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    Tightness, aching, burning neck & upper back pain, chronic and worsening
    An_245907 posted:
    I have just found this group, and hopefully will be able to find some suggestions for relief! I was diagnosed with fibro about 10 yrs ago, but it's really only been the last two yrs that it's become rather difficult to ignore. About 6 mos ago, my neck and upper back (between the shoulder blades) seem to have gone into a constant state of spasm & pain. It just keeps getting worse and worse, like someone has tied strings to my shoulders and keeps pulling them up higher and higher. I frequently find myself having to consciously force my shoulders back down from my ears. I have been suffering more and more "tension" headaches at the base of my skull. And when driving even for short periods, I frequently have to put counter pressure on the back of my neck by wrapping a hand around the back of my neck and pulling towards the front and down.

    I am currently taking ambien cr for my insomnia - after a lifetime of battling it, I finally went to a sleep specialist for help. I also went to an orthopedist, who gave me an rx for cyclobenzaprene for the muscle spasms, but this seems to accomplish little more than make me groggy. In fact, I still have the same bottle of pills from 6 mos ago! (90 tablets)

    I'm afraid that my trapezius muscle might be developing a sort of "muscle memory" and find even simple tasks like doing the dishes or folding laundry exhausting/painful. Any activity that requires lots of upper body movement causes dread!

    Should I see another doctor, and if so, what kind? Would massage therapy help? Sometimes I feel I would give my right leg for a massage from someone who understands this kind of muscle pain... The kind you get from a spa/resort type of place just doesn't work... I wind up feeling black and blue bruised up (never a bruise to be seen though!) are there any muscle relaxers or medications or treatments that are more frequently recommended for this kind of upper back/neck tightness and pain?

    I honestly can't remember the last time I did not have this constant, burning, aggravating, irritating, frustrating tightness and pain! It's driving me up the wall as its always there, 24 hrs a day (even wakes me up at night, despite my heating pad, awesome neck pillow - which I can't hope to fall asleep without lest I wake up in agony - and a tempurpedic mattress, which has also helped my overall aches and pains)

    fibrostressd responded:
    Have you went to a chiropractor or had an x-ray of your neck? I know when I was able to go to a chiropractor it helped with my migraines & tension headaches. Sometimes they can help with other issues. Call around & ask questions to see if they understand fibro.

    I know it is very frustrating when doing simple housework is literally a pain in the @$$ and everywhere else. I also see a counselor which helps with the emotional side of dealing with the pain from fibro. As for the medicine I don't know because I haven't found anything that works. However, I was told by my aunt that exercising in a pool helps. I am going to try it out.

    I pray you find some type of relief.
    Weezie6452 replied to fibrostressd's response:
    That kind of pain could be a symptom from a number of causes. I've had pain similar to yours in the past and for me it's a sign that my cervical disks need some attention, so I go to the physiatrist. He works with physical therapists, massage therapists (not the spa type) and others to get a good treatment plan going. I've had great response under his guidance.

    That pool exercising recommended by fibrostressd sounds good also. Is that one of those therapy pools with warmer water?
    birdie1120 responded:
    I have the same problem more in my neck area right by the shoulders. I get muscle spasms from tension at home fronm too much lifting or also from tensing my neck or just hunnching over. I have used muscle relaxers, but it does not help all the time. i am currently trying to get myself to call a pain specialist about the pain issues i have htere aand in my back and legs. I was wondering if there was relief as well for this.

    xperky responded:
    Yeah, it's like having a chronic stiff neck. Have you looked into myofascial pain syndrome? Does it fit you?

    I have one stretch someone told me, which helps my neck/shoulders. Looking straight ahead, bring your chin in and down and hold a few seconds. It stretches the back of the neck. This is good if I get hunched over the keyboard, etc.
    With Compassion,
    Ivy_Wood replied to xperky's response:
    I have heard others say the same. Mine must be a be different. I just feel like my body have the flu, sore all over. I have not felt the burning, as of yet. The stiffness yes every day. My body feels like I have just worked out hard. I am still checking on it. I am told I have FM. Just some of the things don't match up. Not sure if that means any thing. May be it is just really early in this.
    booch007 responded:
    Good Morning,

    I am so you...this is where I argue with my body the most. I used to think that a vodoo doll was made of me by an enemy and they were sticking pins in my shoulder blade area....!!!

    There are times i went to my neurologist and she would say , "your ears are down to your need release!"

    I am one of few here that use trigger poin therapy to release my muscles. It has taken years to develop the memory of release and relax for them, but it works so well.

    I use a book "FM and Chronic Myofascial Pain by; Dr Devin Starlanyl. Try it please. It is very enlightening to give you anatomy and cause and effect. What non medical things to do to help.

    I use massage frequently to release the areas between injections. It hurts to have the area touched but the movement of congestion to that zone but pays of in a day or two.

    Warming the muscles first and then working them is helpful.

    To the right under resources you will find our "toolbox", I wrote that post so long ago....and it is many pages, but what it is is all our tricks and tools in one spot. The things we found worked for us.

    As trigger point injections by my neurologist (primary) is my main therapy then I am on soma for relaxant, started it at night, now 3 times a day...Ultracet for the pain and savella for the chemistry behind it all. I have had 2 runs of botox to the muscles without response but I am grateful for the try......

    When I am as tight as you are, the massage helps alot. I tell her that it is upper body and do times I could throw up as IT was so bad when I walked in....(usually because I crossed a line somewhere...) BUT..I leave better then when I went in, and the drink alot**** of water to flush what is released from the muscles...I shower and add heat to help dilate vessels to also pick up debris and move it away....

    I have 2 people who do my massage well, my DH does it too in a pinch but often he just trigers a headache by stimulating them more the efflurage sweeping movements to milk the muscles.

    Look into the book please it is so powerful a guide, and look in the toolbox....EVERYONE has had something to add.

    Sleeping too maybe better with a memory foam mattress topper, this was the first pearl the board gave me when I joined....big difference. I still can't lay on my back though. I am L side lying always!

    Gee I wish you all the best I know this trapezius feeling so well, I even asked about removing it......"so what if I can't shrug my is a pain in the as*......literally" NO GO, no takers on that idea!

    All my best, Nancy B
    thenikki64 responded:
    I also see a physiatrist. I have been diagnosed with cervical dystonia, a chronic spasming of the paraspinal muscles, trapezius muscles. My right side is worse than my left. My physiatrist uses botox in 20 different trigger points to paralyze these muscles. I have had the botox twice now. For about 4 weeks after the injections, I have a definite flare up of the fibro. After that calms down, I am much less painful for about 6 months. I have found that the second botox treatment did not seem to work as well on my right neck as it was the first time, so I think we may have missed an important trigger point. My insurance (BCBS-federal) paid for the first treatment. For some reason, they have yet to pay for the second, and someone at my dr's office is supposed to be looking into that. If your insurance doesn't cover it, it will cost close to $3000.

    Ask about the botox, see what they say. I also find yoga very helpful, and swimming is one of the few exercises that makes me feel better the more I do it. Unfortunately I hate wearing swimsuits in public, but I get over it. I hope you find relief soon!
    Pam in Savannah
    thenikki64 replied to booch007's response:
    I replied to the original note as well. My first botox seemed to help a great deal, but this second round not so much. It will be interesting to see if I have it a third time. I wonder why it would quit working? Our bodies just keep us guessing! I recently had some massage therapy done, and I think it did help, so I plan to go regularly but am in a zone of multiple doctor appointments (docs are trying to tag me with rheumatoid arthritis now; tested before, negative, tested again yesterday, so we shall see--painful, swollen knucles, my dad has rheumatoid, ugh) so haven't had time to go again. Take care!
    Pam in Savannah
    birdie1120 replied to xperky's response:
    I have been told that i have myofacial pain from the doc. I stopped seeing the doc due to his lack of respect for my pain. He thought I was pill popping. I wwas not going to stand for that. I am going to make an appointment for a pain specialist after I get some others things taken care of that are as important. Sometimes i just wish i knew why me? Do you guys ever get that feeling? Like it will never end and when it does when will it start up again?

    thenikki64 replied to birdie1120's response:
    I think we've all been there! It does little good in my mind, so I often do my best to count my blessings. I have a loving (if not always understanding:)) family, a lovely work environment, and a decent cadre of docs who mostly try to coordinate their therapies (I do have to stay on top of that, though!).

    Here lately the fatigue has been my greatest challenge. I am working today and tomorrow, and this weekend will be busy (Father's Day, college graduation), so I have 'scheduled' true 'time off' on Saturday--nothing to do except rest and relax! I think it is important to find something that nurtures yourself, whether it is a bubble bath, a few hours with a good book, a walk with the dog or lunch with a friend, do something that recharges you.

    Hang in there. In the darkest hours, know we are here to vent to and understand and that you can make it through!
    Pam in Savannah
    teelady1 responded:
    I have a lot of neck and shoulder muscle tightness, too. I know all too well about the tense muscles even during sleep. I can't tell you how many times I wake up during the night and I'm all tensed up in neck and shoulder pain.

    I do get massages about twice a month and they have helped a lot. The frequency of the night-time muscle tightness has lessened.

    I understand your reservations about going to a spa place for a massage. I am fortunate to have a massage therapist who is knowledgeable about fibro - in fact her sister has fibro.

    Many chiropractors will also do massage. You might look into that.
    hillbillieswife responded:
    Hi--Reading your post felt like I was reading about myself.

    I had bad numbness in both feet and found out I had bad nerves, torsal tunnel. Had surgery to help which worked for a few months. During foot surgery recovery I woke up with a pain in my shoulder. Had and MRI done and found that I had spinal stenosis in C1-3, C4 and 5 were so bad that my neck was out of line by 1/4 inch and pressing on spinal cord causing headaches. Had neck surgery and was doing better but numbness progressed.Stenosis basically has made my body wiring all wrong.

    I can tell you that I found a massage therapist who worked wonders on my back and shoulders.The spasms were so bad that you could see the muscles bulging out of my back. I walked into her office barely able to walk and after the first visit I left feeling 50% better. I went every 2 weeks and what a difference it made for me. I haven't been now in about 6 months. She too was very knowledgeable about fibro. The girl I went to was so good she even showed my husband what to do incase of flare ups if needed.

    I still have a lot of burning in joints, fatigue and pain but it is bareable. I also has a wonderful doctor who cares and listens which has made all the difference in the world.

    Have you tried the full bed heating pad, I believe they are sold at Bed/Bath, I don't have one have heard they are great.

    I wish you all the best and hope all th post offer you some help.
    booch007 replied to thenikki64's response:

    I had two runs of Botox...a neurotoxin which "kills" the endplates of the muscles so conversation between them slows and in hopes of growing a newer more functioning endplates...

    In saying that (I hope I don't regret down the line I did that) as it made no difference for me. I got a terrible menningitis type headche after the first session and took off from work for the second , and side effects at all. Hmmm

    Asked if she used generic! I don't know why no reaction the second time and also no change in my issues.

    I don't think they give a third, I have not seen it in literature.

    I do get lidocaine trigger points every two weeks and they and massage are how I stay together and as high functionin gas I think* I am!

    Hoping that everyone could find the right doctor....the right meds and the right therapy that helps them.

    I have had many massages and not all have a positive reponse but I know the muscles need the congestion moved from them and I go anyway. I is what I do for ME!

    Well, hoping that you are in a better place, best of luck, Nancy B
    thenikki64 replied to booch007's response:
    Thanks, Nancy. My doc says I can have the botox every 6 months forever IF it is making a difference. I see him tomorrow, so I'll ask and will let him know the results were less than I had last time. I hope you are feeling good today!

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