Fibro in Los Angeles

[Bananatree]

Hello everyone!

I have a lot of symptoms of fibro. A dentist suggested I may have fibro due to my persistent TMJ disorder and hellish shoulder/neck/arm pain. Sometimes I get very bad back pain and debilitating fatigue. This has been going on for years. I'm 35 now, but I started with very bad knee pain and fatigue flare-ups when I was in my mid 20's. The knee pain is gone, but the TMJ and shoulder pain is very bad.

My GP is a rheumy and she has ordered a million tests to see what's going on. No lupus or RA, Chest x-rays and CT scans all clear, blood work all normal except for low vit. D (which I've corrected). My GP is a very experienced doctor, but I have a feeling she is very old school and may not be entirely up on fibromyalgia. She seemed to try a few pressure points, which didn't result in any special pain. Except during a flare up, I notice they do cause pain (when I press on some of them... they are tender but not excruciating).

Is there anyone on this board who knows of a good doctor in Los Angeles who may be able to help me get (or rule out) a fibro diagnosis?

 

[1sweed]

Bananatree,
Welcome to the forum. Hopefully another member can help you with finding a different doctor. It sounds like your doctor has been very good at testing you for everything that might be causing your added pain and tenderness problems. Since she is a rheumy, have you ask her about fibro, or is she unwilling to take suggestions? Some doctors get offended if a patient mentions something other than their diagnosis.

In the mean time please read the posts in the pain topic and alternative methods section and hopefully you will find some ideas and new coping skills that will work for you. Be sure to read the old and new posts. I wish you lots of good luck in finding the right stuff that will ease your pain and make life fun again. See you around the forum.

 

[Bananatree]

Thanks 1sweed!

My rheumy suggested fibro to me but then brushed it off saying "there's nothing you can do for that anyway." I see her point, I guess. Her job is to test me for observable pathologies. If there aren't any, we could call what I've got "random pain/fatigue" or "fibromyalgia." I suppose I don't need the "fibromyalgia" diagnosis anyway as long as I know there isn't something else that's causing my symptoms.

It seems from poking around here that most of you don't really like the regular prescribed medications like Lyrica, etc. I've been going to a craniosacral therapist and an acupuncturist. The craniosacral therapy seems to work the best for me to help ease pain.

My therapist tells me that fibromyalgia isn't a "disease" per se, but it's really a cluster of symptoms that have different causes. I wish I knew the cause of mine! My acupuncturist has told me I need to get on an anti-inflammatory diet and cut out everything bad (sugar, alcohol, caffeine, dairy, etc.)

 

[1sweed]

I see your doctors point in a way, I guess as long as she is looking out for you in some fashion. Since it has been mentioned though, you can read and learn coping skills for now. It is not that I dislike the medications for fibro, only that I am allergic to most of them. All medications have side effects, some worse than others. Some medications need to be backed off of slowly, while others can be stopped at the first sign of a bad reaction or other problem that makes taking the drug hard to deal with. You have to try them for yourself to see what works for you. You might be able to take a drug that I can not take and be almost pain free. Weight your options and try.

I don't know if what your therapist says about fibro is true or not. But fibro does in fact produce many different unrelated symptoms that can be very hard to live and deal with. Anything is possible, but with a diagnosis I know what I am dealing with and have learned to accept it for now.
It would be nice to have the magic key to this so one could unlock the door and escape from it, but I don't see that happening any time soon.

I wish you the best and may be you will have a firm diagnosis sometime in the future. I am glad you are here and keep on posting as much as you want too.