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chronic myofascial pain

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:23 AM in Chronic Pain
Hiya! I am looking to connect with people who have chronic pain (100% of the time) who have tried everything so we can talk about what works best and stategies that help you cope. I have had mris and xrays and other blood test, etc... to rule out serious conditions and they have found nothing and the only thing I conclude is myofascial pain. Mine is pain on the upper right side of my upper back and shoulder neck area. It makes me want to pull my hair out. I hate having to wear tight clothes or even a bra for that matter. I start a new job next week and am desperate to get this under control before then...which is silly wishful thinking but if anyone has some good suggestions I will be your best friend forever. I am young 27 and slender and look perfectly fine on the outside. Inside I feel like a 90 year old woman. I am trying a yeast free diet for 2 weeks to see if it make a difference in the way i feel...if anyone has any feedback on that or another diet that has helped your pain feel free to comment away. Well, hope you all are enjoying Sunday Funday!! Love, JLO


  • Hi ya Jalo, I think we share some symptons.

    I have been dealing with upper right back pain for almost a year except mine is now spreading to my entire back and my right foot tingles and hurts. My only relief is laying down. I have had an mri which showed two mild disc bulges in the T area. I am at my wits end and feel like I am not getting any help. I have tried P/T which I think made it worse. I am taking an antidepressant(prisiq) that they thought would help with the pain but has not so far. The next step is a epidural. I have also tried massage, a tens unit, ultrasound therapy ect.. None of it has worked.

    Not much help am I. I could just scream!!!! I am so tired of being in pain and it is showing in my face.. I look tired and old. :''(
  • ">image I too have been prescribed Pristq, but my doctor told me he was giving it to me as an anti-anxiety med because I stay pretty jazzed up and can't even turn it off at night to sleep. Once I added this med to my regular HANDFUL of meds at night, it seemed to help slow down my thought processes so that I can go to sleep a bit easier.

    I have some similar symptoms as you do... my upper back has begun to give me nothing but hell for the past two months. I have problems in my lumbar area for which I had the scs implanted and now the problem has crawled up! It hurts mostly on the right side, but the left side gets it too, and it goes into my arms and makes my hands hurt. My doctor has suggested facet joint injections and I'm waiting on approval from my insurance. I also have been having unbelievable pain in my chest and arm joints which I believe is all connected. We'll have to see how it all plays out to come up with the right DX...

    Hope the two of you get a bit of relief and are able to get some get rest...
  • I have been on the pristqi (spelling) for about a week and so far it has done nothing for the pain and I also don't care for the way it makes me feel. My brain feels all foggy and I always have a dull headache. I feel totally spaced out all of the time and feel I shouldn't even be driving a car. I'm not sure I am going to continue taking it.

    The Doctor has me on Remeron for anxiety and I really like it but he through the pristiq in for pain and it's doing nothing for the pain.

    I'm so tired of all of this. I honestly don't know how much more I can take. 8}
  • I can totally relate to everything you've mentioned, including wearing clothes that are too tight. And when I say too tight, I mean even clothes that technically "fit" me, but have no "give" to them. I know this has everything to do with the myofascial pain, but it can be exasperating, especially when you need to dress appropriately for work or social activities.

    For me, clothes shopping has become a bit of an adventure. Always trying to fond things that don't look like sweats, but feel like them. If you really do some research, you can find things that work. I find that it is usually a bit more expensive when I find the clothes that work for me, but it is well worth it.

    I think it is also common for many of us to look "normal" to the rest of the world, even though we feel the way we do inside. I am beginning to understand how to deal with the people who comment on that sort of thing. I just let it slide off my back now, because I've learned that unless they've actually experienced what we feel, they will never understand.

    I just wanted to say hi, and let you know that I can truly appreciate how you feel. I hope things go well for you and that you can get back in the swing of things quickly and with as little frustration as possible. Take care and be well. Bye for now........ Mitzi
  • I didn't notice the Pristiq causing me to be foggy feeling... I already had some of that going on before starting it. It really has helped me with the anxiety issue, to some degree. I talked to my doctor about taking it twice a day or possibly increasing dosage because I still feel anxious. If I get around a crowd of people I get so nervous! When I go to volleyball games and football games to watch my daughter, I try to be invisible because I'm so afraid of someone talking to me and me not being able to talk like a normal human being. I find myself struggling to find the right words to say. I can see in my mind what I'm trying to say, but I can't find the right word to put with it! Very frustrating! I also have MANY headaches, almost every day.
    I have the same issue with clothes as you guys... It is so uncomfortable to have close fitting clothes on and whenever I HAVE to wear a bra (outside of the home), I take it off as soon as I possibly can. The seat belt in the car seems to be quite a problem too.
    Sorry my post is so long. I try to keep them short, but once I got started it just kept coming! You guys have a good day.
  • HAHA, I love it! Where do you go to get them? Do you have an online site I could check out? My pain was so bad today, yesterday I had a seizure! It was soo scary!! I feel like i am never getting better. :''(
  • OMG! I haven't ever heard of someone having a seizure from intense pain!">image That would be so scary! I hope that never happens to me. I have enough going on with me without heaping that on top of it... Did you go to be checked out by a doctor afterwards?
  • I have epilepsy, and have found that they can be caused for a number of reasons. A seizure is caused by electrical impules in the brain, eg A should go to B sould go to C. When someone has a seizure it misses B and the electrical impule oes into the brain (this is how my Dr explained it to me). In someone who is sensitive (predisposition???) this may happen more easily. I get them from lack of food, sleep, too much stress or the disinfectant used in some vet clinics. Personally, I feel that most people would faint long before having a seizure unless they have a seizure disorder.
  • There could be another explaination for what happned, or maybe it was an adverse reaction. If it happens again a trip to the ER may be the best thing to do, then they can do a CAT scan right away. They can also do EKG's. Good luck with the Dr, hopefully he'll be able to figure out what happened.
  • I have to hurry and leave as I have a doctors appt. in a little while, but I want to get some information about this and read everone's messages. From what "girl" described, it sounds like I have the same thing. It's a horrible pain and many times I can't even lift my right arm because of it. I can't wait to get back to this thread!
  • what symptoms do you have similar to mine? How did the doctor appt go??
  • hi, i have had pain for 10 years i am 30 y old male
    2 partial laminectomys in my low back a third was left alone
    2 years after surgery i felt a pop in my mid back and stabing pain since. mri show no problems but holy crap!!!
    pain 24/7 for last 10 years on pain meds for most of that time im so sick of em!!
    i used to be in top shape with pain no changes so i gave up working out
  • so what do you think it is you are suffering with? Myofascial pain or something else? I kind had the same thing happen...i remember a loud pop and stabbing pain too. have you ever tried to change your diet?
  • ~X( well, its nice to know that I am not alone anymore...not that I wish anyone should have this pain...I have been researching this MPS everyday for the last 4 mos. extensively just trying to understand what is going on with my body...some days are okay...(oh yeah, when people ask "how ya doing?"...I say okay...dont want to sound like I am whining or cause depression to spread like the flu) I hurt my back in a freak accident on my job,Fall 2006...had 2 doctors tell me that nothing was wrong...pain pills... and nothing is wrong...had doctors tell me that I had chronic pain and I was going to have to learn to live with it...2 bouts of pt (16 sessions each time)...more pain pills, muscle relaxers, 6 trigger point injections...4 more trigger point injections....and approx. 1 yr later...another 8 botox injections...but nothing is wrong!!!I am now searching for any help I can get...and your right about other peoples opinions...if you cant see it, it must not exist but it is a big monkey on my back!!!
  • My answer to how are you is "Fine" meaning
    f...ed up insecure, neurotic and emotional. That sums it all up. I want to get in a really warm bath and go under and stay there but for some reason i keep coming up for air. I have a disc protrusion C5 C6 mild spinal stenosis...major muscle spasms, neck, arm, front, back it keeps getting worse. Physio and exercise started something new, a cold blue numb arm thing.. add to the list. I have been diagnosed with chronic myofascial pain, have done about 5 sets of botox and it takes the edge off for a couple months. Have recently went to a pain clinic and had cervical epideural injections, sent me for a flip, no sedation. Injections of freezing into my steel muscles on my upper back and it actually made things worse! I have been researching trying to figure out what to do and I think this is fibromyalgia too. I'm too scared to entertain the surgery option. I have humps and lumps and bumps but have no idea where to find someone to help me!
  • There is an awesome book written by Devin Starlanyl called "Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual"; if you don't have it or haven't seen it, it is well worth reading.

    I was diagnosed with it a couple of years ago, but knew I'd had it for at least 15 years. Since then, I was diagnosed with enthesitis (inflammation where tendon attaches to bone), so now I never know which pain is which. But I DO relate to the tight clothing issue....I often can't even wear a bra because it feels as though I'm going to be strangled by it.

    Check out this book, as it covers every little thing that you can imagine, including awesome illustrations.

  • Hi to all of you, been reading this thread and I noticed Trater, you were taking Pristiq, I think I spelled that correctly, anyway, I've just been prescribed this medication also, along with my other meds, Neurontin, Wellbutrin, Xanax, Zanaflex, a fluid pill and BP pill for preventative measures - I had a mild stroke in 2001 in the thalamus and they never gave me a real diagnosis of what caused it, except perhaps "Silent Hypertension". However, it runs in my family also. My dad died of a major stroke at 67 years old after a few minor TIA's.

    Also, I've just been prescribed Opana ER for my back pain, and it has not helped me at all. This was the doctor's reasoning for adding the Pristiq. I told him several times I was getting no relief, and felt like it was bringing on panic attacks. The Xanax I take is very mild, and I have taken it for years. I've just been taking the Opana ER since January, but after about 6 hours, I start to sweat so bad, I know I have to take the 2nd dose. I know this sounds strange, but even though I'm getting no relief, after about an hour or so, the sweating stops, so it's almost like withdrawal side effects, doesn't it?

    I have a herniated disk at L4-5 and a mild bulge at L3-4, mild Scoliosis, DDD and my MRI's indicate same, as did the Discogram that hurt like h*ll. But I've been told I shouldn't be having this much pain. I get so frustrated when I'm told this. I don't have time to pretend my back hurts, I try to be "normal" because of the stroke and to have this pain on top of the pain from the stroke......I was diagnosed with "Thalamic Pain Syndrome"the pain is on the left side, runs down my lower back, hip and my legs feel numb and are weak. When I walk, my right calf starts to tighten up also and it hurts so bad to walk, sit or stand for any length of time.

    However, since the stroke affected me on the left side, doctors don't really know if it is the stroke or my back. I've tried to tell them I had back pain for years before my stroke, nothing like I'm having now, and I know the difference between the two types of pain. I even limp now when I walk, something I never did after my stroke. And, after my stroke, walking didn't bother me. Several times this month, the left side of my upper neck feels like I have a "crick" in it and this is something new to add to the list (lol).

    Like so many of you, even though I had a stroke, the back pain is making my life miserable and I never want to go anywhere. I feel the same way about wearing my bra and trying to find appropriate clothing also. I am having a terrible time trying to find clothes and I can't shop much due to the pain and the ability (or is it inability?) to walk.

    I am going to a new pain clinic on Monday, and they are all anethesiologists (sp?), so they may just want to do PT, which made me worse, Epidurals, facet injections, Selective Nerve Root injecitons, all of which I have been thru to no avail. The clinic I was attending at a university hospital closed when the doctor relocated. I continued seeing him, but he stopped prescribing medication and my neurologist just retired, so this neurologist I am seeing now (who my retired neurologist referred me) does not seem to care, nor listen to me and just tells me it's all the medication I'm taking and I'm on way too much.

    He doesn't seem to understand the "thalamic pain" thing too much or he would understand, most of those who share this horrific condition with me (a website support group) take more meds than I do and I have the lower lumbar problems on top of the pain I've been suffering with already since my stroke.

    I'm so sorry to make this so long, but I feel I need to tell about the stroke also, otherwise, it doesn't seem I'm telling everything. To look at me, you would never know I had a stroke, nor have these back problems because I try very hard to continue on with my life and be as "normal" as I can, but I feel this doctor doesn't believe the pain I'm really having. It is very confusing I know.

    Also, what time do you take the Pristiq? I suppose I need to see if there is any information on this med and post on the medication board about the Pristiq also.

    Thanks for taking the time to listen to me.

    Hoping all of you are doing much better.

  • I just wanted to add.....when I was describing my pain that runs down the left lower back, into my hip and down my leg, that is the back pain that hurts so bad.

    The stroke was in my right thalamus, so the pain syndrome affects my left arm, hand and fingers and the left side of my face feels numb, cold, much like the feeling you get after an injection at the dentist. That is why I take the Neurontin, it doesn't help my back pain, nothing does!

    I have a difficult time typing, trying to compose postings, and find the right words to explain my situation and tell anyone my story. And, I use to be a legal secretary. It is so frustrating and confusing ..... Hope you understand.


  • I found an article online that was being commented on by Devin S. Misconceptions and wrong diagnosis...
    I bought the book and wow, some really enlightening things in there. I hadn't even thought of fibro and no-one ever mentioned it that has treated me. I didn't know that there is two types of fibro secondary and primary. Secondary happening expecially after an injury to the neck. Not sure what to do though, the pain guy I have been seeing for injections is no help at all. He just said you don't have fibro although he does think it all stems from my neck but because I didn't jump out of the chair or scream when he touched my neck and traps, he put in his report that my pain is mild. I have a really high pain tolerance and let this guy do the cervical epideural steroid shots with no sedation and didn't scream or jump out of the chair but boy I cried and had to remember to breathe it hurt so much. I just looked up this doctor who is at a pain clinic doing treatments and giving diagnosis to people and he has a restricted liscence and has to be under the guidance of a qualified certified physician, has no specialties, and trained somewhere in the Caribbean. He is diagnosing??! Scary part is that he never did a physical examination except for touching my neck and telling me to squeeze his hand and looking in my eyes with a light. It wasn't until after the third set of cervical injections that he tried muscular freezing shots and said holy cow your muscles are rock solid. I don't know where to turn, my family doctor gave me a script to try Lyrica. I wish I could find someone that could guide me and tell me where to start and what to do and what not to do!
  • Hello all!

    I have been been living this battle for two years now and have so many different "pains" dealing with this dibilitating "invisible" illness.

    Many of you are dealing with the same issues. I can't tell you how sorry I am to know there is so much pain in the world, but I guess I don't feel so alone.

    Do any of you belong to or want to start a support group?

    My email addrss is lizzy764@yahoo.com. I love my family and all, but they just don't understand and it is getting real hard to cope alone.

    I look forward to hearing from you

    Elizabeth in Texas
  • I used to be a NonPrrofit Director and spent a tone of time at my desk. Now I am a substitute teacher and often struggle to find the words, all due to my pain and pain medicine - hang in there - look for me online and feel free to vent anytime :)
  • I like your definition to the word "fine"...that is so accurate...
    I wish I had the answers and could get rid of the pain...I started water therapy today...I am hoping to find relief...even if its just for a few days...I thought botox would be my miracle...but that didn't happen...I try to stay positive...hopefully someone will figure out how to keep the pain away without giving the zombie affect...I am constantly looking online for a new more natural drug or therapy to help...maybe I am looking in the wrong place...
    Anyway, hang in there!!! We are all "F I N E"!
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