Doctor Referral for Fibromyalgia/Chronic Fatigue

[Nancy1]

I am looking for a doctor in the San Diego/Orange County area who is experienced and supportive of fibromyalgia. My primary says it is a "designer" diagnosis. I have Medicare

 

[sunkacola]

Hi @Nancy1 and welcome to the forum.
Hopefully someone here can recommend a doctor to you, but I don't know if we have anyone from your area.

One thing you can try is doing an online search for doctors who treat fibromyalgia in your area, and then calling those offices to see if they take medicare.
I just typed in "fibromyalgia doctor San Diego" and up came many, many names and places where they treat fibro.

 

[Nancy1]

Thank you. Of course I have also googled this. My primary won’t help. I already went to one rheumatologist before I knew to use the word fibromyalgia but gave him all the symptoms I now know lead to fibromyalgia but he only ordered a bone density test. I can’t go through many many names. I guess I need to keep looking for a group or forum where someone from my area can recommend someone who “gets it”. I am feeling awful and really need help. If there is anyone who reads this who can help, let me know. I guess I need someone who does not require a referral as my primary won’t help. I learned about fibromyalgia from a therapist I see in desperation. If you have this dreaded condition, you know how debilitating it can be.

 

[sunkacola]

Thank you. Of course I have also googled this. My primary won’t help. I already went to one rheumatologist before I knew to use the word fibromyalgia but gave him all the symptoms I now know lead to fibromyalgia but he only ordered a bone density test. I can’t go through many many names. I guess I need to keep looking for a group or forum where someone from my area can recommend someone who “gets it”. I am feeling awful and really need help. If there is anyone who reads this who can help, let me know. I guess I need someone who does not require a referral as my primary won’t help. I learned about fibromyalgia from a therapist I see in desperation. If you have this dreaded condition, you know how debilitating it can be.

I certainly know how debilitating it is, having had fibro for many years now. And I fully sympathize with your having a hard time going through many names! But you need to start somewhere. Waiting until someone can hand you just the right name might mean a very long wait.

Just call one place per day. You never know....you might find a good place on your first or second call. I certainly wouldn't be able to face calling 15 places in one day, myself, but I can make one phone call a day to advocate for myself. Unfortunately, we with fibromyalgia have to learn to advocate for ourselves.

If you start out with places that advertise that they treat fibromyalgia, then all you have to do when you call is ask if they take medicare.

Medicare will definitely need a referral in order to pay for you to see any specialist.

But if the doctor is a GP or internist or something other than a specialist, and they treat fibromyalgia, then you could change your primary doctor to that one and Medicare would cover it. T hat is probably the best course of action for you.

These are questions you will have to ask any doctor's office anyway before making an appointment, because even if someone tells you they see a great doctor in your area, you will still have to find out if you can see them on medicare, because not all doctors take it.

You will probably want to change your primary doctor in any case, if that person is not supportive to you and you don't feel good about them. Medicare will allow you to change your primary doctor, no problem.

I also suggest that you not jump to the conclusion that you have fibromyalgia if you have not yet received that diagnosis. The important thing is to get tested for all of the many different things which might be causing your symptoms. There are a lot of different things, and unless you rule them out you really don't know if maybe you have something else.....something much easier to treat than fibro! So it's worthwhile to do that.

And just one little word to the wise.......often doctors, even if they treat fibromyalgia, don't respond well if a patient comes in and tries to tell the doctor what they think they have. Best, many of us have found, just to list all of your symptoms, and let the doctor make the conclusions after testing you.

Let us know if there's anything we can do to help you in the meantime while you search for the right doctor.

 

[Day at a time]

Nancy,
As a retired primary care physician myself, your primary doctor can certainly get you started on medications to try, based on your predominant symptoms . Getting a rheumatologist that specializes is tough. I’ve seen two myself and they had no more to offer, as I had been treating myself with self-prescribed medications for 15 years. But I thought I would see if there may be anything else I can do. One did suggest daily Tai Chi and water therapy, which both help.

Educate yourself about the disorder. Knowledge clearly reduces the anxiety that accompanies all the different aches and pains that make you think you’re going crazy, the fatigue, etc.

My next step is pain management because I think that for me, if I can reduce the pain in a few areas with trigger point injections or Botox, I may be able to increase my activity.
Daily mild exercise is so important to improve energy levels, but some days you can still feel like a 500 lb rock is sitting on you.

Btw if you have traditional Medicare, no referral is necessary.

Bottom line….see a rheumatologist to get a diagnosis and treatment or get a different primary doctor to do so. Either one can refer for whatever you need i.e. pain management,cognitive behavioral therapy,physical therapy,medication.
Also know that fibromyalgia is very real, although back in the eighties when I trained, we were taught it was basically psychosomatic!
Currently fibromyalgia diagnosis can be used for disability. Times have changed.
What is a designer diagnosis?

 

[sunkacola]

What is a designer diagnosis?

I think what that doctor probably meant was that it is not real.
Whether or not it requires a referral to see a specialist depends on what kind of Medicare a person has. It is true (thanks for pointing that out!) that with Traditional Medicare you don't need a referral to see a specialist, but not all specialists take Medicare, so it is important to find that out ahead of time.

 

[Nancy1]

Thank you so much for your response. You are the only person who helped me without trying to put me down.