Living in Chronic Pain and Seeking Advice
For over three years I have been suffering from chronic pain. My body is sensitive to touch and pressure (allodynia) to the point where a wrinkle in the sheet under me or a seam in a shirt can cause me pain. My muscles and joints are always sore. My sleeping has also suffered immensely and my once solid concentration and memory wavers. My body has become both a prison and a torture chamber.
Over the past year and a half I have sought medical help. I have seen dozens of specialists and been tested for so many illnesses I have lost count. After all of this my doctors have given me a diagnosis that annoys me greatly - that of Fibromyalgia, which is a diagnosis of exclusion. A diagnosis of Fibromyalgia is simply another way to say they have no idea what is going on with me or how to solve it, which their incessant tests and ineffective treatments simply reinforce.
At this point I don't know what to do with myself and my frustration is building to a dangerous point. My health is so bad I have been unable to hold a job for long without going out on medical leave again and this only adds to the stress I am under. I am reaching out to the DU community to seek advice and hear if anyone in our community has received a similar diagnosis to learn how they handled it.
Thanks for your time and help.
= new reply since forum marked as read
I know a few people with fibromyalgia and it is a very difficult condition.
My son was diagnosed with chronic fatigue syndrome several years ago while he was in college. I won't go into detail about the number of doctors, tests, and the cost. It's taken time but he's learned to live with his condition.
Two thoughts: Find support and information online. He and I researched the heck out of it. Knowledge is a tool. Second, seek out a doctor or doctors who accept fibromyalgia as a diagnosis. We wasted years and thousands of dollars on doctors who refused to see my son's myriad symptoms as all pointing to one thing. They insisted he had to have several different problems (that all came on at once, how odd 
) and refused to even consider anything else. We saw every specialist under the sun until we sought out a chronic fatigue specialist.
Today my son is 27, gainfully employed and lives a happy life. He knows his limits but with the help of an internist and an allergist, both of whom respect the CF diagnosis, he's doing great.
It took time but it did happen. I hope you can find the same. 
She got the diagnosis from the Mayo clinic so I don't think its some kind of bullshit diagnosis... that said she's found great relief with medical marijuana, a vegan diet, a strict adherence to getting enough rest, and meditation.
She fought the diagnosis for a long time (she's in college and wants to party and eat hamburgers and junk food etc) but the overwhelming pain finally forced her to get tough. 2 years later and she's in a much better place pain wise. As you know its not going to ever go away but she has finally got her life back under control. She says its a disease of inflammation so the key for her was tackling that systemic inflammation with that combo of mj, diet, stress reduction, and adequate time daily for her body to rest.
I am so sorry you're suffering. ...
Meditation - learning to focus on and control your breath will help in calming your nervous system; it takes practice but after 30 days you should notice a difference. It will also help with how you PERCEIVE your pain allowing you to deal with it better mentally.
Diet - pay attention to what you're eating and then try to cut out the processed foods; eat as fresh as possible. Gluten may be an issue as others have pointed out, wouldn't hurt to give that up just to see what happens.
Exercise - gentle restorative stretching may be a good option. It's a type of yoga and is effective in relieving stiffness/pain.
I am sorry you are in so much pain that's it's affecting your daily living and your thinking. My mother has fibromyalgia and these things have worked for her. She takes ibuprofen on a bad day but nothing else. We don't know the mechanism of action of antidepressants recommended to relieve this type of pain and taking them long-term may not be wise knowing this. I am not telling you to not take pharmaceuticals; but if you haven't tried these other things, worth a shot.
Good luck and I hope you find something that relieves your pain so you can regain a sense of well-being and enjoy life again.
next time you go to the doctor. I always go with my mom and have found two heads are always better than one. (I always think of questions she doesn't and I also corroborate her and pressure medical staff for her as necessary.)
Good luck to you! 
