ARANGER
05-28-2005, 09:41 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.
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.
Sponsor
rosebuddy
05-28-2005, 05:41 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
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
05-29-2005, 12:58 AM
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
doctors are like bugs. some are very good for the garden and others are pests.
giggle,
peace,
bluelakelady
ARANGER
05-29-2005, 01:31 AM
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
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, 02:55 PM
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
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
hangin
05-30-2005, 03:03 PM
BLL,
You have such a wonderful way of putting things, I especially liked your comparison with docs and bugs. :D 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.
Peace and love, Janet
You have such a wonderful way of putting things, I especially liked your comparison with docs and bugs. :D 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.
Peace and love, Janet
Tyneyboy
06-01-2005, 11:04 AM
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.
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.
hangin
06-01-2005, 05:49 PM
Phopheros,
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.
Hangin aka Janet
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.
Hangin aka Janet
SarahF
06-02-2005, 12:42 AM
Great explanation Phopheros about CMP. I have both CMP and fibromyalgia and myofascial release has done wonders for the CMP. And yes - it does hurt a lot - but then the freedom I feel - wow.
Tyneyboy
06-02-2005, 12:44 AM
It's always about you... ha
I wasn't referring to you at all, I was talking about the condition itself.
I wasn't referring to you at all, I was talking about the condition itself.
hangin
06-02-2005, 12:54 AM
Phosperos,
I edited my reply without looking at your post to me, now I wish I hadn't. You are a cruel person.
Janet
I edited my reply without looking at your post to me, now I wish I hadn't. You are a cruel person.
Janet
Tyneyboy
06-02-2005, 07:18 PM
Phosperos,
I edited my reply without looking at your post to me, now I wish I hadn't. You are a cruel person.
Janet
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.
I edited my reply without looking at your post to me, now I wish I hadn't. You are a cruel person.
Janet
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.
bluelakelady
06-02-2005, 08:13 PM
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.
peace,
bluelakelady
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.
peace,
bluelakelady
hangin
06-03-2005, 01:18 AM
Phopheros,
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?
Janet
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?
Janet
tutti-fruti
06-03-2005, 06:07 AM
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
Many regards and painless days to everyone
tkgoodspirit
06-08-2005, 02:13 AM
Hi,
Unfortunately I just now read all these posts and replies, while I was searching for something else entirely.
Tho I'm saddend that exchanges like this happen, I'm glad that you all settled things. I knew you would! :) Everyone has a lot to offer here, and yup, sometimes, people take things the wrong way. This is life, it happens here and it happens other places, like our homes, or our jobs, etc.
I am a little confused reading words like "referee's, or "wisest", "smartest" etc. I am confused how giving personal opinions to others here who usually are seeking out those opinions is interfering in other's discussions.
From what I've read on the boards, I have never come across anyone claiming to be wiser or smarter than anyone else here. And when someone is having personal problems regarding their home life and they post those feelings, I'm guessing they are looking for support and advice, or help in a round about way. I think that giving someone a sympathetic shoulder to lean on or an understanding bit of advice is anything BUT interfering. To me, it's simply comfort.
When on the rare occassion that words are misunderstood and feelings are hurt and a person steps in to "calm the waters" so that the posts don't go back and forth and back and forth, causing more feelings to be hurt, is not, IMO interfering or being a referee. I look at it as someone who cares a great deal about the people involved and most likely is trying to "lighten" the mood with an unobjective point of view that may not be recognized by those whose feelings are involved.
Pain brings about some pretty intense emotions. Not everyone here is going to see eye to eye, personalities are going to clash, but mutual respect, regardless, is always the big winner when on the rare occassion, tensions get a little high.
No one here is smarter or wiser than anyone else who posts. We all have our own source or knowledge, and I'll be the first to admit there are a heck of a lot of folks here who know more about a lot of things than I do. But when I DO know something and I'm pretty sure of what I DO know, I share it with people because I want them to know it too. I seriously doubt that anyone here considers me smarter or wiser just because of my posts. We each have our own gifts. Blue has the gift of eloquent words, Glojer has the gift of wisdom, Janet has the gift of being a sweet soul, I have the gift of gab, (I could go on, we all know that for sure! :) ). The fact is, we all have gifts, and I love everyone of them!
I love everyone one of you and please please keep on doing what your doing, ALL of you. I love to read your posts, your heartwarming stories, your extreme knowledge of medical information, your sorrows, your joy, and if I can offer advice when you need it, I consider myself honored, and when you offer me advice about a personal struggle I'm going through, or technical information about a certain type of med, or procedure, I consider myself lucky and blessed. Most of all, I consider myself humbled to be part of such a beautiful and diverse group of souls. We ALL are truly THE BEST OF THE BEST!
Here's wishing you all a good spirit,
tk
Unfortunately I just now read all these posts and replies, while I was searching for something else entirely.
Tho I'm saddend that exchanges like this happen, I'm glad that you all settled things. I knew you would! :) Everyone has a lot to offer here, and yup, sometimes, people take things the wrong way. This is life, it happens here and it happens other places, like our homes, or our jobs, etc.
I am a little confused reading words like "referee's, or "wisest", "smartest" etc. I am confused how giving personal opinions to others here who usually are seeking out those opinions is interfering in other's discussions.
From what I've read on the boards, I have never come across anyone claiming to be wiser or smarter than anyone else here. And when someone is having personal problems regarding their home life and they post those feelings, I'm guessing they are looking for support and advice, or help in a round about way. I think that giving someone a sympathetic shoulder to lean on or an understanding bit of advice is anything BUT interfering. To me, it's simply comfort.
When on the rare occassion that words are misunderstood and feelings are hurt and a person steps in to "calm the waters" so that the posts don't go back and forth and back and forth, causing more feelings to be hurt, is not, IMO interfering or being a referee. I look at it as someone who cares a great deal about the people involved and most likely is trying to "lighten" the mood with an unobjective point of view that may not be recognized by those whose feelings are involved.
Pain brings about some pretty intense emotions. Not everyone here is going to see eye to eye, personalities are going to clash, but mutual respect, regardless, is always the big winner when on the rare occassion, tensions get a little high.
No one here is smarter or wiser than anyone else who posts. We all have our own source or knowledge, and I'll be the first to admit there are a heck of a lot of folks here who know more about a lot of things than I do. But when I DO know something and I'm pretty sure of what I DO know, I share it with people because I want them to know it too. I seriously doubt that anyone here considers me smarter or wiser just because of my posts. We each have our own gifts. Blue has the gift of eloquent words, Glojer has the gift of wisdom, Janet has the gift of being a sweet soul, I have the gift of gab, (I could go on, we all know that for sure! :) ). The fact is, we all have gifts, and I love everyone of them!
I love everyone one of you and please please keep on doing what your doing, ALL of you. I love to read your posts, your heartwarming stories, your extreme knowledge of medical information, your sorrows, your joy, and if I can offer advice when you need it, I consider myself honored, and when you offer me advice about a personal struggle I'm going through, or technical information about a certain type of med, or procedure, I consider myself lucky and blessed. Most of all, I consider myself humbled to be part of such a beautiful and diverse group of souls. We ALL are truly THE BEST OF THE BEST!
Here's wishing you all a good spirit,
tk
tkgoodspirit
06-08-2005, 02:36 AM
Okay,
Now, CMP, one word...UGH! An upper back full of knots like little "super balls"! (anyone even remember those?)
I don't have an "official" dx of CMP on paper. I swear I'm taking a tape recorder with me to my docs appts so I get it on tape what they don't put on paper! OOOO, I just hate that. Here you are telling other dos "this doc said this or that" then when you get the office notes, none of what he/she told you out loud is in the notes! So, I'm giong to record my visits! LOL
Anyway, I did have a Rheumy tell me that it is very common for CMP and FM to overlap. Being that FM is a connective tissue disorder, it only makes sense that the fascia around your mucsle tissue would knot up.
The pain is awful. And yes, I agree with all of you who have had Trp release therapy, that is the best relief of CMP. Also, most people with FM, have Chronic Myaofascial Pain Syndrome. Those people who don't have "chronic" fascia pain are usually atheletes, or folks who have begun a rigorous exercise routine. They get their treatment and don't have that type of pain again, or at least for a long time. Folks like us, whose muscles are messed up because of the lack of use, and the damaged tissue, develop "chronic" fascia pain. Simply meaning, it's ongoing. Even after the Trp massage therapy, it won't be long before the knots redevelop. Stinks! I think, depending on the cost ( I haven't gotten the bill from April's therapy yet ), that I'll try and do it at least every other month or every two months. It eventually gets to the point where the pain is so bad, that you can't breathe without feeling pain.
And the pain of the Trp release is mortifying, but worth it. Tears of pain and relief! :)
I'm like you Phospherous, I lay on tennis balls! My golden retriever always looks at me like "Hey, those are MY tennis balls". I use them on my butt cheek to help with the pain that radiates there from the herniated discs in my lower back.
There is a product you can buy called THE BACK BUDDY. You've probably heard about or seen it. It's a big "S" shaped piece of strong plastic(?) with two knobs on either end of the "S". It has a hand grip and you just place the curve across your back and sue those knobs to "release" the trp. I don't have one, but I'd be willing to try it. I'd try anything! I've leaned against door jams before!
Also, yes, to your questions about a Rheumy usually treating CMP or FM. They are most familiar with the musculalskelatal system as well as the connective tissues. Neuros are good when dealing with any kind of nerve damage, which can sometimes happen when the trp's become badly inflamed. Pain docs are great, they want to see you in as little pain as possible. My Rheumy give Trp injections, but I don't get too much relief from them, and from what I've read here, they don't have a good relief rating. Anti-inflammatories in the way of muscle relaxants and anti-spasm meds work, as do those Lidoderm/Lidocaine patches. I like them the best! The injections do inject Lidocaine, but they wear off. Kinda like any of you who have had the ESI's for the discs in your neck or lower back. They are good the second or third time, but then they fizzle out quickly.
I think we can all agree, the CMP is the "Enemy"! LOL
Here's wishing you all a good spirit,
tk
Now, CMP, one word...UGH! An upper back full of knots like little "super balls"! (anyone even remember those?)
I don't have an "official" dx of CMP on paper. I swear I'm taking a tape recorder with me to my docs appts so I get it on tape what they don't put on paper! OOOO, I just hate that. Here you are telling other dos "this doc said this or that" then when you get the office notes, none of what he/she told you out loud is in the notes! So, I'm giong to record my visits! LOL
Anyway, I did have a Rheumy tell me that it is very common for CMP and FM to overlap. Being that FM is a connective tissue disorder, it only makes sense that the fascia around your mucsle tissue would knot up.
The pain is awful. And yes, I agree with all of you who have had Trp release therapy, that is the best relief of CMP. Also, most people with FM, have Chronic Myaofascial Pain Syndrome. Those people who don't have "chronic" fascia pain are usually atheletes, or folks who have begun a rigorous exercise routine. They get their treatment and don't have that type of pain again, or at least for a long time. Folks like us, whose muscles are messed up because of the lack of use, and the damaged tissue, develop "chronic" fascia pain. Simply meaning, it's ongoing. Even after the Trp massage therapy, it won't be long before the knots redevelop. Stinks! I think, depending on the cost ( I haven't gotten the bill from April's therapy yet ), that I'll try and do it at least every other month or every two months. It eventually gets to the point where the pain is so bad, that you can't breathe without feeling pain.
And the pain of the Trp release is mortifying, but worth it. Tears of pain and relief! :)
I'm like you Phospherous, I lay on tennis balls! My golden retriever always looks at me like "Hey, those are MY tennis balls". I use them on my butt cheek to help with the pain that radiates there from the herniated discs in my lower back.
There is a product you can buy called THE BACK BUDDY. You've probably heard about or seen it. It's a big "S" shaped piece of strong plastic(?) with two knobs on either end of the "S". It has a hand grip and you just place the curve across your back and sue those knobs to "release" the trp. I don't have one, but I'd be willing to try it. I'd try anything! I've leaned against door jams before!
Also, yes, to your questions about a Rheumy usually treating CMP or FM. They are most familiar with the musculalskelatal system as well as the connective tissues. Neuros are good when dealing with any kind of nerve damage, which can sometimes happen when the trp's become badly inflamed. Pain docs are great, they want to see you in as little pain as possible. My Rheumy give Trp injections, but I don't get too much relief from them, and from what I've read here, they don't have a good relief rating. Anti-inflammatories in the way of muscle relaxants and anti-spasm meds work, as do those Lidoderm/Lidocaine patches. I like them the best! The injections do inject Lidocaine, but they wear off. Kinda like any of you who have had the ESI's for the discs in your neck or lower back. They are good the second or third time, but then they fizzle out quickly.
I think we can all agree, the CMP is the "Enemy"! LOL
Here's wishing you all a good spirit,
tk
EffieH
08-08-2007, 10:10 PM
I'm an extreme CMP newbie here, I was finally diagnosed with CMP two weeks ago, after a year of suffering sometimes extremely intense pain . . . reading your descriptions of CMP here sounded so familiar -- last fall the pain was so bad for so long that I was seriously considering ways to get to heaven a little quicker, if you know what I mean, (not sure if I can say the word on this board?). I would be crying my eyes out by the time I got home from work and the pain and nausea were so bad I couldn't eat dinner - I lost 15 pounds -- I would overdose on OTC pain medications because I didn't want to ask a doctor for anything (although I did get put on Vicodan for a few days and that was an absolute nightmare). I could not find a doctor who would even look at more than one little part of my body (mostly my fault because I kept seeing orthopedists because I didn't know who else to see) and I kept getting diagnoses of "cubital tunnel syndrome" and "strained back muscle" that I knew in my heart were not right because all my pain and other symptoms were so obviously related to each other -- I read here some of your descriptions of the "burning skin" sensation -- I had that, too, along with horrible nauseating cold sweats at night - which I attributed to menopause, which I'm also going through right now, too. I didn't start feeling better until, out of desperation, I saw an acupuncturist in January, and amazingly, the worst of my symptoms went away, although I was still left with chronic pain on a daily basis. Then I started seeing a chiropractor in February of this year and was feeling almost all the way better until June when I attempted to take a yoga class and quite a bit of the pain came roaring back. (I've only started feeling better again this past week and right now I'm afraid to move, basically, for fear of triggering all the pain again!) I finally got fed up and went to my primary care physician two weeks ago and demanded a diagnosis -- I had made up my mind to specifically mention the knots in my back and how they seem to directly affect how much pain I'm in, all the way from my neck down to the tips of my fingers -- at first I was confused when she told me I had chronic myofascial pain -- I said I know I have chronic pain, but I want to know what is causing it, I want a diagnosis! And she said, that IS the diagnosis!! And she explained to me what has happened . . . now I'm feeling happy that I have a diagnosis, and also sad, because I'm wondering is this something that I have to live with for the rest of my life now?? I've also been seeing a massage therapist weekly for a couple of months now, and as soon as I got the diagnosis and learned about trigger points, I asked her if she knows trigger point therapy, and she did, and she has been doing that for me, twice now, and I think that has made a difference! I also contacted a clinic that advertises that they do trigger point injections, along with diet and naturopathic remedies -- I have an appointment there next week. My primary care physician sent me to a physical therapist -- but he really didn't seem to know what to do for CMP. After reading my "Triggerpoint Therapy Workbook" I'm sure I have triggerpoints in my rhomboids, and I may have one or more in my pectoralis minor muscle (can't really tell what muscle it's in, but its in that general vicinity, and I may have even more in other areas) and I promised myself that I wouldn't let anyone hurt me, and when the physical therapist told me I should try to sit up straighter and pull my shoulder blades back frequently, which the book specifically says you should NOT do, I decided I would not go back there. I'm really hoping the clinic I go to next week can help me, because I'm determined to try to get better . . . just typing this is making my back, elbow, wrist, and my shoulder, etc. hurt so I better stop now! But I've made it all day today with no OTC pain medication and that's a plus!! This is the first diagnosis I've gotten that makes any sense and fits ALL the symptoms I've had! Finally! . . . anyway -- thanks for all the posts, they were very helpful and feel free to post any and all advice you can think of here, because I'm eagerly devouring all of it!!:angel: