Any Advice? Seeing Pain Specialist for Chronic Pain/fibromyalgia Tmrw

my mom has been struggling with alot of the same symptoms for a long time, also. i see her in pain just about everyday, and i'm sorry that you are going through this too. the doctors told her she had fibromyalgia and put her on lyrica and cymbalta (at separate times). the lyrica made her feel drunk all the time, with worse headaches than she was having before. the cymbalta helped her pain, but it made her so numb she didn't care about anything. nothing made her happy, but nothing made her sad either. she eventually took herself off the meds because she hated the way she felt emotionally.
her doctor finally diagnosed her with arnold chiari syndrome... it's a rare birth defect where the base of her skull doesn't close all the way around the spinal column like it should, so the natural flow of cerebral fluid and seratonin is altered. her's is just a small leak, but has the possibility to get worse over time. that's why the cymbalta helped her pain, because the pain was caused by the leakage of seratonin, which cymbalta balances.
she is now taking a handful of vitamins everyday, including B6, B12 (energy), C (balances cortisol level), D, and Zinc. she has been doing better since she started taking all these and walking every morning. i also notice she feels better when the weather is warm and sunny. that was the reason we moved from Virginia to Florida. those gray winter days would come along and you couldn't pull her off the couch to save her life. she was in so much pain she could barely move. now, in the warmer climate where just about every day has at least a little sunshine, she is motivated and even though she still has pain, it's better than bareable.
i don't know if any of this will help you, maybe it will raise some questions for you to ask the doctor tomorrow, maybe it will help just knowing you aren't alone :)
either way... good luck and know that positive thinking is the first step to any kind of healing.

Fibromyalgia is a real disorder but I think it is overly diagnosed because its easier sometimes than actually finding the real issue (like Jessica mentioned below). I personally was misdiagnosed and have heard many stories about others as well - the hard part is that it can take years and much patience (and pain, etc) to find the real cause. ANd if the cause is dietary or behavior or environmental, the doctors never see your whole picture and these dont show up as disorders on a test.

My personal situation was a food sensitivity. I went through a year of all the same symptons you have before my doc finally called it fibro and we tried several low level antidepressants, etc. Cymbalta definitely helped me, but wasnt a "cure" by any means. Finally late one night I stumbled on a website about the side effects of Splenda. Most artificial sweetners have some effects on us, and I was basically overdosing on Splenda. I thought it was a god-send for someone like me who was always trying to lose weight but still wanted to eat and drink decent foods. So I used a LOT of it. It was in the fruit water I was drinking, I put a ton on my oatmeal (I figured it was calorie free, so it didnt matter if I liked it sweeter so I didnt skimp), it was in the salad dressing I ate, etc. If you google splenda side effects you will see that they are very similar to the symptoms of fibro. ANd the really dumb thing was that during the 2 years I thought I had fibro I kept gaining weight, so I kept using more and more products with splenda in an effort to try to stop gaining and lose weight! (I have always hated the after taste of NutraSweet, so Splenda was truly a new opportunity for me to explore sugar substitutes, I thought).

That night was like a miracle light bulb moment for me! :-) I figured I had nothing to lose, so I cut out everything with splenda in it ("sucralose" in the ingredients, and its in almost all "lite" type products now - you really have to read the labels since they dont use the brand name all the time now). It took a month or two to "detox" off it, but then almost all my symptoms got better and started going away. That was 5 years ago, and I defnitely do NOT have fibro now! I assume I never did. I am still working to get rid of the 60 pounds I gained during that time of course (40 to go...), but no more chronic pain, tender areas, etc.

That may not be your problem, of course, and its likely you do have fibro not a food sensitivity or other issue, but its definitely worth exploring. It might be you have both and finding your other issue just relieves some of your symptoms or the severity at least. The hard part is that you just have to experiment, and it can take a few weeks to notice any difference. Red #2 (I think) is a known allergy that wasnt recognized for a long time, but now there are warnings on things, etc. Its amazing the things we put into our body and how it affects us.

You can either cut out everything and go to a bland diet with minimal additives and mostly organic (read labels, the fewer ingredients the better) or a "raw food" type diet to start with and then add back one item at a time waiting a few weeks to notice the difference, or you could just start by evaluating everything you eat for a few days - write down and compare ingredients etc and then start cutting out one thing at a time with a few weeks between, etc.

Or keep a journal, detailing everything you eat and your symptoms that day, and see if you can notice trends. Likely though it wont be a single food but a common ingredient (wheat germ allergies, etc). So it wont be easy... but you are going to be in pain anyway so you dont really have anything to lose.

Anyway... hope that helps. I always thought my dr was too quick to jump to fibro because he just didnt have the time to deal with learning more about me, and this was his way of placating me by giving me a "name" of a disease I could research but which conveniently he couldnt do much about. I am glad I kept looking...

Good luck to you!!!!

They tried to diagnose my husband with Fibromyalgia but he did not respond to any of the traditional treatments. It turned out they were wrong, he had Chiari Malformation. Maybe try some of the treatments for that and see if they help you? Accupuncture worked for chronic pain for my mom but not my husband. Hydrocodone is definitely habit forming, and you can build up a tolerance.

I do not have any direct experience. I did just read a book by a nurse/doctor husband/wife team that explored all the issues around Vitamin B12 deficiency. Fibromyalgia was one of the many issues. If you haven't already done so it would be a relatively easy test. One of those that can't hurt but might help. The authors stress the need to go beyond the basic B12 serum test and have Methyl malonic acid and homocysteine levels checked. In their research they have found that by the time the B12 serum levels show an issue there can already be nerve damage. It seems like most of the time this type of nerve pain would show up first in the hands and legs. If your doctors have only checked serum levels it might be worth asking them for the more extensive test just to rule this out.

Good luck.

HI MJ,
I am sorry your are dealing with this. I encourage you to check out this website, read the testimonials and contact this nutritionist. She helped my daughter over come some digestive issues when medical tests were negative and professionals were dumbfounded. I've written my daughter's testimonial for her site and you can read it there as well. http://www.breathoflifeonline.com/index.htm

Hoping you find answers. Feel free to contact me if you have questions.

Peace & Light,
J.

Have you tried a chiropractor-kinesiologist? There should be several in KC. Kinesiology incorporates the use of muscles to diagnose and treat problems, which can be much more effective than just chiropractic. My doctor is always able to clear out my fibromyalgia symptoms when they become an issue, although I've never had the kinds of problems you describe. I've been seeing this kind of doctor for over 20 years. If you can find a good CPK doc, it can change your life.

I've had similar problems and have found relief with Omega Fish Oil and Flaxseed oil. If I miss taking them for a while I can tell and get more aches and pains again.

I also have found Melatonin helps me get a more restful night of sleep on most occasions. I was going to bed tired and waking up tired.

I do think so much of my problems may be connected nutritionally but haven't found all the answers yet hope this helps.

L.