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Posted By : Sunny13 - 3/17/2017 11:57 AM
My fibro is really acting up and I don't know who to turn to for help.

I had seen a rheumatologist 2 years ago when trying to figure out a diagnosis. He wanted to put me on meds for inflammation even though all of the tests showed no inflammation whatsoever. So, I didn't go back.

Then I saw a physiatrist who diagnosed it as fibromyalgia-like syndrome/chronic nerve pain. That doctor then retired and closed my case, so her partners won't take me on as a patient.

I don't even know how to begin my search for a doctor. What kind of doc do i want to see? I looked on the Fibro 101 for doctors in Wisconsin, but none of them are anywhere near where I live.

Right now my pain doc is prescribing my lyrica, but he doesn't specialize in fibromyalgia and I want help with managing this.

I went to my primary care doc and asked for help in finding a doctor, but she ended up only giving me the name of the two docs I had already seen.

So what type of doctor do you all see for fibro? There is one fibro specialist in my area (which includes a teaching hospital and other large hospitals) and apparently he mostly does cases for disability.


Sunny13
There's always HOPE.

Many challenges & lot to be thankful for.

Spina Bifida dx age 20; chronic back pain (tethered cord release, CSF leak), spinal cord re-tethered
neurogenic bladder (augment, urostomy, sling)
neurogenic bowel (colostomy)
chronic migraine, TMD
bulging discs etc. C3-C6
bipolar 2, anxiety
fibromyalgia
chronic nausea
total hysterectomy/surgical menopause @37

& more.

I'll be ok.

Posted By : Sherrine - 3/18/2017 6:48 AM
Sunny, most of us use a rheumatologist or our primary care doctor. I have a rheumy and an Internist and both are board certified and both know that fibro is a true illness. Your rheumy probably doesn't believe fibro is an illness. There are some doctor out there in the Dark Ages when it comes to fibro.

See if there is a fibromyalgia support group in your area. If so, contact them and see who these people use for their fibro doctor. You can call the teaching hospital in your area and get referrals. The one fibro specialist should take anyone! You may have heard a rumor that he only takes people for disability. Most people with fibro aren't disabled so he is practice would be very small. Also, most of us do not have a fibro specialist to begin with!

You can ask friends you know who have arthritis. They would know a good rheumatologist. Make sure they are board certified and, if so, call and see if they treat patients with fibromyalgia before you ever make an appointment. (You could contact an arthritis support group in your area too.)

I found my rheumy by talking to a friend with rheumatoid arthritis. She said she loved her rheumy. But that wasn't good enough for me. The next time I had my hair cut I asked my hairdresser if she had heard of a good rheumatologist. (I find hairdressers know a lot because their clients talk about everything to them. 😊). She said she had a client that really liked her rheumy so she stopped cutting my hair and called that client to get the name of the doctor. By golly, it was the doctor my friend suggested! So, when I got home I got online to healthgrades.com and also vitals.com and checked out this doctor. You can see what schools they went to, if there are any actions against them, and also patient reviews. This rheumy had excellent reviews so I set up an appointment and the rest is history.

You just have to do a little legwork. Obviously the Lyrica isn't helping you so I don't know why your pain doctor continues to prescribe it. You also can try over the counter things that help quite a few members like vitamin D3 and magnesium malate. I take those plus I also take ibuprofen with food and Tylenol. I do have some inflammation due to other illnesses I have. Fibro isn't an inflammatory illness as you have found out. My rheumy prescribes a muscle relaxer called Robaxin that has made a significant difference in my pain. I only need a little to take the edge off the pain and this way I don't get side effects from it. I'm totally alert, awake can drive without worry, etc. There are many things you can try to find what works best for you. What works for one doesn't necessarily work for another. It's a trial and error type thing so keep looking and trying things. Meanwhile start walking as a gentle form of exercise and pace yourself when doing things. All of this really does help.

Do let us know what you find out and how you are doing because we do care about you. I'm so glad you are now taking acting and not just "settling" . You are on your way to feeling better!

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 3/18/2017 6:56:04 AM (GMT-6)


Posted By : Sunny13 - 3/18/2017 5:58 PM
Thanks Sherrine.

There is a fibro support group here, just never got to going. I'm very socially anxious. It would be really helpful for me to talk to them.

about the Lyrica. It was working pretty well, but not so much anymore. Maybe increasing the dose would help, or else trying a new medication...when my pain doc took on prescribing it, it was just a matter of taking over the prescription, not managing the illness. I see him for chronic back and neck pain.

I do take D3, but can't take magnesium (bad reaction) and due to other meds I can't take NSAIDS. Gotta see a doc who knows fibro so we can try other meds.


Thanks again for your message!


Sunny13
There's always HOPE.

Many challenges & lot to be thankful for.

Spina Bifida dx age 20; chronic back pain (tethered cord release, CSF leak), spinal cord re-tethered
neurogenic bladder (augment, urostomy, sling)
neurogenic bowel (colostomy)
chronic migraine, TMD
bulging discs etc. C3-C6
bipolar 2, anxiety
fibromyalgia
chronic nausea
total hysterectomy/surgical menopause @37

& more.

I'll be ok.

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