s my daughter does i hate that when i do get up and go to the grocery store that by the time i am half way thru the store i hurt so bad i can hardly walk and i could go on and on and on

I feel the VERY SAME WAY on a daily basis!

I hate it all! I hate I have to keep a bag of meds beside me all the time everywhere I go, I hate that I get tired and have to stop less than half the way through a chore I need to do for the house. I hate that my child always feels the need to ask how I’m feeling everyday and how I have to ruin some plans if its a really bad day. I hate I am no longer a “productive” person and I am not able to do the jobs that I have the education and certification to do. I hate never having any energy. I hate that the couch is more comfortable than the bed for me and don’t get to sleep beside my husband for more than a few hours cause my hips and back hurt so bad. I hate the judgement from others at the amount and type medicine I have to take everyday. I hate when people say they have the same condition as I do and pop 2 advils or tylenol and it makes them better–they don’t hurt like I do.

I hate that I am not working, I hate that I can’t clean my home the way I want to I hate that I hurt I hate that everyday can’t be a good day. Thank you

I hate hurting everyday, I hate that I don’t feel like going to see my family more, I hate that I can not do the things I want to because of the pain.

I agree and also hate everything mentioned above. I hate that I also passed this to my oldest daughter, and she has it worse than me. I hate that my house is always a pig sty. I hate that I fight with my youngest daughter every time she wants to go shopping because I don’t have the energy to even think about walking around a store. I hate that she thinks I don’t love her because of this. I hate, hate, hate FIBROMYALGIA!

I hate that when I get out of bed in the morning every morning.I feel about 95 not 33 and my body hurts like i’ve got the flu everyday…No one understands!!!!!! That I still have to try and live a normal adult life,work,clean the house and take care of my children as if i’m not suffering ever moment….I’m an aide which I love but I want to be the person in that hospital bed most of the time>>>LOL…Besides all thatLife is wonderful!!!!! Bless everyone who has to deal with some sort of chronic pain.

I hate the fact I am always in pain and I feel like I am worthless because I have a chronic illness

This is great to hear all of this from others to know that I am not alone in my tears and frustrations. I am irritated the most by people who really never comprehend what I go through daily. I also cannot stand when that look of confusion or pity comes over their faces. I was such an active person and while I keep fighting, I feel like I am losing the battle. I cannot give up because I refuse to let this take everything from me. So I struggle through the pain and fatigue, praying for a break, in what seems to be a neverending flare! I long to be the physically and mentally strong person I used to be. Why can’t these damn docs come up with a better plan knowing how many people are pained by this? Why are we seen as jokes when we file for disability? I worry about my future…

I despise that there are so many millions of people that suffer from chronic pain, lack of sleep and not having a great support system within their own environment. After reading all these comments, I am sadden that soooo many struggle, yet I am delighted to know I am not alone!!!!

I just miss sleep. Real, deep, restful sleep!

Omg, I need to add one to my list. I HATE that my boyfriend down plays my illness and multitude of dibilitating symptoms, he gives me absolutely no empathy, sympathy, understanding, etc., he has called me worthless, he doesn’t even try to understand….. But…. When HE hurts, or is sick, or has a headache… He whines to me about me! And wants my sympathy!!! Really???? I HATE THAT!!!!

i hate that the pain never stops, hate that i can’t clean my house the way i used to, hate that i can’t go shopping without being wiped out ad hurting for days, hate that i don’t have the eergy t spend time with my kids, hate that this has robbed me from having a normal relationship with my husband, hate that fibro has destroyed my life!

I hate that I can relate to every hate above. I hate that I am a shut-in. I hate that I was awoken at 5:20 am on this Sunday because the pain was so…. intense. I hate that I don’t believe there will ever be a cure for this illness :/ XOxo… “God bless, prayers to all.”

I hate, HATE HATE all that fibro’s taken away from me ~ the ability to work, can’t walk for more than half a mile (the crippled foot adds to that), travel is so hard, hate that I can’t even clean my own home, hate that taking my dog to the park is so exhausting I’m laid up for two days afterwards, hate that even taking the top down on my car is too much, hate that I can’t remember so much of what’s been going on around me and in front of my very eyes, hate that the best thing I’m supposed to do is get some cardio, and I hate cardio because it just wipes me out, even when I start small and try to build on it. And I hate that very few people understand the insidiousness of this chronic pain disease shit. My husband tries to understand, but he still doesn’t really get it. But I WILL NOT LAY DOWN AND DIE, DAMMIT. I will ALWAYS get back up again.

I hate being this young and feeling so old. I hate being in tears after a day at the zoo with my boys. I hate the frustration of being unable to exercise and be in shape. So depressing. I hate taking so long to try to even get out of bed.

I hate not being able to have my old life!

I hate the fact that I am a fraction of the person I used to be. I hate the fact that I don’t want people to touch me because it hurts too much…

I rather die, that live forever kneeling…

I hate…that I could not get up to go to church! I hate that in the afternoon I went garage sale shopping (my favorite) and had to give up and go to my daughters house and lay on her couch because I was completely drained. I hate not taking any pain killers because out of my own free will decided to leave them cold turkey since last January. I will NOT go back on them. I hate the depression I have had for over 10 months, I seldom leave my house.

Even through all of this I am so thankful to God for His many blessings.

I hate that a good day is a 3 on the pain scale. I hate that everyone wants to compare my pain or muscle spasms to theirs and tell me to eat bananas! I hate that I never have enough energy to do make a shopping trip. I hate that look of disappointment on my husbands face when he asks how I feel today. I hate that no medicine helps more than it hurts. I hate that my house is dirty. I HATE FIBRO!!!

I HATE..that I am getting worse and that my brain doesnt work. I hate it when I hear people tell me to be POSITIVE as they dont know what else they can say. I HATE it when friends look at me and knowing that they are questioning my condition. I HATE it that I had to give up work..I HATE it that I cant plan anything. I HATE it that I cant go to the gym anymore and that I cant go for long walks. I HATE it when I go blank at the check out counter and feel so embarassed when I cant reply to a question…most of all I HATE not being able to jump out of bed and get dressed and enjoy the activities of the day! Saying all that…I AM GRATEFUL for the few activities I can do and also the love and understanding of my husband and girls

I hate that I can identify with what so many of you said. I hate not being able to make plans b/c I don’t know how I’ll feel from day to day. I hate going to sleep in pain, getting up throughout the night b/c of pain, and finally, waking up in pain. I hate that when I tell someone I’m not in a mood to talk, going out, etc. b/c I’ve been up all night in pain, that I’m told to “suck it up.”

I hate that my kids have turned into teenagers while I’ve sat in my recliner. I REALLY hate that. I hate that my daughter waited and waited for me to get better so I could pick her up again, and then suddenly she’s the same height as me and 13 years old. I hate that I can’t take her shopping. I hate that I can’t be there for my boys. I hate that my husband has to work his ass off all day, leave work early to pick up the kids from school (I can’t drive), comes home, cooks dinner, takes care of me, then finishes the remaining two to three hours of work that he has left. Every.Damn.Day. I hate that I can’t be intimate with him because EVERYTHING hurts. I hate that so bad. I hate the weight I’ve gained. I hate that I’m tethered to my meds. I hate that I cannot think, cannot speak, everything is either a “what’s it called” or a “thingy”. I used to be a smart person. I hate that I sleep until noon every day of my life. I slept until 2pm today even. I hate the cold sweats I get from the meds. I hate the aches, God knows I HATE THE ACHES. I hate that people think they know how I feel. I hate forgetting what I’m saying in the middle of my sentence on a regular basis. And wow, I apparently reallllly needed to vent! I do thank God every day for the blessings I do have though. Sigh.

I hate that I don’t sleep at night cause I wake up in constant pain, tired all day, and iritable from lack of sleep. I hate that the only time I feel good is when it’s a constant 100 degrees or above, we need the rain so bad. Which in turn makes me hurt like crazy. I hate not having a clean house, and constanly having to have my 16yr old son help me out cleaning and doing dishes. I hate that all the activitties I want to do I can no longer do. Like hiking, going for a just a walk in the neighborhood, and walk the dogs. I hate the pity, or the what’s that? With the look in return that I’m full of crap. I hate that I’ve gained so much weight and really have no energy to try to work it off. I hate when we actually go to do something I have to say I can’t stay out cause I hurt so bad I just want to go to bed.

(takes a deep breath- ouch) well thats the first hate, i HATE it when it hurts to breathe, i hate it that i can feel my blood pump through my body and my heart beat .i hate that each pump and beat is painful. i hate my feet being so sore it feels like i’m walking on hot glass shards.i hate the pain that moves all around my body. i hate the fact i have pulled muscles and trapped nerves 5 times in 3 weeks in my neck, back and ribs just from wiping my arse.i hate that my hands are too cramped and painful to type properly, to brush my hair, hold a phone or pen, hold a book up to read,i hate that it hurts to drive my car and that i have to take my kids shopping with me so that i dont have to push a trolley.i hate being hungry all the time but unable to eat cos my body says no. i hate it when i DO eat that i may as well chuck it straight down the loo as i cant keep it in.i hate it that i cant eat foods i used to ( like cereal/milk.cheese.bread ) i hate the way my eyes feel like they burning cold and my skin is sore to the touch yet sorta numb too .i hate feeling like a human scrunchie.i hate needing to pee 20 times an hour.i hate the migraines which last for days and seem to come in clusters.i hate the numbness, facial neuralgia,muscle/nerve twitches and poor balance.i hate the fibro fog and the way it affects my speach,i hate being fatigued but unable to sleep or rest, then falling asleep at the drop of a hat when i dont want to and having no energy.i HATE that i am having to go to a benefits tribunal because someone doesnt see that i am in pain and assumes because i struggle to do something and am not howling in pain, that it isnt painful. SORRY i have learnt that howling in pain doesnt make it better so (waste more energy doing that?)i hate the “officials” who assume we’re all fakers and that we can work/carry on and ignore the pain or be ” normal” because we’re on pain medication..i hate that i feel so issolated and alone and sad.i hate that i’ve lost people to suicide and always said i couldnt understand why they did it.. and although i wouldnt do it myself… i HATE the way i can now understand their desperation.. and finally i HATE the way i need to write this.sorry it was a long one.

I HATE that I can’t run like I could. I hate that a 2 mile run makes me feel exhausted like a 10-miler used to. I HATE the side effects of my celexa.

I hate everything about it. I lost my old life. I have no energy to do anything. Sleep doesn’t even help anymore! I just HATE it!!!

i hate that I am so tired, and lately so depressed. I hate the fact that I start something and have to stop because I hurt so much. I hate that just because I try to keep positive, people think there’s nothing wrong. I hate that people don’t realize how badly I feel sometimes. I hate that I forget what I am about to say at mid-sentence. I hate that I can’t lay still for more than a few seconds so I’ve taken to sleeping by myself, and not with my husband I hate that my skin feels like it’s on fire. I hate that I feel as if I am losing my mind. I hate that I am sick.

I hate that I missed my 30 year class reunion. Tiredness, achy joints n muscles wouldn’t let me leave the house. I hate I’m always drained, n when I do feel like doing something, it’s what I want to do and I don’t have the energy for others, n they think I’m being selfish. I hate that feelin, when my daughter calls n says let go out of town n I’m too tired/fatigued.

No, sleep is not refreshing…. Always tired.

I hate more than anything that the other day my 12yr old asked “mom, can I get Fibro” God I hope not.. and the days I have to say, not right now, I need to rest and dnt feel like it. I hate that I love my kids and husband so much but they feel like I never have time and energy for them…mom needs a nap is said way to much in our house… I hate that I’m so SAD…

I HATE when all of a sudden you can’t move your neck and it freezes up into the back of your head ! It’s very aggravating!!!

I HATE not having energy to do anything! i hate that my feet hurt and feel as if i have cinder blocks hanging from my abkles! i hate that people dont understand my pain! i

All I can say is you took the words right out of my mouth! I hate it, hate my body. Try to remember that God does not letting anything happen without a reason, and that Glory to Him will be given and that maybe I can help someone else. Or, at the least, understand. We are starting a support group on Thurs…

I hate hurting all the time to I hate not having any energy to.

The comment about not being able to eat caught my attenction. Have you tried gluten free? It has helped me. As a matter of fact, I went rebel and ate anything and everything I wanted last week, it sent me into an awful flare, worst than a long time. A few days of not eating it, and I am feeling a little better. I threw up everyday before stopping eating it

I hate that all but three of my friends have disappeared, even some that I thought would support me. I hate when people ask “how are you feeling today?” and I can’t think of anything to say that’s hones, because they want to hear “I’m OK”. As if I’m suddenly going to wake up and be cured… I hate that I got nothing done all weekend due to a pain flare, but I needed to do so much. I hate that I’m single and have no choice but to continue working, even with intense pain every day. I hate that my employer has threatened to fire me for being a few minutes late, when most days it’s all I can do to even get our of be. I hate sleeping with a CPAP, choking in my sleep and waking up feeling even worse.

I HATE that I don’t feel like “me” any more. Instead, I feel like a person that is 30 years older than “me” and those 30 years have not been good to “me”. I feel old and broken. I HATE that I can’t think like “me”, I can’t talk like “me”, and I can’t move like “me”. I HATE that I may never be “me” again. I REALLY HATE that I understand exactly how all of you feel! . . . And lastly, I HATE that we all have to put our thoughts into facebook because we are all the only ones that really understand each other. (((Gentle Hugs to All)))

I hate that I can not do things normal 32 year old people can! I hate have no energy to clean, exercise, play with my son, enjoy alone time with my sig other! That I had to call in this weekend because I was in pain, or at work that I can be out run by elderly people in wheel chairs! I hate that I am in constant pain, depressed and take more meds then anyone my age should! I hate that I have to spend a lot of $ on meds and doc appointments! I hate that I have to give up things I enjoy gardening, having an occasional drink, etc!! I hate it when you have to explain yourself over and over about why you never feel good or can’t do things you use to or why you move so slow! I hate that my son does not have a healthy MOM!! I hate when I can’t sleep or when you do sleep the pain wakes you up! I hate feeling isolated and alone! I hate that this disease controls every aspect of MY LIFE! I hate that people have to worry about me or constantly pick up my slack! I hate when people ask how you are?! I hate that sometimes doing the normal everyday things make me tired like taking a shower or walking up steps! I HATE THAT THERE IS NO CURE OR HOPE FOR A CURE FOR ALL OF US!!!!!

I hate that this disease has changed me as a person and stole my youth!

I hate that I can’t function like I used to be able to. I feel like something just took over my body and I cant’ do anything about it and I hate that. I hate that people do not understand my pain, my extreme fatique. I hate that after two months of working full time, I begin to get sick all the time, I fall asleep at the wheel and I start performing poorly when I actually think I am doing a great job. I hate that I can’t find a complete fix and I hate that I can’t enjoy eating what others can enjoy.

I also hate that all my “friends” are no longer around and never even call or invite me or include me in any event or outings they may be getting together. I hate the feeling of isolation, loneliness, depression and uselessness that I feel. I hate that I feel like I don’t have a purpose anymore.

I also hate that my son has to see his mom crying and is to young to understand why his mom is sad so much!

I hate all of the above constantly every single day!

I hate that I took my last Percocet today! I hate being too nauseated to eat! I hate letting myself down on my therapy goals because I’m so tired! I hate being looked at and spoken to like I’m a fraud when I need to use my disabled tag! I hate that there are days I’m too exhausted to take my medications! I hate that my insurance company feels it has the right to take me off of a medication that has helped at least some and force me to try an outdated antidepressant! And most of all, I hate that this post ever had to exist, for any of us!

i hate not being able to recall the last time i experienced a day without pain and fatigue

I hate that I have lost who is was. I hate I can’t do the things I could do before. I hate that my kids have to see me suffer. I hate I can’t do things with my kids when I want. I hate that my fiancé has to see me breaking down. I hate I can’t be the mom or fiancé I want to be. I hate that I hate so many things because I always taught my kids not to hate. I hate trying to act like I am not angry and hating all the time. I hate having to ACT happy or ACT like I am not in pain because people think you are weak. I hate that people think we are lazy! Thank you group. Hugs.

I hate that what I used to accomplish in a day or two now takes me a week or more. I hate how it has aged me. I hate how everything has to be planned in advance and even then I may not feel well enough to go. This was vocalized when my youngest was in grade school and he said “Mom spoils everything.” I hate that I will never fall in love again because who would want to be with someone who always feels like crap? I hate how it contributed to the ending of my 30yr marriage. I hate how my kids don’t care

I hate not being able to take my 2yr old to the park on my own…i hate not being able to have long days out with my children…i hate not being the way I used to be…i hate the fact even cleaning the house makes me ache so much I can hardly move…i hate the days where I cnt even get up my stairs…i hate wen im having a bad day and dnt have the energy to move so I lie on the settee and think that people think im lazy…i hate not being able to walk far…i hate not remembering wot it feels like to be pain free…i hate the fact I was a fit healthy person until my ex threw a bottle at my head…i hate that I worry how this is gonna affect me wen im a lot older…i hate healthy people who abuse there bodies and dnt know how lucky they are…i hate that some days im in to much pain for you to cuddle to…i hate that I could write loads more things about wot I hate, wen all i wanna write is how much i love waking up fresh and healthy…and most of all, i hate fibromyalgia exists and their is nothing to really help us x

I hate everything about fibromyalgia, the pain, the extreme fatique , the list can go on & on & on. I wish that I could wake up for once and feel refrehed and energenic.I wish my depression would go away. I wish that people would stop saying, well you look fine, why can’t you work. Fibro really really sucks bigtime…

I can relate to each and every one of you… I Hate not being able to sleep through the night without getting up and taking pain meds, I Hate that I can not sleep, I go to bed tired & hurting and wake up just as exhausted or more so, I Hate that I can no longer work, I Hate not being able to make plans and stick to them, I Hate not being able to spend time with my grandbabies like I want to… I Hate the feeling of fatique & not having the energy I used to, some days simple tasks seems like climbing a mountain, I hate the feelings of disappointment, worthlessness, depression, etc…. I HATE FIBRO!!!!!!!!!!!

I hate that I am in so much agony that I couldn’t enjoy my visit with my grandkids this weekend. I hate that I too have piles of clean laundry that needs attention and there are so many unfinished chores in my house because I am in so much pain or too fatigued. I hate that I need to give up today and take the demerol. I won’t say “good night” because my body apparently has other plans.

I hate fibro and all it does to a once healthy active body

I hate fibro, because I am no longer the person I was. Hugs for all of you who are suffering to.

I hate what fibro does to my partner, after her first collapse in November I felt like somebody robbed me of her like just one day I woke up and there was a stranger in my bed, after a break and a lot of hard work I am slowly getting to know the woman I love again. I hate that at 5 years old our son has to get his head around a complex medical condition and worries about Mum all the time when he should be thinking about playing and the park and just being 5… But mostly… I hate that I can’t do anything about it I hate how useless I feel every day and I hate that sometimes she looks at me and I know that she thinks I don’t understand when I’m trying my hardest too.

I hate tha I have to agree with 99% of the above, and that doctors and others just say it’s only in your head. nothing wrong with you. just get up and get going.

I hate that I have no life anymore. I hate that most of the time that I don’t see my kids. I hate that my gorgeous eldest daughter has to run my house and look after my children because I can’t. It does help that she still lives at home with me though. I hate that I’ve lost every body cos they don’t understand what I’m going through I do in a way understand how boring and depressing it must of been for them though. I hate that most days I can’t even dry and straighten my unruly hair. I hate that I spend days not being able to sleep then days when I can’t stay awake. I hate having to take pills every day just to get through to the next. I hate feeling so down and depressed. I actually hate being alive and I hate that I still can’t come to terms with the fact I don’t have a life anymore

I hate that I just at a breakdown and my husband feels helpless…I hate that my hands dont work and I cant even prepare a simple meal! I hate that every part of me hurts and all I want is for the burning feeling to stop. I hate having to vent on facebook and that how only fellow sufferers know what its like to have your independence slowly crumbling away :’(

I hate that I can’t walk, and have to use a wheelchair, and most places are wheelchair inaccessible – even if they claim they are.

i hate every symptom of fibromyalgia but what i hate worse is the medical industry that exploits it….under- mediating or over-medicating as how it suits their profit!

I hate waking up still with the pain I went to bed with, I hate not being the person I was, I just hate not being able to do anything in this Fibro state. Love and hugs to all x

I hate when people say “you’re too young to know what it’s like to have your joints ache”, etc. No one understands! I want my life back! I’ve had this since my late 20′s and it’s not fair but I have to deal with it. I hate not knowing how I’m going to feel day to day. I hate when someone accidentally pushes on one of my pressure points and I want to scream because it hurts soooo much! I hate going to bed early just so I don’t have to feel the pain in my sleep.

I hate that my house is the messiest of everyone I know! I hate that my teenage girl will never have a “partner” to help her train for athletics! I hate that loving my family through hugs actually hurts me physically!! I hate that nobody ever understands. And MOST OF ALL, I hate when people say that “they hurt too”, it’s just a sign of the times with aging and “I’m lucky I don’t have…….Whatever!!!! Whew! I feel better! Thanks!

I HATE that my loving daughter has this FIBRO…

I HATE that I am crying so much that I can’t finish reading (and ‘liking’ – want to support you all) all the comments. I HATE that I understand so well what you are all saying – except for the parenting bits (and that is another HATE – I was not able to be a mum because of Fibro). I HATE that I can’t do everything that I want to do in life, that I can’t plan ahead properly, that I often need to cancel/change plans (I was meant to go to a family party this weekend, but could not cope with the 6 hour drive each way), that I rarely get a good night’s sleep, that I mostly rely on painkillers to get through the day, that I cannot join in with my friends on their long horse rides, that I had to give up running (except for an occasional short jog), that I get confused and forget stuff all the time (I used to be a Director’s PA and super-organised), that I always get travel sick now, that it affects my wonderful hubby and so much more. Gentle hugs to everyone. Ali x

I have just been to opticians who told me the issues I am having with my sight is due to my muscle spasms and that it takes me time to focus and not my actual sight. Another bloody thing to add to the list.

Also missed out on going to London yesterday with my daughter and a friend as knew it would be too much and would end up spending rest of week in bed. They ended up seeing stars from jls, diversity and pussy cat dols as well as chance of being on tv. All cause of stupid condition. Have missed out on so many things this year including my nephews 21st birthday party. I never know til last minute whether I am gonna be well enough to go anywhere.

I hate that it took my life away from me! I hate crying so much from the pain. I hate having to rely on medication. I hate EVERYTHING that has come with this demon living inside my body. I LOVE getting it out to vent. This was a great idea! Thank you!!

I hate when people think I am lazy because I always hurt and my energy drain, I hate the ideas of living of Fibromyalgia and make me wish I never wake up and go through another day of suffering, I hate when I am sad or need nap a lot. I hate when they judge me without understanding what kind of day I going through. I hate when there is no cure for Fibromyalgia. I hate when people think they can tell me how to eat or do to cure the pain when it is not working as all, I hate when all I thinking of just ending my life because I can’t deal another day of endure pain. I hate when people think I am faking it when it so real. I hate when I cried all the time knowing I break my promising when I can’t get up and do it. I hate to feel the burn and aches. I hate taking pills knowing it will destroying my livers, I hate everything about the fibromyalgia that I had to live daily. I really HATE my life the disease that I had to carry on for the rest of my life.

I HATE the fact that I could have written any of the above, the fact that I cannot get a proper breath tonight has not stopped me sobbing madly with total understanding & empathy for you all, but, I solemnly swear now that my confusion & depression regarding this demon has turned to anger which has given me a quest for answers & I will not be silenced until I get them for us all. Stay strong in mind & we will beat this together! xx

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By 10pm, I was in a state of major agitation (slight understatement!) – I had tried my heat pack on my neck with the cooling gel pads on my face, then a frozen eye pack, then some more water (maybe I was just dehydrated?) I was nauseous with the pain, and feeling hot then cold then hot. I took some anti-nausea tablets – almost threw them up. And some Valium – ditto there. I was lying on the couch and I couldn’t move because every movement hurt my head and neck and shoulders. I was literally becoming delirious with pain.

So, I called my Mommy, and I was hardly coherent (so she tells me).

‘Forget the no painkillers. Take some Panadeine Forte now!’ she said. See? I couldn’t even make that decision for myself by this stage. Then she came over (good thing she lives only 15 minutes away) and put me to bed, and rubbed my head and shoulders (softly) until I fell asleep (what a good Mommy!)

‘Good thing you’re not living in Bali,’ she says.

I reply (I can finally speak now), ’This doesn’t happen in Bali!’

I woke up this morning feeling a little more human, although the headache was still there, so I took two more Panadeine Forte. Two hours later, I could function again.

So, now I’m not sure how I’m going to stop the codeine – my doctor said some people need to be hospitalised – but I have definitely begun my search for a villa in Bali!

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The study is the first to look at the effects of yoga on cortisol levels in women with FM. Cortisol is a steroid hormone that is produced and released by the adrenal gland and functions as a component of the hypothalamic-pituitary-adrenal (HPA) axis in response to stress.

Previous research has found that women with FM have lower-than-average cortisol levels, which contribute to pain, fatigue and stress sensitivity. According to the study, participants’ saliva revealed elevated levels of total cortisol following a program of 75 minutes of hatha yoga twice weekly over the course of eight weeks.

“Ideally, our cortisol levels peak about 30-40 minutes after we get up in the morning and decline throughout the day until we’re ready to go to sleep,” says the study’s lead author, Kathryn Curtis, a PhD student in York’s Department of Psychology, Faculty of Health. “The secretion of the hormone, cortisol, is dysregulated in women with fibromyalgia” she says. “Hatha yoga promotes physical relaxation by decreasing activity of the sympathetic nervous system, which lowers heart rate and increases breath volume. We believe this in turn has a positive effect on the HPA axis.”

Participants completed questionnaires to determine pain intensity pre- and post-study; they reported significant reductions in pain and associated symptoms, as well as psychological benefits. They felt less helpless, were more accepting of their condition, and were less likely to ‘catastrophise’ over current or future symptoms.

“We saw their levels of mindfulness increase – they were better able to detach from their psychological experience of pain,” Curtis says. Mindfulness is a form of active mental awareness rooted in Buddhist traditions; it is achieved by paying total attention to the present moment with a non-judgmental awareness of inner and outer experiences. “Yoga promotes this concept – that we are not our bodies, our experiences, or our pain,” she says – this is extremely useful in the management of pain. ,” she says. “Moreover, our findings strongly suggest that psychological changes in turn affect our experience of physical pain.”

Due to all my rehab appointments (and then this wonderful holiday – Hee! Hee! I’m in Bali!) I haven’t been anywhere near a yoga class in quite a while. And unlike my friend, Thais, I am not yoga-knowledgeable enough to just do it all by myself. But, after all of this, maybe I had better get back into it ASAP!

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from FibroCenter

1. Burckhardt CS, Goldenberg D, Crofford L, et al. Guideline for the Management of Fibromyalgia Syndrome Pain in Adults and Children. APS Clinical Practice Guidelines Series, No.4. Glenview, Ill: American Pain Society; 2005.
2. Arnold, L, Clauw, D, McCarberg, B. Improving the Recognition and Diagnosis of Fibromyalgia. Mayo Clin Proc. 2011; 86(5):457-464.
3. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Questions and Answers about Fibromyalgia. Available at: http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp. Accessed April 10, 2012.
4. Arnold, L, Hudson, J, Hess, E, Ware, A, Fritz, D, Auchenbach, M, Starck, L, Keck, P. Family study of fibromyalgia. Arthritis & Rheumatism. 2004 March;50(3):944-952.
5. The Fibrocollaborative Roadmap for Change. 2009. Available at:http://www.npwh.org/files/public/FibroCollaborative%20Roadmap%20(2).pdf
6. Mayo Clinic. Fibromyalgia: Risk Factors. Available at:http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=risk-factors. Accessed April 10, 2012.
7. Synovate. [data]. Chronic Pain Consumer Survey. March 2011.
8. Henriksson KG. Fibromyalgia — from syndrome to disease. Overview of pathogenetic mechanisms. J Rehabil Med. 2003;41(suppl):89-94.
9. Wolfe, F, Ross, K, Anderson, J, Russell, J, Hebert, L. The prevalence and characteristics of fibromyalgia in the general population. Arthritis & Rheumatism. 1995 Jan;38:19-28.
10. ACPA. Fibromyalgia. Available at: www.theacpa.org/conditionDetail.aspx?id=1. Accessed April 10, 2012.
11. Wolfe, F, Smythe, H, Yunus, M, et al. The american college of rheumatology 1990 criteria for the classification of fibromyalgia. Arthritis and Rheumatism. 1990 Feb;33(2):160-172.
12. Wolfe, F, Clauw, D, Fitzcharles, MA, et al. The american college of rheumatology preliminary diagnostic criteria for fibromyalgia and measurement of symptom severity. Arthritis Care & Research. 2010 May;62(5):600-610.
13. Pfizer Market Research, Data on File. 2010.
14. Goldenberg, D, Burckhardt, C, Crofford, L. Management of fibromyalgia syndrome. Journal of the American Medical Association. 2004;292(19):2388-2395.
15. Inanici F, Yunus MB. History of fibromyalgia: past to present. Curr Pain Headach Rep. 2004 Oct;8(5):369-78.
16. Fibrocenter. History of fibromyalgia. Available at: http://fibrocenter.com/fibromyalgia-disease.aspx. Accessed April 10, 2012.
17. American Pain Foundation. About APF. Available at: http://www.painfoundation.org/about/. Accessed April 10, 2012.
18. National Fibromyalgia Association. About the national fibromyalgia association. Available at:http://fmaware.org/site/PageServerc91e.html?pagename=about_nfa. Accessed April 10, 2012.
19. ACPA. September is Pain Awareness Month. Available at:www.theacpa.org/69/Septemberispainawarenessmonth.aspx. Accessed April 10, 2012.
20. Amazon. The arthritis foundation’s guide to good living with fibromyalgia. Available at:http://www.amazon.com/Arthritis-Foundations-Guide-Living-Fibromyalgia/dp/0912423269. Accessed April 10, 2012.
21. Food and Drug Administration. FDA approves first drug for treating fibromyalgia. Available at:http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/2007/ucm108936.htm. Accessed April 10, 2012.
22. Lilly. Corporate Press Release. Available at: http://newsroom.lilly.com/releasedetail.cfm?releaseid=316740. Accessed April 17, 2012.
23. Forest Laboratories / Cypress Bioscience. Corporate Press Release. Available at:http://news.frx.com/press-release/product-news. Accessed April 23, 2012.
24. HealthyWomen. Women and men face off: Who can stand the pain?Available at:http://www.healthywomen.org/content/press-release/women-and-men-face-who-can-stand-pain-0?context=press-release/2009&context_title=press%20releases&context_description. Accessed April 11, 2012.
25. NFMCPA. National Fibromyalgia & Chronic Pain Association Releases Inaugural Edition of Fibromyalgia & Chronic Pain LIFE(TM) Magazine. Available at:http://www.prweb.com/releases/2011/9/prweb8762005.htm. Accessed April 11, 2012.
26. Pfizer Market Research, Data on File. 2011.
27. Eli Lilly. Know Fibro Initiative Commemorates National Pain Awareness Month. Available at:http://newsroom.lilly.com/releasedetail.cfm?releaseid=407413. Accessed April 18, 2012.
28. HealthyWomen. Delay in Diagnosis Significantly Impacts Lives of Patients with Fibromyalgia, New Survey Reports. Available at: http://www.healthywomen.org/content/press-release/delay-diagnosis-significantly-impacts-lives-patients-fibromyalgia-new-survey-r. Accessed April 18, 2012.