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.
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.
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.
Last edited by bluelakelady; 05-28-2005 at 10:01 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.
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.
You have such a wonderful way of putting things, I especially liked your comparison with docs and bugs. So very true. You are also right on when you pointed out that docs have terrible egos. My husband has a doctor who admits when he doesn't know. I have a lot or respect for him and he is a wonderful healer, not many western docs are healers who work with their patients...
Your posts are always funny and thought provoking, so glad you are here.
Myofascial release therapy doesn't just hurt a little, it hurts a lot if the problems are severe. However, its the only thing that is going to get to the root of the problem. The difference in stiffness, tension, and pain that you will feel after it has been done properly is night & day. It may take 2 days after to feel better, but you will if the therapist knows how to do it correctly. Sometimes it takes follow ups to complete the job, and unfortunately there is a chronic variety of it that keeps coming back eventually no matter what lifestyle modifcations you make. I get to go through it once a year or so. On my own I use tennis ball massage, stretching, and hot baths to deal with it, but there are places that it just isn't possible to treat it on your own.
Muscle relaxers, analgesics are just crutches to mask it, and myofascial pain can easily exceed even powerful drugs ability to deal with the pain and keep you coherent. (Yes, you can keep upping the morphine, but eventually it does get impairing.)
What is actually going on is: The fascia is like a shealth over your muscles, that allows your muscle to move inside of it (think of it like a lubricated condom) with some lubrication and against other muscles and bone. In a healthy person there is enough room for this to move smoothly.
Once you develop myofascial pain (or worse CMP), what has happened is that this shealth has become absolutely taught, like a piece of saran wrap wrapped tightly around the muscle and bunched up in places - it literally keeps the muscle from being able to fully flex, cuts off blood flow, causes muscle spasms, a ton of tension, and a hell of a lot of pain. The treatment is basically to seperate these two layers and break up the bunched up spots on it. Anytime you are seperating connective tissue layers (the bindings between them), this is going to hurt, and its probably going to hurt worse the next day as well. But the payoff is worth is if you can find a good therapist.
Good luck. I go in a few weeks for another treatment and I can't wait to get it done again. I hate the "tense" feeling of CMP.
As a fellow fibro sufferrer who takes medications for their chronic pain I feel that your statement that meds are a crutch to be condescending and short-sighted. Every single person who takes pain medications has a different reaction to them physically and mentally. To put such a negative spin on something that affects so many of us is not necesary. I understand that you also suffer and have taken or take medications, why you do not sound more understanding I do not know. If I am being sensitive, I apologize.
I edited my reply without looking at your post to me, now I wish I hadn't. You are a cruel person.
I liked the unedited one better.
I honestly have no clue what your objection is, though the rant in the unedited version gave me a good laugh.
Myofascial pain is a physical problem with a definitive physical cause, and has a proven treatment that can alleviate the suffering & fix the actual problem. It is no different than say a problem that requires surgery to fix it, you can do things to mask the symptoms, but the only way to get to the root of the problem is to have the surgery. Just replace surgery with myofascial release treatment and it is the same thing. Myofascial pain is intense enough (and because of the cause of it) that it can exceed opioids capacity to deal with it quite easily, and because of the nature of the problem is with the shealth itself and not with the muscle or spinal transmission; relaxing the muscles chemically doesn't really alleviate it, solve it, or prevent its further development. These are simple factual statements. Getting the release treatment done solves the problem. It is one of the few problems that come up on this board where we have an effective treatment that leads to good outcomes. If informing people about that is cruel, you have a weird definition of cruel.
perhaps it may be of importance to recall that we are all dealing with life altering illness. i have fibro and cmp. i do release therapy and take meds.
facia surrounds ever cell in our bodies. every cell.
maybe it's a rough day for both of you? if so, let's sleep on it and see what tomorrow brings.
I misunderstood how you were directing your information. I apologize for over reacting, I was very sensitive that day. When I said you were cruel I meant that it was wrong to say "it is always about me" when you know nothing about me. Let's leave it behind us. Life is too short to have such disagreements. Friends?
Last edited by hangin; 06-02-2005 at 10:22 PM.
this misunderstanding here amused me, really. We have those bad days where our nerves are coming out of our skins and I very well understand how both of you feel. I believe our tolerance level goes below zero, many many times. What I don't get is other people interfering and playing the referee and the wisest and the smartest and whatever ...est there is. I'm glad this opportunity came to that I could express how I feel about people giving various personal opinions, interfering in other people's discussions, giving advices about divorcing "nasty" husbands, etc etc etc
Many regards and painless days to everyone