Handling Fibromyalgia?

Factual Questions
1

Several years ago, a friend of mine got into a particularly spectacular car accident involving her car, an overpass, and 9.81m/s^2. Miraculously, she survived, but she’s lived with some kind of pain ever since, and seems to have gotten rather worse.

Now, years after the fact and after having been to numerous doctors and therapists, they have finally come to the realization that a good bit of her problem was that, in fact, she had Fibromyalgia. And it’s permanent.

I am of course not seeking medical advice on her behalf – she has plenty of medical (and to an extent theraputic) advice to lean on and I’m sure they will prescribe her appropriate medication and counsel to deal with the pain. It will be a practical, medically sensible advice, which is what she needs most. What I think she would like however, is some practical, human experience advice from anyone who’s had to deal (directly or indirectly) with this sort of thing. Although she’s into the whole accupressure thing I wouldn’t want to pass her any homeopathic quackery unless there’s at least a significant body of anecdotal evidence that it actually works.

So what sort of things can she do to cope outside of prescriptions and accupressure? Are there any physical excersizes? Activities? Herbal teas or particular foods known to help?

2

Not-Doctor Taran’s advice for fibromyalgia sufferers, gleaned from over one hundred man-years of familial experience:

  1. Take your meds.

  2. Drink lots of water.

  3. Stay physically active. The nature of the activity almost doesn’t matter: we’ve variously tried walking, mountain climbing, and several kinds of martial arts. I expect that full-body activities (e.g. martial arts or dance) are best, but we haven’t set up double-blind studies or anything.

  4. Don’t fight the fibro fog. Every once in a while the constant low-grade unpleasantness takes over your brain for an hour or two. We’ve never found a way to dispel these; just wait for them to go away on their own, and try to avoid writing critical code or operating heavy machinery.

  5. Think seriously before having children. There’s some evidence that fibro is genetic, and the first symptoms can appear at terribly young ages. My uncle’s case is severe enough that he divorced his wife rather than give in and have children with her; he was unwilling to subject his children to the sort of suffering he’d experienced. He has the worst case in the family, though.

While I’m here, I have to pimp this book for fibromyalgia sufferers. The author is the guy who gave me the medicine I’m taking now, and I appear in it as one of the case studies, so…

3

Taran: Are you having good results with the guaifenesin protocol?

4

This is a very complex condition, and there is tons of information, some of it actually accurate. :slight_smile: Start by googling “Fibromyalgia” and start sorting through the hits.

I have had it for several years. The most common thing among sufferers is that one goes from doctor to doctor to doctor, most of whom don’t even want to see you, and others who will suggest it is all in your mind. The best to help are rheumotologists, who are more familiar with fibro than most other specialists.

In cannot be cured, but it can be put into remission, but the protocol is NOT easy or simple. For those who suffer enough, it is well worth while.

There is only one physician that I know of who has found a way to control it with guaifenesin, and has written a book called What Your Doctor Won’t Tell You About Fibromyalgia It is a life saver if you are willing to follow through and can find a doc who will help you.

Check out:
R. Paul St. Amand, M.D.
4560 Admiralty Way, Suite 355
Phone (310) 577-7510
Marina del Rey, CA. 90292

I can provide more information if you or your friend wants to email me, but basically one has to experiment to get the right dosage (there are no side effects at all, it is used to control coughs), and it may take a long time to provide relief.

I was so tired, achey, weak, unable to sleep, etc that could hardly function. It took many months to get the right dosage, and now as long as keep taking it, am symptom free. Many others have had the same results.

However, among other things that complicate it, is that using guai, you absolutely have to cut out ALL sylicilates such as asprin or anything contain them. They are very common in cosmetics, toothpaste, sun screens and hundreds of other products.

On some of the online support groups, many women insist it is just too much trouble to go through all this, yet continue to complain about how horrible firbro is. Either you want to get well and will do anything to accomplish this, or you don’t and have to live with it.

There is a vast amount of material available about the disease which you can find online. Email me for more info if you want.

5

First, let me say Good On You for wanting to help your friend! Other books that I have found helpful are:

New Hope for People with Fibromyalgia
It tells about the ongoing research by Dr. Muhammad Yunus at the University of Illinois and many others.

and

Fibromyalgia for Dummies
Lots of tips for friends who want to help.

Also, I will reiterate:

Take your meds.

Get good sleep.

Eat a balanced diet.

6

I have a friend with fibromyalgia who told me that her pain was greatly improved when she started eating a raw, unprocessed diet for breakfast and lunch–dinner was still “normal food,” but she switched to eating fruit and salads earlier in the day. I found this citation backing up this experience.

She also said acupuncture worked well.

7

Ummm…some of us don’t sleep for weeks at a time on the stuff and it actually is not advised for people on lots of other drugs or herbals or with several common diseases. YMMV, but I can’t take it at all ever if I want to be a functioning member of society.

I have a friend who met with Dr. Selfridge and followed the advice in her book Freedom from Fibromyalgia and is much much much much much better. Unfortunately, this book and the one previously linked are at odds with each other in many aspects of treatment and therefore, there are very enthusiastic supporters of each. What lots of people agree on is that there tends to be a mental component (not that fibro is a mental problem, but that people with a certain mindset tend to get fibro and mental state can make you physically worse). Also, that routine is good, sleeping and getting up at a given time every day, eating a well balanced diet, moderate excercise when you feel like you can. Also, eliminating stress from your life where possible and learning techniques such as meditation to deal with unavoidable stress.

As a friend, I think that you should be supportive of whatever course of action your friend chooses, find ways to help her when she needs it (like bringing over dinner or listening when she needs an ear) and accepting that when she says she can’t do something because she is tired or sore or whatever, she really means that she can’t do something. Conversely, fibro can be isolating and you should try to keep your friend as social as she can be without compromising her health. I also tried to limit the amount of my stress that I shared with my friend since she was trying to avoid stress.

8

Thanks for the answers so far – I have passed them along to her, hopefully she will find some of it useful.

9

Nonsuch: Yes, very good results. I’m not familiar with the book xbuckeye mentions, though.