Chronic Myofascial Pain Myofascial Pain Syndrome Community Group
This group is for people who have Myofascial Pain Syndrome- anyone with a diagnosis of MPS is welcome to join. Our mandate is to provide support, information, and friendship to people with MPS.
I've NEVER joined a support group or purchased a self help book etc. I've always been strong and healthy and didn't believe in things like chronic myofacial pain syndrome. I thought that was a diagnosis for people who had "other issues" in their lives and needed to get over it....Until it happened to me. It's real and I've struggled now for almost three years. I went through a divorce and lost a lot of weight. I was already small so I was like a skeleton. It started slowly. I first had a headache up the right side of my head. Nothing worked. I discovered a knot near my shoulderblade on the right. I went to a massage therapist and that helped. I only had to go every three weeks. Now the knots are on top of my shoulders, both sides of my neck, upper back and now the sides of my upper back. I feel tightness going down now to the lower part of the back. I try not to fixate on it but it's taking over. I am at a computer all day. I will get a little better over the weekend, but I'm at work 20 minutes and I can feel by back start to tighten up. I try to concentrate on breathing. I started yoga, I take muscle relaxers and Lyrica and now have deep tissue massages weekly. It's costing me a fortune. It's keeping me from enjoying life and the pain is all consuming. I've stopped reading articles about it because it doesn't look like there's a cure. I can't go the rest of my life like this. I never want to be disabled but I'm terribly worried about working at a computer. I still have anxiety which makes it worse. My job is stressful and that makes it worse. Something stressful can happen at work and I can feel a knot come up in my back. The bad days are taking over the good ones. I believe the stress and anxitey keep it flared up but the pain is now causing stress and anxiety. It's like one big circle and I can't break out of it. Can someone PLEASE offer me some advice. I'm truly at the end of my rope with this. I expect that my boyfriend is sick of it and it's just a matter of time before he decides to find someone without these kinds of issues. I even stress about having to see him because i'm in pain and I wonder if I'm going to be able to go out. We went to a baseball game one night and i could not even sit still it was so painful. My entire upper back felt like it was on fire. I've been truly humbled by this and have much more empathy for people in pain.
For me, not doing enough sets it off and doing to much creates bad flare ups. It's a fine line to walk. Stress doesn't help at all. Certain physical movements will really irritate and flare it up fast, so I try my best to modify my movements.
As for working at a computer, can you get a sit-stand station. Where you can change height if your desk, so you can change posture more freely. Also, make sure to remember to take short breaks to stretch problem areas to hopefully ease those trigger points.
I totally understand the frustration of MPS, it isn't well known or spoken about. Like any chronic pain, my closest friends can tell when I am having a really painful day, those whom don't know me, interpreted me as bitchy... it does put stress on family, friends and your intimate relationship. It's hard for them to adapt, see you like that, yet alone understand how you feel. Recently, I ended up socialy isolating,loosing interest in things I loved to do, motivation is tough, which I know is bad. It's just all due to never having a few good days or more of a break from pain, to feel normal... after all these years, it is wearing on me. That's where I was happy to find a site with people whom have the same struggles, as its hard to find anyone whom understands it or going through it.
I've tried and been on numerous meds. Some worked well and others were a bad experience.
Please feel free to chat or ask me more. I understand the struggles and they are real and hard to accept. Together we can support one another and not feel so isolated.
-Neon girl
For therapy I have avoided deep tissue massage because I've found it doesn't really get at the trigger points. If you can see if a Physical Therapist in your area is trained in myofascial release therapy, especially the Graston Technique...it is really truly worth the initial pain of the first few treatments to get to where you really do soooo much better. Those knots are not going to unknit themselves. You got that first one and the inflammation and the knitting began. Your fascia tightened in that area and because they are all so connected it slowly spreads all over your body. My PT-MD has gotten me to the point where it's only my shoulders that are really painful now and I blame my rather large top parts for that. I have very few trigger points now when I see her each month and she can knock them down in 20 min. Please consider this. I had regular PT and massage for the first 12 yrs and it did nothing for me.
I will share what has worked for me:
I found deep tissue massage is great as a general relaxation of tension but in moderation, it doesn't tackle the trigger points directly. I see a massage therapist regularly (every 3 weeks-4 weeks) who works in myofascial release and trigger point therapy. It is a surprisingly gentle approach and keeps my trigger points to a minimum. I was also taught how to self release the trigger points, this technique is invaluable when done correctly. I use a lacrosse ball against a wall and find it can be done at work, home, travelling etc and catch the knot before it is well and truly activated or stop a flare up in its tracks. A therma cane/trigger point release cane helps to reach difficult places. I live in Australia and I bought one for $2.89 at Diaso a Japanese store.
I also use a tens machine when I am in pain and want to go to the theatre etc.. and must be seated for a while. I don't use it for long periods though and if you have a therapist who can show you how to use it that is best.
I also own an OSIM massage chair which has been a life saver for the times when I have had a big flare up. It is the one place I can sit and have it gently rolling up my back or shoulders keeping me relaxed.
After travelling to Japan 7 years ago and visiting many Onsens I now often ditch the shower and have a hot hot bath regularly at night. Not so good in summer though.
It is trial and error on what will work for you, but don't give up, as you will find a balance that yes will at times be upset, but will allow you to enjoy some of the things you like and keep you positive. Finding a really good therapist is the hardest part, mine retired 2 years ago and it took me 8mths to find another suitable one.