Need advice!

Hello,

For the last few months, I have been having bilateral upper arm pain, upper thigh pain, groin pain, and now some neck pain. Docs have run all the bloodwork and have just shrug their shoulders, saying they don't know what it is, but that it "could be" fibromyagia, although I don't fit the typical pattern. I have it every day but AM able to sleep at night. The pain is sometimes a stab here and there, sometimes burning, and sometimes just plain old aches. I also have twitching throughout my body. Neuro says twitching is benign and also doesn't know what's going on. She did an extensive neuro exam/bloodwork and said I don't need an EMG. I'm so frustrated!!!! It just won't go away. Saw internist today and she said to just keep exercising, use a heating pad, get massages, etc. because she is baffled too. She told me to stop all supplements except Vit. D3 and CoQ10. I had been taking garlic, olive leaf extract, and grape seed extract, as well as fish oil. She said these could all potentially cause muscle aches, just like some statins do. She said I could see a rheumatologist if I wanted to, but she really didn't know what he/she would do because I've already had all the bloodwork, which has come back NEGATIVE. The only thing which came back a little bit off was the Vitamin D, which was 28 and should be at least 30. She said to up the 1,000 IU to 2,000 IU and see if that helps. I would really appreciate it if people could please respond to this post. In the past, I have posted and lots of people read the post but only one person responded. Any suggestions or ideas you have would be DEEPLY appreciated. Thanks very much for reading this, and hope to hear from you SOON.

Welcome Sharos! I would go see the rheumatologist for sure. They are very good in finding the cause of your symptoms. You don't have to have all the classic symptoms of fibro. Many of us have different symptoms then others. In fibro you will find most all your test will be normal. That is a characteristic of fibro. Many of us do have low vitamin D. Yes, your vitamin D is on the low side as my Dr. Would say. My Dr. Would like mine on the higher side. I forget the level, but I know mine is a lot higher then 30.

Twitching can fall under fibro too. Magnesium really helps with that. I know the Dr's say your level is normal, but believe me it makes a big difference for me.

I would take that offer up if I were you to see a rheumatologist. They order blood work that other Dr's never heard of. Lol make sure you see a board certified rheumatologist that works with fibro patients. It woudn't surprise me if you have fibro. If you do get the diagnoses you will at least know what is going on with you. Learning how to manage it is whole new world. Please let us know how things are going.

I just heard that it takes at least 5 years to get the proper diagnoses for fibro. So many people like you and me search and search for answers only to think we are crazy. So don't give up in finding your right diagnoses, because your symptoms are real.

Post Edited (ak angel) : 2/27/2014 12:44:33 AM (GMT-7)

Hi Everybody,

Thanks so much for all your replies. (And thanks for all the previous ones too that I never received). I AM going to go to a rheumatologist, who hopefully specializes in fibro. I will do the necessary research to find the person. If any of you out there knows of anyone in the Chicago area, please let me know. It's so nice to know there is support. Really helps. Thanks again! Oh, and by the way, someone suggested Epsom Salt baths. Are they ok to do every day? And have any of you had good luck with electric heating pads? I decided to up my vitamin d to 2,000 IU, so we'll see if that helps.

Hi Sharos! I'm so sorry you are having these problems, but they seem very similar to the problems I have with fibro. Fibro will generally not show up on blood work/xrays or anything like that. There is a famous neurologist who is researching that it may in fact be the swelling of nerves in the brain, but testing wise with fibro right now there is nothing that will show it. I would suggest keeping a record of when things hurt. This is tricky though don't let it make you think about the pain more than you should. Jot down when something hurts, weather, time,how bad, and what activities you were doing. With fibro I can do something and have no problems that day, but the next one or the one after I'll feel it! Take that information you've gather to a rhuemy and see what they say. Also note if you feel really tired or have trouble concentrating. I know it is very scary not knowing what is going on, but hang in there. It can take time to get a proper diagnosis and the right doctor. It really sounds like fibro to me, but only a dr will know for sure.

I understand your frustration. One day healthy (1991 for me), the next something is going very wrong. I was originally advised in the opposite order, Internal med. spec, to Rheumatologist, to Neurologist. None of them ever ordered a test that was the correct test, 1991 to 2008. I was what I called "under diagnosed", symptoms, but no "why". It's a long story, which you can find on this site, but as I deteriorated in 2005, finding the "why" was my all consuming passion! It took 3 years, multiple specialists, and a daily journal of every aspect of my life/symptoms that could somehow correlate to each other. The key turned out to be a very intelligent doctor who didn't know what was going on, who put all of my "less than perfection" symptoms into a med palm device (containing the world's medical knowledge). Out popped HCP, a type of porphyria, ( I had never been tested for). Now it all made sense! Everything! The correct test for this disorder is a DNA test, which no one in my state knew anything about, so it was done through a NHI Mt. Sinai study, which I had to investigate and find through the American Porphyria Foundation website. And, I now was armed with the knowledge to take the actions that would give me the best quality of life. I am expressing the disorder acutely, and am one of the unfortunate ones left in chronic pain, but I can now do everything right to keep the attacks as mild and infrequent as possible, avoiding all neurotoxins and drugs on the "do not take" list. My recommendation is to find the "why" to have the best quality of life, which you deserve!

Post Edited (Gods love in action) : 3/3/2014 9:50:12 PM (GMT-7)