I would like this thread to be a place where we can post studies about fibromyalgia (as well as related disorders) and share illness management strategies as well as give/receive support. I especially welcome any input from those with science/medical expertise.

Fibromyalgia is a disorder that causes chronic pain, fatigue and cognitive changes as well as other symtoms. It is typically treated by rheumatologists, but is now considered to be a neurological disorder. Studies have shown differences in the brains of those with fibromyalgia. There is a debate about whether or not CFS, aka myalgic encephalomyelitis, is related to fibromyalgia.

I have had this disorder for 18 years with symptoms much worse the last 3 years. I also have hypothyroidism, premature ovarian failure and tachycardia. Structural heart problems were ruled out and my rheumatolgist says the tachycardia is most likely due to autonomic dysfunction that can also be found in those with fibromyalgia.

The chronic pain and fatigue are really hard to take. The cognitive changes make a bad situation much worse. My short term memory and word recall are pretty bad. I have a much harder time with spelling and feel like my IQ has dropped which is very distressing at age 44. I do work fulltime, but feel like I am hanging onto this job by a thread and I have no social life because I use every bit of energy I have to work.

I will go see if I have bookmarked any studies and will post them soon.

Here is an article I had bookmarked about fibromyalgia:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1794529/

Here is another that discusses autonomic dysfunction and fibromyalgia:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2206360/

Another one:

http://www.touchneurology.com/articles/ ... nt-thunder

One proposing FMS is caused by a mismatch in the sensory and motor system:

http://www.sciencedaily.com/releases/20 ... 220054.htm

This talks about gray matter loss and premature aging of the brain:

http://www.jneurosci.org/content/27/15/4004.full

Here is one about dysautonomia, fibromyalgia and reflex dystrophy:

http://arthritis-research.com/content/9/4/105

Fibromyalgia sounds like a terrible illness in many ways - sometimes I remember how lucky I am to not be in physical pain.

I'm afraid I've no advice to give as I don't have any direct experience of it. A school friend of my youngest son (15 yrs old) has recently been diagnosed with CFS. In his case it seems to be a post viral thing triggered by a bout of glandular fever. He's gone from being extremely fit and active (swimming champion) to almost nothing and isn't able to attend school. This class of diseases seems to be so poorly understood, and seems (I don't know the stats for sure, this is just an impression..) to be getting more prevalent. I would say it's ripe for some increased research funding.

Best wishes Dawn - I hope you continue to be able to manage your condition and see some improvement

CFS sufferer for 3 years this month. A poorly understood illness with a grossly underfunded research system in place. We're still getting over the "mental illness" school of thought which even some doctors still hold. I encounter ignorance on an almost daily basis, sometimes it's harder to deal with than the illness itself.

Whilst my doctor is understanding I've refused all visits and referrals for treatment, since they're all bloody useless.

http://www.sophiaandme.org.uk/ Read this if you want to know how bad things can get for sufferers.

Dawn wrote:

The chronic pain and fatigue are really hard to take. The cognitive changes make a bad situation much worse. My short term memory and word recall are pretty bad. I have a much harder time with spelling and feel like my IQ has dropped which is very distressing at age 44. I do work fulltime, but feel like I am hanging onto this job by a thread and I have no social life because I use every bit of energy I have to work.

Ditto that. It obviously doesn't show on this board, but I stumble and forget words all the time. I have to spell check constantly.

I'm the same with work. Work or social life is my choice, as I get no support from the government or welfare system I have to work, which is no doubt damaging my body even further.

Gosh guys, I'm so sorry.
I know how you feel, believe me, I understand completely because I'm getting to almost wheelchair mobility now.

It started when I was very young with digestive problems. And the horrible thing is that when you have tests done, they come back "normal" or "negative" or "within the normal range" so you walk away feeling that nobody believes you and when you're feeling well they say "you don't look ill!"

I don't normally like to talk about it and I tend to just let it go but seeing that this is for technical reasons, I'll open up a little.

The digestive problems landed me in hospital for observation and tests. I was diagnosed as having "anorexia nervosa" and put on watch, right outside the nurses' station. They suspected that I was actively throwing up because I was like a stick figure.

They watched me eat, and eat, and suffer with IBS, and when I didn't throw up, they started looking a little closer.
Nothing, not a thing wrong, so they sent me home. The physician said that maybe it was psychological and that I needed to leave home, so I took up nursing. This was a good thing because it helped me learn about how my body worked and opened the door to academia for me. (that's a whole other story).

I did my nursing training but again, for reasons that aren't important here. I moved on.
I married, started having babies and when I complained of pain, was told "it's in your head."

Thirty years of chronic pain and serious bouts of depression and a few messed up relationships later, I finally got to see a rheumatologist when my DH insisted because I couldn't do my job without experiencing pain, even picking up something off the floor would get me bursting into tears.

My physician recommended that I see this man: Dr Patrick Dessein.

He is recognised as one of the best authorities on fibromyalgia and related diseases.

He put me onto a programme of steroids and a high protein diet and recommended low impact exercise, absolutely no aerobics or road running. I was fine for about five years, but then the symptoms became bad enough for me to be put on medical retirement. That was about 12 years ago.

My observations:
While I accept that my experience and observations are "not science" being on the inside and having lived with symptoms for almost half a century, I think I'm qualified enough to offer my opinion on what I've noticed.

1. It seemed to me that there might have been a familial connection. Two of my sisters complain of a mild form of what happens to me. I don't think it's genetic, I think there may be a link in a family due to something in the way the family is fed or how the food is prepared, and in my case, add to that an ignorant mother let loose with old wives' tales about how the body worked. We used to be fed a weekly dose of "opening medicine" a euphemism for laxatives. These old-fashioned women were taught, or believed, that an empty bowel was a healthy one. So once a week we got Scott's Emulsion and I forget the name, but some horrible-tasting liquid laxative. I believe that this over-dosing of laxatives was responsible for mine, and my sisters' IBS in adulthood. So while I say a possible familial connection, it could simply be that the family being fed the same thing, a "nervous" bowel could develop the symptom. We know more about bowel habits today. i.e. that some children go every day, sometimes more, and others, every other day. Children should be fed a healthy balanced diet with as few preservatives or artificial flavours as possible, and they shouldn't develop problems. If they do, then a paediatrician should be consulted, not their grandmother.

2. There is a definite cognitive aspect to it. Depression, possibly diagnosed bipolar disorder, or as hyperactivity which doctors will diagnose and treat with ritalin. If the chld is hyperactive and has IBS and poor concentration, it's worth looking at CFS as a possible cause,. If it's lack of concentration and hypersomnia, and IBS, with bouts of restlessness, mention CFS. In my case, I had all of them. I could sleep around the clock, then rush off to do one thing, leave it lying to do something else and then eat a whole packet of marshmallows just before wolfing down a whole family dinner, and then complain that my neck hurt.

3. Forgetfulness, and as Dawn mentioned with words especially. And it's getting worse as I get older. I know the difference between its and it's but I often find those errors in my typing and correct them, but with other people it just doesn't happen. I forget where I've left things, so I have computer programs to remember for me. I can remember to make a note of where I hide things from myself and I have to keep a very orderly house otherwise I'd lose everything. At one time, I lost three ID documents (a very important document in SA, we cannot do anything without it) in the space of a few weeks. And when I lost things they're gone forever. The memory of even having them is lost. So I write everything down, where I file my papers and where I've changed cupboards around. And all my passwords are recorded, because I can't remember them. It's also selective memory because i don't have a problem with numbers and dates. I can remember dates but not names, and words. Dictionaries and Wikipedia are my friends.

4. Pain. It's not arthritis and joint swelling and it's not stiff muscles. It feels like arthritis but the joints don't swell but they hurt like hell. But not only the joints, your whole body hurts. You can't rest your feet on a pillow without your heels burning. You can't cross your legs, or have a massage. or let a strange person cut your toenails (you can't get there to do it for yourself) because they insist on grabbing your ankles and when you scream in agony, they say "sorry, did I hurt you?" You don't hug, you don't shake hands, it's all too painful. I've figured something out with the long muscle problem. It seems that they lock in a position. Say you're sitting down, they stretch on one side and contract on the other. When you get up to walk, they have to switch, the stretched ones have to contract and the contracted ones to stretch. This is a virtual impossibility for CFS/CPS sufferers. People make you sit in the back of the car and then whine when it takes you five minutes to get out of the seat. And they say "you're not old!" Walking gets more and more painful because you're putting weight on your feet, which are already hurting.
Then there's the pains that hit you for no apparent reason. Your muscles cramp or you get shooting pains in your toes, or a toe, or a leg, sometimes both legs. Just for fun in case you thought you were having a pain-free day.

You get headaches, they're like migraines only a little worse and can last for a minute to a week. For me, it's one spot on the left of my head. There's nothing there, it's been scanned over and over in the last 20 years. Nothing, it's just pain.

5. Hypersomnia/hyposomnia. Some nights you sleep for 10 hours, others for 2 or not at all. There's no predicting what you'll do on any particular night. So you go to bed every night hoping you'll sleep and if your family are sensitive they'll let you sleep, if not, they'll wake you up because they need feeding or to be taken somewhere, or the phone rings and nobody bothers with it, so you get up and then don't sleep again while they're happily having their 8 hours. I'll talk more about this later.

6. Digestive problems. It can be diarrhoea or constipation, or a combination of the two. There seems to be a coeliac (spelling?) element to it. In other words a refined starch problem. Definitely not keeping your bowels regular is a severe problem.

7. Getting back to the cognitive problem aspect, there is irritability. Well who wouldn't be irritable if they lived with chronic pain and especially if they didn't know when the next pain would strike. I'm definitely a nicer person when I'm feeling well, but I also have a very quick temper and I'll rant or get nasty with very little provocation, and it can simply be that "I had the thing in my hands a minute ago, where the hell is it" and I'll go off on a tirade about everything else as well while I'm on a roll. (Thank the FSM for my sense of humour).

Now what helps?
1. Diet. Very definitely Dr Dessein's ideas about food work. Avoid all preservatives and artificial flavourings. Try to cook most of your food yourself and don't add MSG or artificial anything. He advocates a high protein diet, but that doesn't work for me. Apart from the ethical aspect of veganism, I find that a vegan diet is definitely doing it for me. If I eat a pizza or cheese sauce, then all the bells start ringing and I go off on a pain bender. I've been vegetarian for about 2 1/2 years now and have noticed a definite improvement in my pain management. It's not gone but it's manageable.

This is Dr Dessein's diet (modified a little since I haven't seen him for a while because I don't live near him anymore):
Drink lots of water. Try to avoid alcohol, or over-indulging in alcohol, tea and coffee. You can drink them but in small amounts.
For breakfast: High fibre component, a protein component and a fruit. I combine the three by making a smoothie with soya milk and muesli.
For lunch/dinner: A protein, a small amount of high fibre starch and a protein. with a salad or cooked vegetables.
An example would be a small baked potato, a grilled chicken breast and a green salad. Or a steak, a small baked potato, and a salad.
The rule is moderation. You can go slightly higher in protein, but be aware that animal protein rots in your gut and could cause an irritable bowel attack. I find that eating vegetable protein is better because it works with the vegetable portion of the meal to get the gut moving. A healthy bowel doesn't get cancer.
My typical meals are a bean sausage and brown roll hotdog for lunch and lentil curry with brown rice with chopped fresh tomato and onion on the side. Or a stir fry with Chinese vegetables, "chicken" soya strips and noodles or rice, or a pasta dish made with home made tomato sauce.
There is a definite improvement if you can get a balanced diet.

2. Anti-inflammatories. Speak to a doctor about these. They can damage your stomach so always balance the side-effects with something to protect you against damage. I use Lansoprazole 30mg daily. Discuss this with your physician. If I don't take this, I develop the typical digestive problems of long-term anti-inflammatory use, one side effect of which is a bleeding ulcer. So always get a professional opinion about using these drugs. Remember I am not a physician, I'm merely stating what works for me.

3. In the very short term, a daily quinine pill (anti-malaria pill) helps to get the pain under control. But be aware that these things can damage your eyes (gin and tonic much) so use them with extreme caution. I took them for a year because I felt I was already old and wearing glasses was a small price to pay for being pain-free.

4. Then there is methatrexate. Again, speak to a physician about this. It works. It breaks the extreme pain, gets you on track but it involves blood tests on a regular basis if used for more than I think 4 doses. It is a very dangerous drug, I used it for a few cycles for three months at a time, but had to go for blood tests. It was the only way I could work, drive a car and run my family. My kids needed an education and I had to support them, so I used this drug to get there. I've only used it once in the last ten years and that was because I thought that I could think myself out of pain so I stopped taking all my pills and also stopped walking.

5. I went through a stage when my adrenal glands weren't functioning so I had to go onto cortisone: Cortisol. Again, to be used only under the care and direction of a physician.

6. Finally, avoid refined starch and sugar and particularly a combination of both. There is definitely something in this. About three weeks ago, I entertained some long-lost friends for lunch. While I made sure that everything I ate was OK, I went overboard eating dessert. I paid for the cream spiked with castor sugar and the carrot cake with cream cheese frosting, almost with my life. I stopped functioning for almost a week and suffered the most unbelievable pain in every part of my body. And I slept for three days. I've sworn off dairy and sugars except for the occasional chocolate, and white bread. White flour, and particularly white bread laced with garlic butter is poison for CFS sufferers. I don't understand the chemistry, remember I said I wasn't a scientist, but I do know now that part of the chronic fatigue I've lived with for all my life, and the pain has been as a result of my predilection for anything made with white flour: buns, crispy rolls, cakes, tarts, desserts, brownies, chocolate cake, you mention it, I'll eat it and sleep for three days afterwards. I noticed this when I started having severe attacks around Christmas. It used to be a time of special feasting for my family for reasons that don't matter, and I would bake in preparation for it, taste everything I made (like caramel fridge cake nom nom) and then pig out for the week after Christmas along with the kids. Then I would pay. It's not sugar on its own (I have sugar in coffee) it's the combination of refined starch and refined sugar. For what it's worth, give it a try.

I apologise for the long post but I really do want to help on this one, and I'm also looking for ideas that might help me avoid having to use a wheelchair to go to my favourite shopping mall for as long as I can. (And I want to go to Scotland one more time).

Thanks for the post Agrippina, have only skimmed but will have a proper read when I can.

I have "digestive issues" but as a result of CFS.

Paul, that link about Sophie is outrageous. Dealing with people's ignorance and mistaken judgements about something they don't understand is awful enough without medical professionals doing active harm. I don't see myself getting assistance either. Disability here is low paying and extremely hard to get. If you get it you have to wait 2 years to qualify for health insurance via medicare. People have to apply and fight for years to get it usually. Fibromyalgia is a tough diagnosis to get disability for although I do know some people do get it eventually. I am doing my best to keep working, but it is a struggle every day.

twistor59, thanks so much. I hope your son's friend can get more function back and feel better. I am so hoping research will increase and we can get some answers that might lead to treatment that works.

Juliuseizure, it is a horrible thing to have. I have not had a pain free day since this started. I can't remember what pain free is like. I do take pain killers, but they just take the edge off. Without them I couldn't funtion at all. It really, really sucks.

Agrippina, I am so sorry you are suffering with this also. Thanks for sharing your experience and the treatment and diet info. IBS is always listed as being common with fibro when you read medical literature. I have similar digestive issues, but the worst part for me is the pain and now the tachycardia. The meds you mentioned are new to me. I will ask my doctor about it. I have tried the newer meds like Lyrica, but cannot take it due to side effects. I take tramadol for pain during the day with one vicodin and a sleeping pill to sleep at night. The doctors are watched closely about prescribing controlled meds so I only take the one vicodin and it really isn't enough. They don't work very well, but they do help. I cannot take several other meds we have tried because of the tachycardia. Research is showing that depression is no more common in fibromyalgia than other populations though we certainly have enough stressors from the illness to get depressed! I hear you about the irritability. The pain keeps me on edge and having to put on my "game face" for work as a hospice counselor can be tough.

Another thing re: Agrippina's post. My cortisol was found to be high (often in fibro it is low) and my insulin growth factor (I think that is what it is called- it is what stimulates growth hormone production) is low. Apparently, endocrine abnormalities are very common with fibro. I hoped when they found I had hypothyroidsim treating that would help the pain and fatigue, but I haven't noticed any change. I hoped getting on hormones would help since I had premature ovarian failure, but no. What I thought might be hot flashes is apparently sweating that happens when my tachycardia flares up. I often wake with a heartrate of 130 bpm. Weird!

Re: pain killers - Opiods are not very effective for neuropathic pain as opposed to nociceptive pain. This is probably why my little vicodin pill is not so helpful. Myofascial pain that occurs with Fibro is a mixed pain of both types. I have also read somewhere that people with fibro have less opiod receptors and that opiod receptor blocking drugs can help (which seems counterintuitive).

I am very interested in the neuroplasticity research related to phantom limb pain using mirror boxes to trick the brain into resetting somehow and relieving the pain of the phantom limb. I am hopeful that something along this line could help with full body chronic pain.

Dawn wrote:Another thing re: Agrippina's post. My cortisol was found to be high (often in fibro it is low) and my insulin growth factor (I think that is what it is called- it is what stimulates growth hormone production) is low. Apparently, endocrine abnormalities are very common with fibro. I hoped when they found I had hypothyroidsim treating that would help the pain and fatigue, but I haven't noticed any change. I hoped getting on hormones would help since I had premature ovarian failure, but no. What I thought might be hot flashes is apparently sweating that happens when my tachycardia flares up. I often wake with a heartrate of 130 bpm. Weird!

You see, this is the thing, apart from the pain, and the digestive system involvement, no two people are the same. Which is why they call it a syndrome rather than a disease and why it's so difficult to treat.

I have developed a heart murmur, but that could be as a result of the drugs as well. I've been using anti-inflammatories for so long now that there has to be a pay-off.

Try some diet changes, avoid perservatives and additives and artificial flavourings. I don't even use commercial ketchup. I make almost everything I eat myself. And when I do eat out, I'm fussy about what I eat and it's mostly "french fries" and salad.

I've been tested for thyroid problems but nothing there. I am starting to have urinary tract problems and high blood pressure now but that could be age related, my heart rate is not abnormally high.

The forum Cure Together is a great resource for conditions not well understood. This is a recently posted plot of interventions either popular, effective, or both for chronic fatigue, which overlaps with FM:

A less recent plot, this on FM, from a small number of patients:

Anti inflams do not work for me. The only thing that works is Ibuprofen, my doctor won't give me painkillers as they can be addictive. I've asked for a few a month just for when it's really bad but no joy. Bastard!

I suffer badly with acid reflux so I have to take Omazeprole daily. I also suffer quite badly with hot flushes!

The only thing that shows up in tests is a rather low functioning immune system, that's it. My blood pressure is usually good but I recently became overweight, obese in fact and it started looking bad for my age. I've now lost a lot so hopefully there's an improvement. Other than that....you'd think there's nothing wrong with me. I was going to the gym 3 times a week before I become ill but after 3 years all the muscle I'd gained has gone, in a few years time I'm not sure how well I'm going to look.

I tend to actively avoid talking about it, even though I've mentioned it on here a few times, it's just not worth the hassle.