Anyone with myofascial pain syndrome?
 

My docs seem to be looking into the pain syndrome and possibly fibro. Also mentioned trigger points. I have read some about it all, and think the pain syndrome is what is wrong with me. I have an appointment with a rheumatologist in December.
Guess I am wondering if I belong on this forum now...more than on the spinal disorders? At this point in my life I am so confused I don't know where I am or what I am doing! Pain, frustration, and depression are giving me a fit! I have lost my sense of humor and am desperately trying to find it. :confused:

Slogo, I'm sorry did you just read my mind and post this, as it sure sounds like it came from me.
I'll tell you I have never been so confused in all my life, this all started I believe with a fall and spine injury, yrs and yrs of fighting WC and losing (almost everything) then only to find out I have permanant damamge and am disabled due to the damage from the fall.
Now on top of all that and all I have been through over that, the drs believe I have lupus and what the say is underlying fibro, whatever all this is suppose to mean.
All I know is my life as I knew it ended 7 yrs ago this past June. I don't know what causes what pain and what symptoms, I just know I'm in pain 24/7 no matter what meds I take or what I do or don't do and I suffer from CF and well the list just goes on and on.
It seems like no matter how much I read and research all this my mind just won't absorb and process and I always loved using my mind and doing research!!
Sorry didn't mean to hi-jack your thread, I just wonder if this is how you feel about some of which you have going on.
I just don't know where I belong anymore as my dx's are always maybe and possible..
Hope you are able to get better answers then I have .
Lot
s of luck,
LindaM(suede)

Below is a link to a website that explains what CMP (chronic myofascial pain) is and how it differs from fibro, and all about trigger points, etc....

http://www.sover.net/~devstar/

The author of the website is also the author of the BEST book about fibro and CMP (and in my opinion the book should be required reading for anyone with fibro and/or CMP and any medical professionals who diagnose and treat fibro and/or CMP).

I have both fibro and CMP and if my hands weren't killing me tonight I would write a lot more info.... but for now I will leave the link, and hopefully tomorrow I will be able to type a lot more :)

Liz

Oh my, bless your heart Linda, you have it worse than me! So sorry. Mine started with some falls, then neck pain, back pain, headaches from hell, muscle jerks for 13 yrs, plus chest pain as bad as heart attack pain...only not coming from my heart at all. Got to the point I had to have C-spine surgery to keep me from a wheelchair, wearing diapers...with someone having to feed me! Then the jerks did not stop like we thought it would after the surgery in Oct last year. Now Ns said to go to a gastro doc to see if chest pain was from stomach...NOT.......gastro said go to a neuro....neuro says go to a rheumy....does it ever end? I did find the myofascial pain syndrone to have a lot of the symptoms that I have...so maybe???? I do know that I feel better if I just don't do anything soooooo, that is what I do! I feel so weak and weary if I try to shop, walk, exercise at all and it only causes pain. I have had a bad neck and shoulder pain all day today and why...I have no idea. Maybe I slept wrong. I think I am ready to just quit being a person at all! LOL
I do hope and pray we both find answers and soon! Hugs, gaye

I'm sorry ya'll are having such a rough time, Slogo & Linda. :(

My fibro was brought on by an undiagnosed chronic abdominal pain I've had for the past several years. I also have intermittent myofascial pain. The biggest difference between the tender points of fibro and the trigger points of CMP is that when you press on a tender point the pain is localized, like pressing on a very sore spot or a bruise. When you press on a trigger point, you feel pain shoot along a pathway through a certain area of your body. My worst trigger point keeps popping up on the left side of my back, and when anything pushes or hits it I feel sharp pain shoot down through my left hip and thigh, and my left leg all but gives out.

My big worry is, if they ever find out what's causing my abdominal pain and can fix it, will the other stuff go away? Some docs tell me yes and some are doubtful. I read once that after two years, the odds of recovering from fibro are less than 5 percent. I don't like those odds at all!

I hope everyone starts feeling better soon. Good luck to you all!

Liz that is the info that I found when I first went looking for info. It is very good and I have printed it out and keep it in a folder. I'm glad you put it on here...now others can find it too! :)
Sorry your hands are so painful and hope they are much better tomorrow!

Idealist, does your pain actually come and go? I have found that I can stop the pain if I sit and do nothing. If I try to keep the house clean or go shopping too much it all starts right back up with a vengence.
When the gastro doc pressed on my back in the thoracic area the pain went all the way through to the front of my chest. I thought that was a bit strange. Years ago when a doc pressed on the fibro points I felt a bit sore , yet later I was in some heavy pain. seems like I always hurt after they press on them and it gets progressively worse from there. I do the same thing after exercise or housework...I will start hurting a few hours later and then it is too late to stop or do anything about it. does that make sense? Gaye :)

Liz,
Thanks so much for posting the link, I'll try reading and hopefully be able to absorb.
I understand about hands hurying, I have much the same problem, I hope that you are feeling better soon.

Idealist,
I hope your stomach pain is cleared up soon and you find answers.
I just had a test done(can't remember the name) with camera in my stomach as it hurts so bad, the dr said I have a ulcer that is almost healed and well actually should be healed by now, I can only say my stomach still hurts as bad and the dr says, he doesn't know why...Good Luck!!

Gaye,
We must be related we could write the same story except I haven't had the surgeries you have, yet and hopefully not.
I'm going through we rreal deliema right now with guilt over not doing anything,
Like you as long as I do nothing I'm okay, I can only sit or lie for a short period of time then have to move around and then go back but even when I'm moving around I can't do anything, I'm having a very hard time with keeping even the bills and cuch paid right now and it's the only thing I do and DH does everything else and he is just no good with a check book or finances.
He has been working so hard trying to keep our head above watersince I no longer bring in a income that his health is failing now.
Sorry for the whine I have just been holding it all in for so long I think that is probably what is eating me up from the inside out!!
Hugs, Linda(suede)

Hi Gaye! The myofascial pain comes and goes, but it is, as you say, much worse when I move a lot. The fibro is an up-and-down thing. I first diagnosed that myself, a few years ago. In a way it was kinda funny. I read about fibro on a website, and the symptoms sounded mighty familiar. So when I found a map of the tender-spot locations, I started pressing around on myself and found out (to my twisted delight) that I had a bunch of them all over. I didn't know then that the fibro was secondary, so I thought I had diagnosed ALL my problems. Anyway, the next morning when I woke up I was so sore it took me half an hour to get out of bed. My family laughed at me when I told them about it, like "you idiot! when you found out that it hurt, why did you keep on poking yourself?"

Linda, I just had that procedure done, too. It was called an endoscopy. I've found that Prevacid helps my stomach pain a lot, even though I'm not sure why. Don't let the guilt eat away at you like that. I know, easier said than done. But still, it ain't your fault, so don't blame yourself!

Suede/Linda, you are not whinning, you are sharing your heart with friends that care! That is why I am so thankful to Doc Jon for making us a forum to get the old BT folks on. I missed all the love, kindness, caring, sharing, venting, and the chances to learn about our conditions. We need each other to bounce off of and to find out that our guilt, and for myself, useless feelings are normal! :D I get the ole "oh but you look so good" comments. well, pain does NOT HAVE A CERTAIN LOOK! Oh my....I have started to rant...slow down gaye! :rolleyes:
By the way I too pay all the bills and stuff. I can't remember anymore what I have paid and what I haven't. LOL I have such a bad case of brainfog!

Idealist, you are so smart to do your own pain exam! I think I will check out mine too, good idea. I do know that I have a spot on my chest that if I touch it all, the thoracic pain will start up immediately, so I try to NEVER tough that spot. found out the hard way. Gaye

Idealist and Gaye, Thanks for the kind words and support!
It's so appreciated. I'm just down in the dumps and trying not to let it grab me and take me down in to that awful dark pit I can't climb out of.
I keep telling myself if I fake it long enough I'll make it, sometimes it just doesn't work though.
Hugs, Linda

I know that feeling, Linda. But you can't fake it - you gotta break it. Whenever I get depressed that way I feel like it's going to last forever, and I'll never be happy again. But sooner or later things do get better. Not great, but better. I hope you start feeling better soon. If there's anything at all you want to vent or commiserate about, feel perfectly free. We've all been there before, so we can usually understand, and sometimes even help a little.

Hi Slogo. I don't know how smart I was, but at least it worked! I've been doing tons of medical research ever since I became ill, and I examine myself all the time. Hope I don't get narcissistic!

Hope ya'll feel better and better! :) :) :)

Hello everyone,
I was wondring if you have read about thoracic outlet syndrome also?

quite a few of the symptoms can overlap with fybro & CMP and
c -spine troubles.

especially if your pain is more upperbody- neck/shoulders upperback?
vs all over pain?

I was able to save a big list of links that are now posted at the top of the TOS {thoracic outlet syndrome} forum- and there are RSD, CMP & fybro links in the list too. Along with various treatment links and other info.

Have any of you tried chiropractic care?
I mean a very good one- expert & knowledgable about soft tissue and chronic conditions?
especially if you had a fall, car wreck, sport injury ect- sometimes it doesn't take much to get you out of alignment.

I happened to find a very good one that does soft tissue tx as well as adjustments.

I'm somewhat hypermobile -so I can get "out of wack" pretty easily.

nice to meet you all

Hi, Jo. Thanks for the info. I gave the links a glance, and I'm going to check them out more thoroughly later. I never really knew much about TOS.

How does chiropractice help with soft-tissue pain? I thought it was mostly for your joints and spine, and maybe your muscles. I have undiagnose soft-tissue pain in my abdomen, and meds are only marginally effective in helping it. I'm always looking for better ways to manage it more naturally, and I thought about chiro before, but didn't see how it would benefit me. I've thought about acupunture too. Have you ever tried that?

mine uses a variety of therapies after the adjustments, if I need them.
like soft laser, ultrasound, NIMMO {a deep tissue/triggerpoint type of massage tx}, infra red {before he got the laser}

I used to think the same thing - chiros did spine care only, but a good and expert one will help with the whole body.

if you look thru the chiro links {they explain it all much better than I can} you will see how being out of alignment can affect the whole body.
I can't promise that it will be a fix or help for you but going for an eval or 2 might be a good thing- just to see what they say.
plus you get a feel for the DCs personality before commiting yourself.

just as anything there are good and bad ones so check around if you decide to try it, so your not wasting time at the wrong place.
ps - no never tried accup.

HI All!

It's so nice to see the fibro people again!

Slogo, I have CMP pretty bad. I noticed someone said their CMP comes and goes. My CMP is ALWAYS there, some times better than others. You can touch me hard anywhere, literally, on my body, and it hurts. Some places with just a feather of a touch.

My fibro comes and goes though I haven't had a really major flare in awhile.

I started on Cymbalta when it came out to try and address my pain issue with the fibro and CMP. I didn't think it was helping so I decided to lower my dose. I was SO shocked when I woke up one morning after that and all these familiar pains (that I had forgotten about) were back with a vengeance. So I took the dose back up to 90 mg.

I'll never forget when I was first diagnosed. It was the first and biggest flare. I was dying inside from the pain. I'd go home at night after work and throw blankets in my dryer to get really hot, then just wrap myself up in them. I hurt every where possible.

After an intiatial diagnosis of some phantom pain, and a couple more doctor visits, I was diagnosed. The pain was so severe with the onset that my doctor put me on percodan and I blessed the day he was born. It was the only thing that got rid of the pain that time.

I also remember after being diagnosed I was initially shocked and felt very sad.

Now I can look back on my life and recognize diseases and symptoms that all are related to the fibro.

It's difficult to deal with.

I can't remember right now the type of specialisst who finally diagnosed me. LOL, must be that ole fibro fog! (Couldn't be my age!) One of those who specializes in arthritis etc, whatever they're called.

Good luck!

Jo, I just saw your post about chiro. I would really like to be able to get into that, but my chiro experiences have been awful. My spine is a huge mess, primarily from multiple (and I mean multiple!) car accidents and other injuries, and now arthritis. Bulging and herniated discs, etc....

When chiros especially manipulate my cervical area, I leave in much worse pain then when I went in.

Wish I could. I know so many people who do chiropractic.

I go to a very good masseuse twice a month. Wish I could afford to go every week because that helps some.

Wittesea, thanks for that link!!!! It describes me to a T.

Slogo, this page at that link is very informative.

http://www.sover.net/~devstar/define.htm

Doody, I am like you I am sore everywhere! It is easier to name what DOES NOT hurt than what does, cause I have few places that are not sore. I am going to start calling the rheumy's office soon to try to get lined up if someone cancels. My appointment is not until Dec 16 and THAT is a long time. I want some answers and help soon.
That site you put on here is great isn't. PainFree on the BT forum pointed me in that direction and I am so grateful. It describes me to a tee. Gaye :)

I sure understand Logo! My masseuse is a dream, and she is also an RN. One of her specialized areas is fibro and CMP. She can tell where my pain is and is very careful.

When I talked about that very first fibro flare I had, I guess I forgot to say the lack of diagnosis. When my doc sent me to the rheumy, the rheumy said I had a virus running through my system.

The pain lightened up a little for about a month, then came back again with a vengeance. My doc put me back on percodan which was the only thing that killed the pain, and again sent me back to the rheumy. This time he said I had fibromyalgia and chronic myofascia pain.

My symptoms were classic. I hurt on both sides of my body in exactly the same places, which is characteristic of the fibro. But this myofascia stuff is a beeeech! My doc told me back then that the FMS and CMP were basically the same thing. I always wondered about that. That's why I'm so glad to see Wittesea's link! Those 2 'syndromes' may run in a pack, but they are 2 entirely different pains in my opinion!

Now I have arthritis added to that list so that hasn't been a peach of news either. My hands are getting really hard with it. To top that off, I've developed another really strange disease called Depuytren’s contracture. When I went in to the hand specialist for what was diagnosed tennis elbow, he looked at my hands and said, "When did you start developing the lumps on your palms? You have Depuytren’s contracture."

Huh? What? I kinda wondered what the lumps were but they started on my right hand so I figured it was just from my intensive computer work and the mouse was hurting my hand. But then the lumps started on my left hand too, so I wondered. Well, now I know. :p It sucks. And now I'm noticing that when using the mouse, the ones on the right hand are really irritated.

You probably never heard of it, I hadn't. A description:

Which is WAY more than you ever wanted to know, right? LOL!

So far mine is under the ring fingers of both hands. The lumps are very clearly seen. They're about the size of peas right now.

Anyway, if you read all this, I am in awe. :D Take care.

I read the WHOLE THING Doody! It is good to share and read about what we are going through, in order to be able to understand it all. The more informned the better we can handle our doc visits. Doc visits sure need something...I hate them and NEVER get much help out of them. Maybe rheumy will be different...hope so.

My DIL has the hand problems and has had surgries to help improve hand movement. She has a lot of pain and swelling in both hand. It is a hard problem to deal with and I am sorry you got that too Doody. Hugs, Gaye

Hi, everyone. I also have fm brought on by a car accident. I also dianosed this myself about 1O yrs ago. I don't really know when the mps started,I think it probably started from cutting and blowdrying hair all day everyday(Iwas a hair stylist for many yrs,but can't do that anymore)Yes, the trps of mps travel around.. It might be in your back and u massage it some and then u have a huge knot on the bottom of your foot. What I don't understand is "the secondary fibro" as far as i know each disorder is separate. I knowfm by itself can cause all kinds of crazy symptoms like,brain fog,no sleep,strange reactions to medsetc....An idea for those of you w/stomach trouble. It seems helpful for some to quit eating anything white. Basically nothing with sugar or bad carbs sugar. Also I say if it does'nt rot or sprout throw it out. I try to stick to that philosophy as much as possible.although i'm not always sucessful w/that it does help some.Also taking a high quality pro-biotic may help because it gets rid of bad bacteria in your gut and replaces it with good.I hope some of this could be helpful.:) It was nice to participate in this discussion.:D :D

Myofascial Pain
 

I have it! I posted the same thing yesterday.... I guess we are on the same wave length. The pain is brutal. I really need to be more involved in this group. I have written out here a couple of times. I will try to do better...
Lilith