Question about Chronic Myofacial Pain/Fibro - Fibromyalgia Message Board

ARANGER · 05-28-2005, 06:41 AM

I have a question for all you that are diagnosed with one of the above. I posted a long time ago about possibly having Fibromyalgia. Well the first diagnosis that was confirmed by two doctors was widespread chronic myofacial pain. The Doctor also said he througt I had Fibromyalgia as I had 14 out of the 18 ACR points??

Anyway, he said it was a diagnosis of exculsion. Well it turned out that I had to have another surgery on my back so the Fibro wasn't followed up much. I always seem to take longer to heal and it seems that the original symptoms (stiff mornings, fatigue, pain, etc.) is still getting worse even away from my back. Like my neck, shoulders, legs, and joints

Well I went to see an internal medicine doctor, partly due to an infection in spine. When I mentioned to her that I possibly had Fibromyalgia she said, "Oh thats just a wastebasket diagnosis." I was shocked as I have a book on it and know some people that are disabled due to it. I've never went back as that ticked me off pretty bad.

My question is, do you generally see a rhuematologist for your CMP or FM. The doctor that diagnosed me was a physiatrist (Not Physciatrist) that specializes in pain managment and rehabilitation. So should I ask for a referral or go back to him. He was really nice but said my surgery would have to be complete first before the official diagnosis.

Who diagnosed you and who treats you. I've read the fibro book and have 90% of the symptoms so I'm pretty sure I have it, just not sure who to see. Thanks in advance for your replies/help.

rosebuddy · 05-28-2005, 02:41 PM

Hi. I was diagnosed by my PCP, his wife a rheumy and then a neurologist.

My initial flare was horrendous especially with the chronic myofascial pain. I also had weakness like the flu and huge knots on my shoulders and active and latent trp's all over my arms, hand, back, and shoulders that were causing nerve pain. Also achey in the mornings and burning on my skin like i had skid on the sidewalk. Very painful. I thought I was going to flip out. I actually kind of did; I became depressed. I didn't handle it very gracefully. I still get stressed easily and am hypersensitive to noise and too much activity. I am grateful that I don't have any personal problems and my health is good right now. The only pain I am having at present patches of burning and weakness on the stairs and I just can't go go go all day or I become overwhelmed.

I am sorry that you are having difficulty with finding a doctor who will treat your FMS and CMP. There are good ones out there. My pain mgmt doctor change my life. I was bed ridden this time last year. Don't give up until you find a good one.

I hope I helped. There are very knowledgeable and nice people on this board that will help you out and old posts would also be helpful to you.

Also, I see a rheumatolgist about once every 3 months for fms. I see a pain management doctor for CMP where I received excellent care. I had injections into muscles with active trigger points and saw the doctor once a week. I also had physical therapy there for 8 weeks and she orders my meds: Neurontin and Percocet and Flexeril. I am doing very well now. I see my chiropractor when needed for myofascial release in my shoulders and back and adjustment.

Donna

bluelakelady · 05-28-2005, 09:58 PM

first doc was a rheumy. blew him off after a year on a bizillion pills. now i have a very cool gp. she and i work together helping my body. we arrive with ideas and toss them about. a good doctor sees you as an equal. someone they can learn from as well as teach. a lousy doctor has a throne and a long robe and crown. just ask that doc and they will agree he/she does look like god. i went thru 17 doctors before i found my dear laura. i heard it all, tried it all, and then told them all where to place their ideas. i have met a number of doctors who would rather look like a dumb horses fanny than admit they don't know anything to tell you. makes no sense. ego is such a waste of time, everyones.
doctors are like bugs. some are very good for the garden and others are pests.
giggle,
peace,
bluelakelady

ARANGER · 05-28-2005, 10:31 PM

Thanks for the replies. I'm glad you found a Dr you can trust and like. I used to have great Family Practice Dr, but he moved. My pain management Dr is pretty cool, I just wasn't sure if he did the Fibro DX or if he needed to send me to a Rheumy.

The internal medicine doctor really ticked me off when whe called FM "A wastebasket diagnosis." I still can't believe she said that. Oh well, hope it never happens to her. She wouldn't know what to do with herself.

Again, thanks for the replies. I think I will start with my pain management Dr and see how it goes from there.

Wish you all the best

hangin · 05-30-2005, 11:55 AM

Hey Wilson,

Have you thought about going to a myofascial release therapist. They can do wonders. My brother had it so bad he was bedridden, went to the MFR Therapist and after a few times he was out of bed and felt so much better. It is different and hurts a little as they do it but he said the pay off is worth it. A little pain is nothing when it comes to chronic pain.

If you want more info on this let me know...I will be happy to share any info I have to help you.

I do know how hard it is to find a doc who understands. I think so many of us on this board can relate, you are not alone in this respect. You have to just keep looking.. After 8 years of searching I was diagnosed by a GP and then he had a BREAK DOWN and there I was again looking for a doc. It took me months of going to doctors who treated me like I was crazy, a drug seeker or a hypochondriac....Finally I found a Pain Managment Doctor who listened to me and was very compassionate. It paid off after all the work and heartache. This doc does everything for me, my meds, physical therapy referrals, and since I have 2 herniated discs in my neck he is qualified to give me shots. He is awesome. There are docs out there who will listen and take action. Is there a FM support group where you live that you can contact. Sometimes hosptials and/or colleges will hold meetings so you can go and vent and be with people who are going through the same thing you are. Maybe if you contact the Fibro Association which you can find on the internet they might be able to steer you towards these groups, worth a try. There ususally is a phone number if you need it, if you want to contact them and have trouble let me know, I believe I have their number.

Eventually you will find the right doc.

Hope you are feeling better. Hang in there, I know it is hard but there is always someone who will help you. I tried to look at it as a journey and the person was waiting for me to walk into their office. Corny I know, but it helped me. It might seem like a long road and sometimes it seems impossible, just believe and it will happen.

Let us know how you are doing.

Peace and love, Janet