I have helped my daughter get a lot of improvement using supplements, diet changes, and lifestyle changes. We had the same experience that you did with the doctor. After about ten doctors and sixteen years of trying conventional medicine, we decided that medicine has not reached the point that they can help my daughter. They were focused mostly on treating pain, and pain is only one of about a hundred symptoms of Fibro and CFS/ME. Treating pain didn't really help much with the pain, and caused side effects that made the overall situation worse. There was weight gain, terrible mood symptoms, and lyrica caused x-rated slasher dreams and horribly depressed/angry mood (other friends have agreed they also had ths side effect -- very strange and not appropriate to give a child).
I would not say that's true for everyone -- that medicine and doctors can't help fibro. In particular, I believe that many adults probably have comorbid problems, such as joint problems or back problems, and addressing those medically is likely to reduce the pain signals. Since any pain signals will be amplified by the fibro, reducing the source of these pain signals is key. But, doctors are the first to admit they don't have a cure for fibro, and they have to take a "multi-modal" approach (meaning medicine won't do the job alone, if at all).
We found a couple of gene SNPs, using 23andMe, that were causing some problems for my child. She has two MTHFR heterozygous mutations, meaning she should avoid folic acid and supplement with L-5-MTHF (a bioavailable form of one of the B vitamins), and a mutation which means that she does not efficiently convert beta-carotene to vitamin A, so we need to supplement with extra vit A (more than normally recommended). We also use all the most frequently recommended supplements for fibro, and over the years, have found more effective forms. I put a comment under alternative treatments forum, listing what we use.
Hear are some of the biggies --
Magnesium (we use Natural Calm),
High doses of vitamin D3 (5,000-10,000 iu per day, and up to 50,000 iu daily for up to a week if someone around us is sick),
malic acid,
Twinlab Stress B vitamin,
L-5-MTHF,
fish or krill oil
Co-Q10
Wellness Formula when someone around us is sick
nasal rinses.
In addition, she has changed her diet to have more fruits, beans, rice and legumes, and avoid gluten for periods of time, which seems to reduce her fatigue, brain fog and pain. I have a friend whose neck pain vanished when she quit gluten, and another friend that had the same experience after hearing her story. My daughter also eats a lot of spices, mexican food, indian food, turmeric/milk drinks, cilantro, ginger. Spices seem to help her symtpoms. And, also a variety of adaptogens (beneficial herbs), ashwaganda, ginseng, etc..
There are alternatives, if the doctor is not working out for you. Doctors are ONE resource, and often the beginning of the journey, but there are many other paths to go down, like alternative treatments such as accupuncture, supplements, diet changes, lifestyle changes, stress reduction, supplements. It took us many years to get here, but we are seeing measurable improvements in managing symptoms and raising the threshold for flares. It can be done!
Our doctor also tried to refer us -- the orthopedic to the neurologist to the rhematologist, who tried to refer back to a neurologist, who referred to a pain clinic, that only seemed to care about pain and not he hundred other symptoms we were dealing with. I have come to understand that there is really no such thing as a "fibromyalgia specialist". Doctors know that they may not be able to produce significant improvement in this condition, and so they try to refer patients such as my daughter to someone else.
.