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Doctors against Fibromyalgia?
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Michelle83716 posted:
I need to run this by everyone here. I can't believe still that I was told this. I've had Fibromyalgia for 10 years now and have been seeing a Rheumy for it and for Rheumatoid Arthritis and Sjogren's Syndrome. My Rheumy is very, very hard to get into and their aren't too many of them here in the Boise/Meridian, Idaho area as it is. Not to mention I live outside of Boise and sometimes it is hard for me to get transportation into town to see him.

My Rheumy has been out of the country and the earliest appointment I can get with him is July 30th! So I called my primary doctor and asked if he could recommend/refer me to someone else so I can get in before then and one that is a little closer to my work for convenience. This is the part I can't believe! My Primary Doc, who I love, told me I should not change care because there are so few of them and alot of them are not taking people with Fibromyalgia and send them to pain clinics instead!!! I was shocked! Since when has Fibromyalgia become a taboo? Now people believe but treat us like lepers? I've been to a pain clinic for my migraines/back pain & arthritis and was told there they only treat the back pain so what good would it be for me to go there again? It's made me feel like the Doctor Community in Boise is shoving Fibromyalgia patients off on anyone they could and, in a way, treating anyone who has been diagnosed with Fibro like drug seekers! I just couldn't and still can't believe this! Is this happening across the United States?
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Anjl26 responded:
Unfortunately Michelle, this is not anything new. Many Rheumys and Neuros will not touch a FM patient. This holds true in all parts of the U.S.

Try looking on the Natl FM Association website to see if there are some other doctors listed for your area. (They have a listing by state of those they recongize for treating FM.)

Or you can try calling all the Rheumys in the area you'd prefer and ask right up front if they take FM patients.
Being happy doesn't mean everything's perfect. It means you decide to see beyond the imperfections. hugs Sharon
 
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fibroinsd responded:
Just when you think Doctors are starting to recognize this...this happens...I thought things were getting better. So sorry you had to deal with this.

I might go to www.fmaware.org and see if they list anyone else in your area. Also, I might just try calling Rhumatologists and ask if they treat FM.

I hope you will also go to the tips section of this page and look for the toolbox...maybe you can find some things to help until that one doctor gets back.

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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Socialwrkr responded:
Yep, happens all too often.

Part of the issue right now is that fibro has been pretty well determined to be a neurological condition, so Rheumy's don't want to see us. But, Neuro's aren't ready to take us on either, I was just on the American Academy of Neurological page and fibro is not listed as a disorder they treat.

I'm glad your primary doc told you the truth, that certainly helps. I agree with checking into FMAware.org, but the sad truth is, you may not get an appointment any sooner. Most the docs who see fibro patients have a backlog.

Can your primary help with the current situation until you can see your rheumy? I gave up on seeing a rheumy here in Ohio and all of my care is through my primary doctor who calls Cleveland Clinic or Ohio State School of Medicine for help as needed.

Best of luck, don't let this get to you, it's more politics than anything else!
Be Gentle on Yourself!!! ~~Aimee
 
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An_198924 responded:
Yep, I can see them doing that. Fibro to them is pretty much "pain" of an undetermined nature to them. Can't run a blood test to see why your in pain. Therefore, go to pain clinic.
 
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dollbug responded:
Hello Michelle....and welcome.....sorry that you are having problems with the doctors...I guess there are too many people meeting the wrath of the dragon....and the doctors do not truly know how to treat us....most of them just want to treat women for depression....(sorry Dr. P) ....but I hear this quite a lot...it seems like women have a lot of issues with depression...

If I were you....I would call around and try to find another doctor who treats FM....are you near a medical school/hospital by chance? This is a good place to start, if there is one close...and be sure and ask them if there are doctors who treat FM...

I do know that my doctor treated me for depression and thought that was the only health issue I had...and after 6 hand surgeries, cervical surgery, parathyroid surgery, elbow surgery...he finally changed his mind about me....and now he treats me quite differently....(he actually decided this when he assured me that I did not have parathyroid problems)....I had to get "ugly" and demand that he prove to me that I did not have parathyroid problems....and again he insisted that was not the problem....but had the scan scheduled anyway...

You can read more about this under my personal exchange...Pain and Vitamin D and Wrath of the Dragon...

Anyway....we FMers...must keep on keeping on ...and take charge of our health issues....

I sure hope that you will be able to find a doctor....if you do...please ask your doctor to check your Vitamin D level....which is so very important....a simple blood test...but you MUST ASK for the test to be run....as it is not one of the normal things that check for....

I have learned how to "control my FM pain by taking Vitamins and Supplements...so if all else fails....try them....I take magnesium and malate combination supplement, Omegas, Vitamin D, Calcium and Super B Complex....plus others...since I have multiple health issues...

What helps one may or may not help another....but only you will know....but it does take a trial and error process...and you must allow at least 6=8 weeks before you will "feel" a difference....sorry...no quick fixes...

I hope this helps...take care and good luck..


MiMi
 
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cattlebarroness09 responded:
Yes, a lot of doctors don't understand or take the time to learn about firbo which makes it so hard for us to find one that beleives fibro is real and knows how to treat it. I went thru a lot of doctors before I found one that was willing to learn about fibro with me so as I found new research I would take it to him on my visit.
My pcp beleives fibro is real but all he wants to do is give me presciptions nad when I tell him I already tried that and that I always get side effects, he tells me I am his problem patient, sweet huh? Oh well life does go on.
Hope you find one closer to you and I would suggest calling before making an appt. to be sure he/she really does treat fibro.
Shar in Tx.
 
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cattluvver replied to Anjl26's response:
I am a member and I haven't been on the discussion forum since it's changed, but I'm glad to be back. I just had to jump in here because I thought I was imagining the way a Rheumy treated me several years ago, but it wasn't. I went to him with all my info an symptoms, etc., etc., and my general doctor and I knew I had fibro but I need a specialist. This doctor listened and then said, "i can suggest your doctor give your Lyrica (we had been trying to get it for four months!!), but there isn't anything I can do for you". I was soooo upset.

Fortunately, I soon found a fantastic neurologist who treats fibro (and my disc problem) and I feel fortunate. I'm saddened to read that some doctors won't "touch a FM patient" How sad..
 
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annette030 responded:
Why not see the rheumy for your arthritis and Sjogren's Syndrome and let your pcp treat your FMS?

Many rheumys like other specialists are going into sub-specialties and may treat only arthritis or other autoimmune diseases.

I have had my pcps treat my FMS for all but about a year of my experience with FMS (a total of about 15 years). They have done fine.

If you go to a pain clinic and they treat your back pain with oral medication, it may well also treat your FMS pain successfully, you won't know unless you try it. I have found over the years that the treatments for all kinds of chronic pain are very similar or even the same.

Take care, Annette
 
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Mark Pellegrino, MD responded:
Hi Michelle and others,

Thought I'd chime in here. I don't think doctors are against fibromyalgia. Thanks to ongoing research and education over the years, the medical community has widely accepted "fibromyalgia" as a valid medical condition, especially the primary care doctors. The number one group diagnosing and treating FM today is the PCP's. The "controversy" about whether FM exists has been diffused, I believe, and that has enabled millions of people to be helped.

There is much variability on how much individual doctors embrace the treatment of FM. In my experience, the vast majority of doctors want to help the FM patient and will start the treatment process, the first line treatment. As you know, not all with FM respond to initial treatments and the PCP may feel comfortable moving on to additional treatments, or may feel it's best to refer to a fibro-friendly specialist.

I know you can get frustrated by what you consider "fibro-friendly." If the specialist does not "manage" FM, then hopefully the visit will help rule out other causes of pain and yield some helpful treatment suggestions for the PCP. It's not unusual for a specialist to recommend referral to pain management for specialized management of FM/chronic pain. No doctor has magical treatments or miracle cures for FM and some prefer not to see a lot of patients with this condition. Just like we with FM have to make responsible choices on what we do to optimize our function, so do the doctors. Rather than getting angry at doctors who have made practice choices they feel best helps their patients and fits their practice style, be positive and hopeful tthat you will ultimately find your "team."

To me, there's no sense getting all flared up over a doctor who doesn't think he/she can help your FM, for whatever reason. We still have to change our lifestyle and find our balance to reach our best level and best quality of life. The person who is most important in that journey is you. Find the people who will be positive, helpful travelling companions and bring them along!

Dr. P
 
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alispazz replied to Mark Pellegrino, MD's response:
Michelle, and Doc..

Michelle, I am one of the lucky ones, My PCP sent me to a neuro...right off the bat..and thank the powers that be she believes in FM...I have had what I feel is good care, with lots of understanding of the syndrome .

Having said that, I don't mean to counter you Doc, but I have run into Dr.'s within the last year that when you, tell them you have FMS, they immediately become patronizing Jackasses, who say well you know that illness doesn't really exist its all in your head.

This happened not once but 3 times, one who was the on call when I was admitted to the hospital went as far as to tell the nurses, that I really did not need all the meds I was on and refused to allow them to give me my meds...I had DH bring mine from home and basically told him to go screw himself, that I had not worked with my neuro...for three years to find a good combination to help me to have him take it away.

Type A personality came in handy,

Oh and by the way the drugs he thought I needed were the most expensive drugs on the market...go figure. and wwe had been theere done that and they had not helped!!!!!!!!!!!!!

MIchelle, you have to find someone who believes in you and FMS or you will always be frustrated,

I agree with Sharon, MiMi, Aimee and all the others on that point .

All I can do is hope for the best for you, since I know that that part of the country is pretty sparse and finding a Dr. can be a pain.

Hugs

Ali
Follow your heart and not your dreams..the dreams are from your mind and can lead you astray, the heart never can..SMOLOL Hugs Ali
 
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debw216 responded:
Hi Michelle... I also wanted to add that if you have health insurance, then call your insurance carrier, and they will have a list of Rheumy's in the area that excepts your insurance.

Good Luck!
D...
 
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Michelle83716 replied to dollbug's response:
Thanks for the reply. I was diagnosed with Fibro 10 years ago, then RA about 5 years ago and 3 years ago Sjogren's Syndrome. They tested my Vitamin D right off the bat and it was fine until about a year ago. Now I take 1000 iu's a day and it is with in the range it should be. Thanks for the tips, I appreciate them.
 
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Michelle83716 responded:
Thank you to everyone for your support and suggestions. Just wanted to add that I have requested my PCP to handle my Fibro but he felt my symptoms, along with my other arthritis issues, were too much for him and wants me to see a Rheumy. I am not leaving the one I have since it seems he does believe in Fibro, I just need to a little more patience in getting in. The whole thing that started this was the fact that my meds ran out and my Rheumy's office would not refill because they/he wanted me to have blood work done and he was out of town. This on top of a flare put me over the edge so to speak. Fortunately, my PCP jumped in and gave me enough meds until I can get into my Rheumy. I am on only 2 medications for all my arthritis and I have found ways to deal with my Fibro flares. This flare was the worst I have ever had in 10 years! So I really, really need to see my Doc.

Maybe it's the fact that I have been seeing this doctor for about 6 years that I wasn't aware of the change in attitude. I do work for a Family Practice Doctor and have been aware it is hard to get anyone with any kind of Arthritis in to any Rheumatologist here in Boise. Once again thank you for all the responses and suggestions. It really helps to come here so I can think straight and here that I am not alone with this diagnosis, even though it feels like it a lot of the time, lol!
 
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Lish2007 replied to Michelle83716's response:
Thanks everyone for this information- i was completly in the dark about all this. I have a fairly good Rhuemy now, but if i were to need or want a second opinion it looks like it could be tough. Well that doesn't surprise me, for what this world is coming to anymore.

Well, hope everyone is doing good.

Soft Hugs!! Alicia


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