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Posted 6/21/2012 6:19 PM (GMT 0)
I really need help to find all patients w/ cmp. & pateints families. Those patients no longer w/ us. Because of these. I can tell u about me. But i do think a lot of u. Have experience what hell & nightmare ive been through. A lot of us got ignore. Because a lot of them dont know what we have. & i know each of us can contribute to change that. & maybe to get our permanent cure. & maybe they will finally listen. Instead of stressing us out. Maybe u got some resources & idea. Pls post them here. I really want to know all of u. These is the only way i could think off right now. We can really help each other & help the researchers. That really helping us.
Posted 6/22/2012 4:37 AM (GMT 0)
Help&faith,

Welcome to the fibro forum. I'm sorry you're having pain. What, exactly, are your symptoms? We'd all like to get to know you, too.

Have you checked out the Fibro 101 thread? It's the 2nd thread on the forum, when you look at the list of threads...there's lots of good information in there.

Debbie
Posted 6/25/2012 11:00 PM (GMT 0)
Thanks debbie. No i havent check fibro 101. Ive been dx cmp. Then cmp & fm. Im positive i got cmp. For my muscle contracture. Fm not that sure. I get confused a lot. So maybe. I just know im so exhausted. & so tired dealing w/ these. & im truly hoping we can really be heard. Im not only dealing w/ pain. But dealing w/ my muscle pulling my spine. & i cant take it. I have read a lot of books. Trying the best i can to help myself whatever i can. But even doing that i get judge. They think just bcause i can move is nothing. i already identify my perputuating factors. & dont push my muscle limits. Thats why. It always hurts thought. Always taking meds. My spine is bad now. Because i used to rely on these experts. Now im still so lost. Im not only batteling w/ these. But batteling for how i live. The worse of all they want to cut everything. & want me to do the opposite. The things that will further injure me. Stuff that already made me worse before. I have spent a lot my own money. Ending up just paying for nothing. I just paid extra stess. Extra trumatic events to my life. Im not that old yet. I still want to do a lot of things. &
to be like these is not fun at all. I know trp's cant kill us directly. But those experts can. I almost did. If i did not do my own research. I can post my research. But i dont want to scare anyone. & i cant give advice.
Im not a dr. The problem is i think there is no really dr that specialize for muscle. I know theres few good dr. I got some now. Somebody wants to put a stop w/ that also. I used to ask other dr's to read my research. Either i got ignore. Or
somebody would say im the dr here. They rather hurt than to help me. & those care providers should be stop. I know im not alone. & i know there are patients out there. Truly needs help. If not all dr's can help us. Maybe we can. We need to be heard. Not only in forums. Cause i dont think. A lot of dr's would even bother checking these out. Oh ya. I ask dr before to read my chart. Bcause she advertise she treat myofascial. They want to charge me for that. The worse part. I know she doesnt know how to check me. Bcause the way she touches. & the way our positions. Who's lost again? Mine. Then she said to treat myself w/ the tennis ball w/o giving me test 1st. I already show her my pics. My muscle pop out. & i was not complaining of my foot. Im complaining because of my neck. & she advice for me to do stretching. Why? If they feel something on patients breast. Would they tell that to patient? To treat themselves w/ tennis ball. I can tell u more about the hell ive been through. But i have to stop for now.
Posted 6/26/2012 1:43 PM (GMT 0)
Hi, Help&Faith, and welcome!  We all do understand pain so we know where you are coming from.  My doctors think I might have MPS but it hasn't been officially diagnosed yet.  I do see a massage therapist that uses GENTLE massage and that has helped me a lot.  Sometimes the massage, even though it is gentle, is uncomfortable, but it's worth it because I feel better afterwards.

 

I use gentle stretching exercises, found in Fibro 101, and I do daily gentle exercises like walking, swimming, and yoga.  If I went to a gym, they would be carrying me out on a stretcher.  We can't do that...at least most of us can't...but we can do these things to help ourselves. 

 

I do think you need to start listening to your doctor, though.  From what you have written, you seem to think you know how to be treated and it's not what your doctor is telling you.  I get these muscle knots on my body from the muscles spasming.  Know what I do to relieve this pain?  I use a tennis ball that is between my body and the wall!  I bought a wonderful book called The Trigger Point Therapy Workbook on Amazon and it has diagrams of the body and shows where to put the tennis ball to get to the pain you are experiencing.  This is used for both fibro and MPS.  You see, a lot of pain is referred pain.  It's really starting in one place but affects another spot on your body.  I have had such bad pain that I couldn't sleep or get comfortable so I used the tennis ball trick and this calmed the affecting muscle.  It does work.  Here is a link to get the book if you would like to.  At least read the reviews and the success stories.  That should make you feel better.

 

http://www.amazon.com/Trigger-Point-Therapy-Workbook-Self-Treatment/dp/1572243759

 

 

In Fibro 101...the second link on this forum, there is a link about fibromyalgia and MPS written by one of the tops in the field...Devin Starlanyl.  This is a quote from her...

 

One of the most helpful exercise tools for TrPs is the tennis ball, but again, the patient must be taught how to use it properly. Empower

and educate your patients to manage their conditions. A specific self-management program tailored to a chronic pain patient's needs can significantly reduce health care costs while raising the quality of life, even when there are multiple conditions. (Lorig KR, Sobel DS, Stewart AL et al. 1999)

If I had a lump on my breast, I certainly wouldn't think I hurt a muscle.  I would think....tumor.  But, with muscles, lumps mean a completely different thing.  So, please start to listen to your doctor.  They do know what they are talking about.  Do what they suggest and then go back with the results.  Work with your doctor.  I think  you could have some help if you do.

 

If your spine is seriously hurting you, you might want to see a rheumatologist.  This happened to me and I found out I had something else that was causing the spine/leg problems and got seperate help for that. 

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from you soon.

 

Sherrine

 

 

Posted 6/28/2012 8:39 PM (GMT 0)
yes i did listen to dr's. Till i got very worse. & the problem w/ i got problem w/ my spine. because of that. Because they keep on telling me to move & stretch. I dont have those before the early stage. I got it from them. The ball might help for muscle. Doesnt help if my muscle is pulling my spine out of allignment. & i heard my spine cracking & leaking. & i dont think rheumatologist. Can cure what happens to my brain. & my eyes. Because yes i did listen. & yes i know more than almost of them saw me. Cause i heard it. I feel it. I suffered & suffering from it. I got pictures & mri's to prove it. Now should i keep on listening? & if i did not do anything to seek help. Im probably in a coma now.
Posted 6/28/2012 9:00 PM (GMT 0)
Inregards of devin starlanyl wrote. Yes i agree w/that. If does people have teach me the right thing to do. & they did not make me believe that i got something else. Have u read her book? Pls do. & tell me all of that. What happens to patient like me/ us? Coz that happens to me. Good thing u can still swim. Me, i cant even get tired. Im only in my 30's. U think these kind of life. I want to be in? Think again. Ive been spending my own pocket to find my cure. So pls dont tell me. about healthcare cost. & thats the reason im here. & the lump in the neck. Do u think thats common? Do u think nothing traps my circulation. Because of that. So muscle doesnt do anything w/ it? Pls do read dr.travel book too. If u have cmp. Pls be very careful w/ ur exercises. & if ur 1 works w/ those kind of people. Pls do all ur research. Before u can just say all of that. U dont know what ive through. & going through

Post Edited By Moderator (Acheybody) : 6/29/2012 4:25:52 PM (GMT-6)

Posted 6/29/2012 12:50 AM (GMT 0)
& if ur just 1 working for those insurance comp. Pls have consciense. & be very careful for what u wish & u claim for. For these illness. & before u reply about recommendations. I know neuro is for brain. It got injured because i have lost my oxygen to my head from my neck. & really pls just dont copy & paste a small paragrap of ur very tiny research. Ive read that. & ive been re living the same of those patients before me. Till now i still find it amazing u can still swim. If u got what i have.

 

Post Edited By Moderator (Acheybody) : 6/29/2012 4:26:38 PM (GMT-6)

Posted 6/29/2012 10:31 PM (GMT 0)
Help&faith,

We are all here to help eachother the best we can. You are obviously in a world of pain, and Sherrine is a very compassionate person, so she is telling you her experience to try to help you. Please don't think anyone here is working for an insurance company! That's not what Healingwell is about.

I edited your post because this is a family site - hope you understand.

Debbie
Posted 6/29/2012 10:53 PM (GMT 0)
Oh my word!! No one here is workin for the Insurance Companies. Please don't knock our Volunteers! They are all here to help us out the best they can. God Bless!!!
~Kathy
Posted 6/30/2012 8:35 PM (GMT 0)
I just really dont appreciate her very small paragrap of that research. Gives more headache. I know a lot of here trying to help each other. & im here to find my cure. & to be heard. Let does dr's really know what we have. & stop hurting patients like me more. Its very easy to give advice for a person. Did not go through all of that. I hope she did her research more. & really read what i posted. Sounds like shes worried about the healthcare cost? When im even worried for how would i live. Im looking for patients. Not volunteers. So maybe. Somebody will be willing to study us more. Maybe then the issue of healthcare cost will be greater minimize. Something is giving these pain. That needs something a real permanent cure. & stretching or ball doesnt help in other people
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