Fibromyalgia: What think ye?

In My Humble Opinion
21

On the topic of being diagnosed with something that lots of other diagnosed people blow out of proportion–I have had Hashimoto’s disease for seventeen years now, and there are a lot of ladies who just loooooove to luxuriate in how miserable it makes them. This isn’t the case for me; I take my Synthroid every day, I get my blood levels tested once a year, and I giggle when I get paresthesias. They’re kind of fun.

I also stay away from thyroid disease message boards. Reading them renders me paranoid and unhappy in ten minutes flat.

Even if you are diagnosed, you don’t have to join the club. Just keep experiencing what you’re experiencing.

22

My MIL has been diagnosed with it, and she is in quite a bit of pain almost all the time. She’s down for a while, then she can walk for a while, then she gets overly confident, falls, and is down again. Right now, she’s down. I know a lot of it is real: but also she has been chronically depressed since my FIL passed. That hardest thing on us is that it takes away from any time hubby and I could have together, because she can be needy and demanding at times.

23

I have been diagnosed with rheumatoid arthritis (through a blood test) and lupus (I know, it’s NEVER lupus!), and fibromyalgia is a related syndrome that I’ve also been diagnosed with. Also Raynaud’s syndrome. Once your immune system is compromised, there’s a lot of stuff that can go hooie with your body.

24

Except that studies show that a much higher percentage of Australians & New Zealanders than expected suffer from Vitamin D deficiency too. cite. Here people are vitamin D deficient because there’s simply not enough sunlight from November to March for our bodies to create any D naturally. In other parts of the world people are deficient because SPF 15 sunscreen reduces vitamin D absorbency by 99%, and having dark skin makes it harder to make the vitamin too, so even though they’re out in the sun they’re not benefiting from it.

25

You are skeptical because you are listening to others opinions, and allowing that to define your perception. You have to know what you are experiencing is real and they really don’t know why - that should tell you something right there. My suggestion is explore options, as they have none, and have fun trying different things. You may find something that works and also discover that the experts are really full of ‘it’ along the way.

26

I have two people in my family that have been diagnosed with Fibromyalgia. My mother and my sister. My mother well over 10 years ago (back when there was NO information or drugs for it) and my sister just this last year. Other than their diagnosis, the only common thing between them is a terrible time sleeping.

My mother is in constant pain and often times it is visible. She self medicates with pot and even then is often incapable of small things like walking and lifting even a glass. My mother also has a history of being a miserable person and uses the pain as yet another excuse as to why we should feel sorry for her. (There of course is the inevitable whole other back story there). Suffice to say, I do believe that she is in pain and whether it’s completely “in her head” or not I can’t say.

My sister is different. She is pretty anti-medication of any sort, whether it be pot or pills and does her best to keep to a strict diet to control her pain. She’s found that sugar is a huge trigger for her and tries to avoid it as much as possible. She’s much more positive and upbeat than my mother and is busy almost all the time doing something with her job, kids and church. That being said, every once in a while she will be set upon with a pain episode so brutal that she will fall down from it. I’ve seen it happen. And it brought tears to my eyes. But she always gets back up and tries to find new things to keep it from happening.

I know that it’s hard to diagnose and probably is used as a catch all when doctors don’t know what is wrong. However, I honestly believe for both of them, there IS something there. A big part of the stigma is, IMHO, how people deal with it.

27

“Except that studies show that a much higher percentage of Australians & New Zealanders than expected suffer from Vitamin D deficiency too. cite.”

During winter, in the more southern states or NZ. Most are simply ‘under normal’ than deficient to the level you describe.

Still fair point, I guess it only needs to be a few percent of the population getting very low to result in possibly large numbers. You’d think this would have been pretty easy to identify as a causal factor if its that simple though, its about as easy a treatment/prevention regime as you can get.

Otara

28

I’ve had fibro since 1989. I was not officially diagnosed until 1993. Those were four very ‘interesting’ years.

I was lucky. I found a very good doctor, and with his help plus a lot of trial, error, and research over the years, I learned to manage the condition.

I currently have a challenging career in the U.S. space program, I pull overtime when I need to, and I can power-walk 3.5 miles, uphill, wearing weights, on my office lunch hour.

Fibro is not the end of the world. But it takes a lot of work to get a handle on it. One has to identify and avoid personal triggers, get a healthy diet and supplement with vitamins, and medicate judiciously as required (no Lyrica for me; I take very small doses of several older drugs which have worked best over the years). And time must be made for sleep. I do not make social engagements on workday nights. I exercise, and I get a back massage once a week to keep my most irritable muscles loose.

I think the biggest thing is not to despair - the condition will not go away, but it can be managed and life can be good again. The next biggest thing is that one must be willing to give up whatever behaviors or preferences stand in the way of recovery.

I have also found that my symptoms have gradually eased somewhat as the years have gone by.

29

My wife has fibromyalgia, and swears by the guaifenesin protocol put forward by Dr R. Paul St. Amand.*

*For informational purposes only. Not medical advice or an endorsement of a treatment.

30

If she hasn’t been evaluated for gout, that might be helpful too. She could have both going on.

31

Not sure if there is any study done on it, but I had a brief spin with restless leg syndrome post operatively thanks to the damned leg massaging pneumatic thingies … 24 hours, and I had the classical tingly leg that literally forced me into twitching. One week of gabapentin knocked it out. I remember during the day, my legs just plain ached. I had discussed the RLS with my doctor and I posited that the nerves in my legs were just overstimulated and to try a week of the gabapentin. I vaguely remember reading that when your nerves are stimulated, one thing that happens is that some hormone is released into the muscle cells surrounding the nerve fibres. What if fibro is some form of overstimulated nerves firing, releasing the hormone in the muscle cells, but the hormone never really fully clears because the nerves are constantly firing? And the various treatments that work for people are simply getting the nerves to stop overfiring, giving the hormone a chance to be cleared out of the area and letting the cells ‘relax’?

32

Aruvqan, I think you may have a good point here. I have read recently that fibro and restless legs seem to have a connection. Cite: Fibromyalgia: Symptoms, Causes, Diagnosis, Treatment. If overstimulated nerves were the proximate cause of the pain, it makes sense that a number of different therapies would all help in one way or another.

33

I was told I had FM a few years ago and doubted the diagnosis, too. Over time, I have come to realize it was right on target. I figured it was a diagnosis the doc could make without thinking too hard and a way for the pt. to score some drugs. I sleep poorly (which can be cause and effect), have foggy brain, fatigue etc. Magnesium and vitamin D help, as do massages and nice hot baths. Yes, it’s probably psychosomatic but that doesn’t make it any less real. Does give you a little bit to go on, cause-wise. Try not to be dismissive this early in the game. It’s difficult to be really self-aware and coming to realize some truths about yourself can be a painful process, but worth it. I manage pretty well with the above plus tylenol and ibuprofen, but by no means is this everyone’s experience. Good luck to you.

34

Hi! First and foremost, as I was discussing a different topic with a friend, if there is something bothering her and it is affecting her life, then I told her it didn’t matter the diagnosis, she still needed treatment.

With that said, I have been diagnosed with narcolepsy, a chronic neurological disorder that affects alertness and wakefulness. I had been suffering for many years before getting a confirming diagnosis in May of this year via an overnight sleep test, polysomnogram and what I affectionately refer to as the “Cat Nap” test, the MSLT - Multiple Sleep Latency Test. I also have Bipolar I disorder so hopefully I can make a contribution from the medical and psychological sides.

In early 2009, I was diagnosed with Fibromyalgia. There is the standard 18 point tender points that when pressure is applied, the pt experiences significant pain. My understanding of Fibromyalgia is that it is that the individual has misfirings in the brain that magnify the pain perception. It’s not that we have a lower pain threshold. Actually, it may be quite the opposite since I personally know that I have dealt with other pain (like foot surgeries, etc) and have been able to tolerate those.

For me stress, emotional and physical, and certain foods like aspartame are both big triggers as is a lack of quality sleep which I view more as a symptom. I can either be fine, in excruciating pain, or anywhere in between. Then there’s the fatigue and the brain fog, and the difficulties surrounding sleep. FM pts often have clouded thinking (brain fog) and memory problems. In FM, the pain is usually bilateral. For me, it tends to flare, come on suddenly and intensely, and eventually resolve for a time. I’ve had to take time off work and even lost a job because of the difficulties.

I have tried physical therapy, I exercise daily, take vitamins, supplements (magnesium & Vit D, selenium, fatty acids, etc), and medications like gabapentin and Amrix (timed release Flexiril, a muscle relaxant), use a TENS unit which is an Electrical Nerve Stimulation that they use in chiropractors offices (tried that too). I’ve joined the National Association and get support from groups. In closing my philosophy is to try anything that works, is safe, and healthy. All the best.

35

This story has been at the top of my Google Health News feed for almost a week. Yoga and tai chi of enormous benefit to fibromyalgia sufferers:

http://www.foodconsumer.org/newsite/Non-food/Lifestyle/yoga_tai-chi_better_for_fibromyalgia_than_standard_care_17101008.html

If you decide to pick up yoga for the first time, I highly recommend finding a class rather than using videos. An instructor will get you to do the poses correctly… which is often an unpleasant experience the first few times.

36

In my experience, fibromyalgia is more a term labeling a variety of symptoms than it is a recognisable disorder in itself. As far as I can tell all it means is “you’ve got pain and other symptoms and we don’t understand where they’re coming from”. It’s what’s left when everything else is ruled out, and it doesn’t really explain much. Still no real knowledge of what causes the symptoms.

The ways it manifests and the treatments vary considerably from person to person, so while as a diagnosis it may have some use in narrowing down treatment options, there’s still going to be a lot of roulette being played until something is found that works for you. There are various medications and supplements that are good for certain aspects of it – anti-inflammatories, vitamins, minerals, herbs, etc. – which you might want to look into.

Some things I’ve heard of that seem to help a lot of people with fibro is cutting out the usual suspects in the diet: sugar, wheat, dairy, caffeine, additives, etc. While I’ve done my best in terms of additives I still haven’t forsaken sugar or wheat, so I can’t yet offer my own experience in terms of how well that works. :wink:

37

I’ve heard that too, about the sleep, and it fits in my family because a lot of us with fibro also have narcolepsy, which mucks about with the quantity and quality of our sleep. I would also suggest that severe unhappiness is not conducive to good sleep either, so that may have something to do with the possible correlation you’ve heard of there.

38

I have rheumatoid arthritis. One of the lovely bonuses that came with it was recurring bouts of fibromyalgia. It’s real, and it hurts like a motherfucker. It was bad enough that my joints hurt. On the days when my muscular system joined in, I seriously considered suicide.

Fortunately, Mr. Flexoril turned out to be a very good friend. I would take a Flexoril at night, PRN, and would wake up in the morning feeling much more like living than I did the night before. Mr. Humira has been my bestest friend of all. My arthritis symptoms have been reduced to almost zero by Humira and now I rarely take a Flexoril; usually after I have overdone it with a Taekwondo workout earlier in the evening.

Fibromyalgia is very real.

39

Hello, fellow narcoleptic! :wink: I haven’t met many outside of my family.

40

But there are a lot of depressed people who ARE depressed and don’t respond to traditonal depression drugs.

I know of one gentleman who wasn’t helped by any of the “new classes” of anti-depression drugs. He finally found Nardil, which is one of the first antidepressents used. It’s not used a lot today, as of it’s side effects, but it worked for him and well.

So they might be depressed and not following the correct route. Sometimes it will take many, many different paths to find the right medicine for you.