Fibromyalgia Links and Info

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I can relate to the long search for answers. My search for answers started as early as 1989. I didn't start getting close until a few years ago and my last primary HCP still went through three years of "process of elimination testing" before using the word fibromyalgia and sending me to a Rheumatologist. As soon as I started researching the syndrome, there was no doubt in my mind that I've had FMS since my late teens. (I abbreviate the illness as FMS but I don't think that's standard.)

I just finished an excellent book called Fibromyalgia by Don L. Goldenberg, M.D. He's the Chief of Rheumatology at Newton-Wellesley Hopsital and teaches at Tufts University. He's been a leading fms researcher for decades. This book helped me understand more about the illness than anything so far.

Be wary of any sites that claim to have cures or want to sell you anything.

REPUTABLE MEDICAL LINKS:

Fibromyalgia at NIHM/Medline:
http://www.nlm.nih.gov/medlineplus/fibromyalgia.html

FMS info from Mayo Clinic:
http://www.mayoclinic.com/invoke.cfm?objectid=96E57CAC-F3E9-468B-8824304CCE012FD1&dsection=1

Arthritis Foundation:
http://www.arthritis.org/conditions/default.asp

This site identifies Clinical Trials that are recruiting:
http://clinicaltrials.gov/

ARTICLES:
An article on Restless Legs:
http://www.dcmsonline.org/jax-medicine/2001journals/March2001/RLS.htm

An article by Goldenberg on effective treatment:
http://www.immunesupport.com/library/showarticle.cfm/ID/3943/

Understanding Chronic Pain and Fibromyalgia, Review of Recent Discoveries:
http://fmaware.org/doctor/bennettpain.htm

SUPPORT GROUPS:
http://www.spokanefm.org/defining.htm

National Fibromyalgia Association:
http://fmaware.org/about.htm

Goldenberg advocates patient support groups but cautions people to be choosy and careful, to avoid support groups that are prone to turning into big whine sessions and/or that promote a lot of pseudo-scientific cures that are not backed up with solid research.

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Here are some other good sites: https://www.fmnetnews.com

http://www.rheumatology.org/public/factsheets/fibromya_new.asp?aud=pat

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A book that comes highly recommended by fibromyalgiacs at another site is The Fibromyalgia Advocate by Dr. Devin Starlanyl. It can be ordered at http://www.amazon.com/exec/obidos/tg/detail/-/1572241217/qid=1129828641/sr=1-2/ref=sr_1_2/103-8627257-2811859?v=glance&s=books

eta: This book is AWESOME! Devin Starlanyl's website is also an incredible resource: http://www.sover.net/~devstar/


I have become very interested in Dr. Patrick Wood's Dopamine Theory of fibromyalgia. This theory posits that FMS is related to damage to the hippocampus and its resultant lowered production/processing of dopamine. According to Dr. Wood's website, "The hippocampus plays a critical role in learning and memory, pain perception, and the ability to handle stress. The hippocampus also controls the brain's ability to manufacture and release a chemical called dopamine, which also plays a critical role in pain perception and in memory and concentration" (www.lifebeyondpain.com).

Dr. Wood has actually found, in scans of some people with FMS, that portions of their hippocampus were actually shrunken.

As a result of his research and that of others (Andrew Holman, for one), the drug Mirapex, a dopamine agonist approved for use in Parkinson's Disease, is beginning to be prescribed off-label to FMS patients. I have been taking it for several months and have noticed significant improvement in my symptoms.

Here are some articles about it:

http://www.fmpartnership.org/Files/Website2005/Learn%20About%20Fibromyalgia/Articles/Dopamine.htm

http://www.fibromyalgia-symptoms.org/fibromyalgia_neurotransmitter.html

http://www.webmd.com/content/article/109/109243

http://www.fibromyalgiasupport.com/library/showarticle.cfm/ID/6783

There is a book about it called The Fibromyalgia Cure by Dr. David Dryland. I ordered it from Amazon.com back in June, but it keeps getting backordered, and I haven't been able to find it anywhere else.

The first article I linked is awesome, though. It was written by Dr. Andrew Holman, who did the first major study on the use of Mirapex with fibromyalgia patients.

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I'm sorry I didn't get back to you about this sooner. Now I'm all worn out from posting on the dermatillowhatever thread ;0

I've been on Cymbalta for a couple of months. I'm not sure why your doc would prefer Effexor over Cymbalta if she's concerned about nursing, as Effexor is one of the lesser preferred anti depressants for nursing moms according to Dr. Hale.

The main concern with Cymbalta is that it's a newer drug so there's just not any evidence out there of whether or not it's good or bad for nursing infants. It's currently classified as L3.

I'm desperate enough for solutions that I elected to try it even though I am still nursing.

My fibromyalgia specialist swears by Lexapro, and I took that for quite awhile. I still wanted to try Cymbalta, and I'm happy with the switch. Lexapro triggered overeating issues in me, they are not so bad with the Cymbalta.

Here is a link on antidepressant info where you can find a seminar discussion by Dr. Hale. You should go over this with your doctor.

http://www.breastfeeding.com/forum/showflat.php?Cat=0&Number=27429&an=0&page=0#Post27429

I don't know if you've seen this before, but here's our archive link on Fibromyalgia resources. I haven't looked at it in awhile, I may have more to add. We should talk on the phone sometime, that would be a lot easier for me.

http://www.breastfeeding.com/forum/showflat.php?Cat=0&Number=27429&an=0&page=0#Post27429

Cymbalta is reported to reduce pain levels for some people. I haven't found that to be the case for me in the past two months, but then I'm also back in a horrible insomnia cycle and have been more stressed that I normally am. If i get this stuff under control, hopefully the pain will get better also.

One thing that you will find common in nearly all FMS reading: all experts say that there are three keys to controlling it and going into remission. Sleep, diet, exercise. Everything else is just icing on the cake. If you can make lifestyle changes, it really will help.

It's not just any old sleep, diet, exercise plan. You need to do certain types of exercise and they have to be done regularly. If you stop, your pain and fatigue will come back again no matter how many drugs you take.

Eating a generally healthy diet helps. Some specialists believe there is a candida connection and recommend an anti-yeast diet. This is a modified low carb diet. I am skeptical of the candida theories, and the candida treatment didn't do squat for me. However, I did feel better when I was low carbing because taking in too much crap food in the form of simple sugars just is not good for our bodies. But it's really hard to stick to, so I'm off that wagon, too.

You probably already know about the sleep issues, no matter how bad your sleep disorder you need to find a way to get 8-10 hours a night. This is impossible for me to do with a night nursing baby, so I've given up trying to deal with it and I'm right back to my old ways. I will way that I did feel much better when I made myself go to bed at 10 pm every night, but since we moved I'm back to pulling all nighters a few times a week.

There's plenty more to talk about, but hopefully this will help get you started.

Do you have any good books on the topic? I can recommend some excellent titles. Knowledge is power with this stupid sickness.

It really sucks to read all the information and see everybody say over and again that you will be in pain for the rest of your life. I fought this idea for awhile, but have now resigned myself to it. I am seeking ways to reduce and manage my pain, but I know that it's always going to be a monkey on my back. There's some peace in that realization.

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I also get regular massage and chiropractic each week (I alternate treatments). This makes a huge difference for me, so it's well worth the expense. The chiro is mostly covered by our insurance, but I pay OOP for the massage. I stopped for a few months last winter and it was hell.

I do this in lieu of taking pain meds, since I can't get a doc to Rx me pain meds while I'm nursing.

given the different drugs you are taking, I can understand why you'd consider weaning. However I will say that I don't think you should wean if both of you are not ready for it. You can find ways to manage the meds, the pain and the nursing. A lot of it has to do with timing and understanding how the drugs work in your body, how they pass through milk, etc.

Fibromyalgia by Dan Goldenberg, M.D.

Taking Control of Your Fibromyalgia by Rosalie Devonshire. (She is a counselor affiliated with my specialist's office).

Fibromyalgia, and Chronic Myofascial Pain Syndrome ( FMS / MPS ) from Devin Starlanyl. http://www.sover.net/~devstar/

The Trigger Point Therapy Workbook by Davies and Davies.

I read all of them in that order and learned a lot from each. You should be able to get them at the library. You should buy the Trigger Point Workbook and a Theracane. Well worth the investment. I use my Theracane every day it helps immensely with pain / self care.

Rosenberg's wife has fibro. This is a great book for understanding the medical basis of FMS. He and I differ in our opinions on chiropractic, and based on my own experience I think he overstates the case for the effectiveness of anti-depressants in pain management. I think they help, but not to the extent that he says.

I find Ms. Starlanyl to be a bit whiny in parts of her book. It's quite good, though, and I give her a break because she has the disease

Rosalie's book is a great intro to the topic. It is very user-friendly and has lots of illustrations. It has a very positive focus, and it also has a fantastic guide on drugs, supplements and herbs that can help.

The absolute best book I've read on the topic is by an Aryuvedid dude out on the west coast. It's written specifically for massage therapists and I don't think it's available through typical publishing outlets. I don't know the title off hand and haven't seen it since I moved, but it is around here somewhere when I find it I'll add it to the list.

One more thing,

I've gotten a fair amount of relief in the past from applying Arnica Gel regularly to sore areas. The kind that is made with witch hazel rather than alcohol is better. I ran out some time ago so now I'm just using Ben gay type stuff. You can find it at health food type stores and some supplement places.