Myofascial Pain Syndrome Support Group

I'm going to suggest you do a stick drawing to pinpoint your pain, keep a journal, and once you see any type of pattern, you'll be able to find your trigger point(s).
Anxiety adds to the discomfort, so find simple movements that help you to calm your well-being, and this may help reduce the tension, which is still present when you are attempting to rest.
Best wishes.

Welcome to the group, Simply. I'm sorry that you are in pain. You're at the beginning of this journey and that's a good thing. The earlier you catch MPS, the easier you are to rid yourself of it.

I tend to agree with your doc that too many meds are a bad thing in the long run. That being said, some meds are necessary to be functional enough to work on the muscles and have some quality of life. This is a controversial topic and a personal decision. That's my opinion and I state it respectfully.

I attended a functional restorative program. I highly recommend one if there's one in your area. Simple ways to reduce pain are heat, ice, posture, working your own trigger points, and meditation. Light exercise and stretching are also good. It's positive that you can help yourself with walking. I find that to be the case on my lower body.

Have you tried alternative modalities? Myofacial release therapy helps me. Other people have tried reiki, cranial sacral therapy, ART, Alexander Technique, water therapy - to name a few. Different things work for different people. It's trial and error.

Mideybrow is dead on when she says that anxiety intensifies the pain. There are numerous books out there on the subject. At the program I attended, we were taught CBT to foster mindfulness and turn around negative thought patterns. I tend to ruminate on the pain and it helps me to a degree. I'll take any degrees I can get!

I suggest looking over the new posts for the new people. I posted an article that gives suggestions to the people around us who don't have chronic pain. The more information you have about this condition, the more control you have over the pain. Still, it's a tough problem to have and I'm so sorry you joined the boat. I hope you find relief soon.

Tink

Hi simply,

I am going to tell you what I tell everyone. Get this book:

http://www.triggerpointbook.com/

This web site has links to workshops for people suffering MPS. They appear to be in Louisville, Kentucky. I don't know where you are located, but I would also suggest finding a PT, doc or massage therapist who is knowledgeable and can understand your condition. It might be hard to find, but it can make all the difference.

Anyway, with the book, identify your major areas of pain and search for the trigger points. Maybe you can enlist your husband to help you. You can actually feel the trigger points and the lumps of clumped fascia. It might make him more understanding, and he could help reach the tough spots.

I would also recommend going for as much massage as you can afford. I would think it would have to help some.

Hello All! And thank you so much for the quick replies...I have to admit everytime someone relates to my pain in this way makes me tear up...so it seams no one in my immediate family understands...and truth be told I have given up...not that I cant pull myself out of this low right now it's just that I am literally tired...tired of doctors, tired of pills, tired of being tethered to a recliner/bed/medication...smh...Im sure you guys understand...

Mideyebrow--As I was shopping for my textbooks at my college I found a triggerpoint body map...I was REALLY impressed...and of all places...lol...I have located the ones that bother me and I am using a tennis ball relieve the pressure associated...mine are in my trap on my left side upper back there are more but that is the most serious one...I also have a serious tender point on my rib cage under my armpit....sometimes I can barely stand having clothes on in that area...Thank you so much :)

Tink--I have tried heat, ice, moist heat (can tell the difference...works better than like a heating pad), I have tried mental relaxation, meditation, and water therapy...so far the water therapy has worked the best! I will refer to your post to lead me in some other paths to help battle this condition...thank you very much hun...your right...this is tough and I think the reason for me is that I was an active mother of 4 and wife...full time student and a full time employee...I have watched my entire life change right before my eyes and I am not the same woman that I was a year ago...smh...I almost feel like I dont have a choice but to submit to the pain...oh well life goes on :)

chimercial--I will try the link and thank you for your support and advice!

Again thanks for the support it is really a relief that someone understands...not that I want anyone to feel as I do...I do feel better that there are others that understand...

I think most of us had that sense of validation when people here have said 'we know what it feels like', frequently after spending far too long thinking maybe we made it up or trying everything to explain how bad it feels to everyone else.

Tiring is the word, for sure! So many of us here were that 'super woman' who managed to pack so much into life. And frequently there is that sense of bemusement wondering 'what happened'? I feel like I blinked and my life fell apart.

Reading your posts I'm struck by a couple of things. One, your compensation claim isn't finished. It's fairly well known that people with an open claim frequently report higher pain scores. The reason is irrelevant, just know that it's likely your pain will stay 'active' whilst the claim is open.

And two. It sounds like a living nightmare, your situation with the medication. That 'seesaw' pattern to pain relief will most likely be making it so much harder to cope with the overall condition, because it is draining your very soul. That's how it can feel. You are aimng for a steady pain level, rather than all the peaks and troughs you'll be getting at the moment.

So you need decent pain relief. My perspective, would be to go for getting something you can take regularly rather than going for high doses and then no doses. The question is what. You're right, the mixes you're on should do the trick, but they're not at the right doses. You've got a pain pill and a muscle relaxant, this is frequently the magic combination for severe cases.

Has your doctor tried you on tramadol? That has a combined pain relief and muscle relaxant all in one pill.

Or switching to a more effective muscle relaxant, like baclofen or dantrolene?

And I wonder why you've been put straight onto the oxy / percocet route without trying one of the anti-depressants amytryptaline or nortryptaline. Either of those, taken on a regular basis, may give you a better 'cover' throughout the day. I think they can also be taken as well as the percocet.

http://www.painclinic.org/aboutpain... this is the best information on using medication for the pain. The whole site is very informative, starting off with looking at what type of pain you have to starting on the road to recovery and making and sustaining progress.

From your posts it looks like you have done a lot when it comes to managing the pain, but less so in working with the myofascial to get improvements (which then help the pain, etc etc). Have you looked into forms of therapy? What sorts of things appeal? You need to be able to use a slowly slowly approach to the physio but there are some gentle stretches on the 'pain clinic' site that may be of help.

If you're interested in self-treatment or just general tips it's worth buying all the tutorials (ebooks) at www.saveyourself.ca because it contains the most up to date evidence based information (even if it's written in humourous prose and not scholerly prose!).

You need to take charge of your programme of recovery (and you can recover, it's not a life sentence) and 'shop around' for practitioners who will help you, who you 'click' with. You may even want to switch to a different doctors. Look at what's in your reachable area and what you can afford to pay as well as what your insurance will pay for. Look for massage therapists, trigger point massagers / therapists, Bonnie Prudden therapists, John Barnes therapists, craniosacral therapists, rehab pilates (one to one, not group), just look back at 'jessiespostfor new people' for ideas.

Oh, and tell your husband whatever version of 'you're dead wrong' you feel appropriate! You cannot 'exercise' your way out of this, cannot 'suck it up' and get on with things (that's frequently a factor in it developing), or just 'pop a pill' and get back to normal. I know it's hard not to be the patient, hard to understand, and giving information like Tink suggested is a good start.

And that anxiety needs paying attention to. Not just with pills, but it needs to be brought into the open and help dealing with it. Books, practitioners, counsellors, complementary therapies, other forms of exercise that don't stress the area, trying to still do things that make you laugh and make you happy, all these are things that can help you cope with it all.

Wow pumpkin31...where do I begin...lol! Okay firs the other drugs that I have tried...I tried the eleval (amyitriptilene) and the gabapentin...both caused tremendous swelling to my lower extremities so I was taken off of those however I am again willing to try the gabapentin as that one I believe might make a difference if I can get over the edema...with that being said...I have not asked for specific medication from my pain doc mostly because I am so afraid of the stigma that is probable already there as far as medication seeking or addiction seeking behaviors...I have tried other things as well I have had loratab 7.5mg but they dont do nearly as much as the oxy 5mg.

I have tried the pt therapy but because I have frequent hypersensitivity to touch I was discharged by the PT...Im simply not ready yet because I my pain is not managed well at this time...so I do the tennis ball pressure reliever up against a wall when there are not any willing hands around the out...4 kids 1 husband...2, 4,6, 8, 10...hands...lol...I do get out some but I am not nearly as happy and "carefree" as I was...Im tethered like I said before...if not by my own pain levels and the need to pop pills...but by concerned family as soon as a "grimace" appears..."what's wrong" "let's go" ect ect ect...which I am glad to have the concern but sometimes that just not what I need...even if I am in pain...it doesnt mean I want to go home and sit in the house DAMN IT!...lol...I KNOW y'all understand...all types of things have been put on hold because of my injury...vacations...ect ect ect...it's draining to say the least...the TENS unit gives me relief while have it on...so I am currently looking into the spinal cord simulation implant device...I go through a set of electrodes in a day because I leave the device on for so long...as I said in my reply the best therapy that I have received is the water therapy...when I get into the pool and do my stretches..."ahhhhhhhh" lol...Im a little nervous about the acupuncture because Im not sure how my insurance will approach it...I use my medical insurance and have the workers comp people reimburse them...i have to get a stupid approval before any little thing which does spike my anxiety so I found a way to side step that somewhat...I understand what you are saying as far as the workers comp case...here in Maryland you stand before a commissioner and you give your acccount as well as the lawyer for the workers comp people...(I have an attorney...I had to get one because they tried to tell me I "should be better at 8 weeks"...yea ok...sure) so the commission ruled in favor of my case and ruled that I am at MMI (maximum medical improvement)...so the last phase is to figure percent disability and that is the final aspect but...they are in preliminary nego with my attorney...that in and of it's self is a journey...I still get 66.6% of my working wage from them but I always have to jump through hoops with documentation with my doctors getting the information to my attorney then the workers comp people getting it and cutting a check they have 30 to cut it every time out...smh...they know Im home...why is it that I have to go through the drama??? Anyway...back to my illness...the rain is murder on me...I though my grandmother and older people in general were exaggerating when they say I can feel the rain....hahaha...I can too at 36...smh...thank you for your kind words and I will put them to use!

Hypersensitive is my middle name. This is the main reason I started having craniosacral therapy, because it helped me heal without intense physical work. No way could I go to anyone for trigger point massage, myofascial release, all that stuff. The cranio has been massivly helpful both physically and mentally.

Any massage I do is self-massage, using the guide from the 'saveyourself' website and a little mix of oils I came up with (you'll find it if your go back in the posts a bit and look for an 'advice' post by maximuscle).

But reading that 'you don't ask your pain doc for pills because of the stigma and risk of accusation of addiction' is kinda interesting. Sort of the equivalent of chopping off an arm because you sprained your wrist and want to avoid it being in plaster.

Do you think it's worth talking to your pain doc about these fears and see if they can help you work through them and find consistent pain relief? Because your 'see-sawing' pain control will be making the pain worse, the anxiety higher, and mess with your head.

I have asked for an increase on several different occasions and that is why I went from percocet to loratab to oxy...with the oxy and the perc being the 5mg and the loratab being the 7.5. He gave me the lecture on :"spoiling my brain" and "long term if I keep increasing your dose you will have no where to go by the time you turn 40" and "tolerance takes years to achieve" I have voiced my concerns and the answer to my problems is "you will always be in pain"...I know he is a good pain doctor and I have tried many treatments as far as Im concerned, injections, tens unit, home remedies ect ect...I know what you are saying but you have to admit that's how alot of these pain places are...hyper vigilant to uncover the addict ...no doctor shopping no medication seeking behaviors...smh...I couldnt possibly really need a higher dose...and to add because my insurance requires an authorization for anything over 5mg (oxy or perc) I cant help to think that he just dosent feel like completing paper work for that...

I frequently forget how different our healthcare systems are between the UK and USA. Over here there's much less emphasis on that whole 'addiction' scenario than there is over with you. I'm lucky in that I've only had one stern warning about the diazepam, and that was only to use it sensibly because it's highly addictive.

Can I say 'your doctor's an idiot'?! To tell someone who's in severe pain they are always going to be in pain and to just get used to it...well, it beggars belief. You poor thing, no wonder you've been shaking your head so much.

There is so much evidence on the risk of addiction with strong opioids, and the general consensus is that where it is needed for severe pain there is very little risk of addiction. And those that do get addicted tend to have an 'addictive' history, be it alcohol or drugs. There are even 'risk assessments' you can do before being prescribed the pills. But to leave someone with inadequate pain relief and tell them there's no hope seems inhuman to me. Yes, your case is 'challenging', with the reactons to some of the meds you've tried, but it's certainly not hopeless!

So many of the people here talk about 'shopping around' for the right doctor, someone who will listen and work with you. Is that an option?

There is always hope! New treatments to try, old treatments to revisit, different combinations of medications, not to mention new medications being developed.

Yea...the idiot is pretty much where Im at with it...lol...but yea the addiction stigma is alive and well and I truthfully understand why....we have a previlent drug problem here and it is turning from street drugs to prescription...you can find whatever you need on the street now...it's crazy...but as far as me being addicted I have even gone days without my medication so I can prove to myself that it is not me that is addicted...I dont crave a high cause I really dont get "high" it cuts the pain so I can either get some rest or so I can brush my teeth...even leaning over the sink sends my back into spasms because of where my active trigger points are located...I am trying to get disibility through the government because no one is optimistic about my return to work at this time...

I have tried so many things it just so draining to be right back at square one everytime a new procedure or option is tried and it is like oh well I guess I will suffer...I have gotten my hopes up everytime with a new doctor or procedure only to be let down again ...I went through a serious depression...I was angry at the injury angry at my job for not being a safe enviroment I was mad at my family because they didnt understand how much I want to be my old self and I simply am not the same women and it has all happened within a year...I feel like I could have gotten hit by a cross town bus and got the same results...a cripple...angry and crippled...smh...but since I have found some people in my life that I had no idea that suffered with chronic pain and some of you good folks here I can at least vent...see how others cope...and know that it is not all in my head like some may think...thank you so much for your care and concern...it means alot