Muscles never rest

Hi everyone,

Im still having major problems with my muscles, the main areas that are affected are my shoulders and upper back although other muscles are involved.

During activity my muscles feel very tight and i feel that they are ripping though i have no clinical evidence of this. When at rest my muscles keep on working, they are very painful and the more i try to rest or go to sleep they go into some kind of spasm and contract. I would not describe this as cramping. This can go on for hours and hours and i am unable to fall sleep due to the pain and spasms. Obviously not getting much sleep i am exhausted but i also feel unwell in myself.

I really am at a loss as to where i go next. My doctor has done xrays on my spine but i dont think the problem is coming from there. My bloods in the recent past have come back normal.

Thanks

Christine

24 Replies

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  • I don't know what this is about, though it sounds a little like what happens to me if my electrolytes drop too low. More than anything I just wanted to tell you that I see your post. Does massage help? Or epsom salt bath, perhaps? In any case, it needs to be checked out. Sorry I can't be more help,

    Bat

  • I will have a look at elecrtrolytes ...nothing seems to help, the pain can be agonising, all i can do is wait until it calms down a little usually about 5 in the morning.

    Thanks

  • Have you talked to your GP about sending you off for proper physiotherapy? Especially with a bit of OA in your neck you need to concentrate on exercising the muscle groups to support your spine. You could also ask about trying a muscle relaxant like amytripliline?

  • I did go to physio but stopped because i was too exhausted to go, he said it was bad posture which i disagree with. My aunt was told her shoulder pain was due to bad psoture...she is now recovering from a shoulder op, it was rotary cuff.

    My breething muscles also seem to be affected which is another reason for not thinking its purely posture.

    Thanks

  • Hi,

    Your muscles could be over working trying to correct or support joints that are not functioning properly. I've been having some shoulder and neck issues plus a hip issue for my hip my physiology told me that when I am walking I am using my thigh muscles and not engaging my glutes (bum muscles) and I've been doing some exercises to strengthen then. For the lower back she has given me some core muscle strengthening exercises and also a simple exercise for the shoulders & neck all of which seem to be helping thus I would second Helix's advice and recommend Azabats suggestion of having a massage regularly (I go about once every six weeks - can't afford more regular ones) be sure to go to a good massage therapist who comes recommended if you can.

    All the best

    Ali

  • In the beginning i did think the muscle pain was due to having to support my spine but now i feel more is going on as my breethin muscles are affected.

    My daughter sent me for a massage at Christmas time and i struggled laying on the couch.

    I guess its finding what works and whats casuing it.

    Thanks

  • Hello Christine, you must be reading my mind! From the very early days of my disease when I didn't know as much about it as I do now I have always had terrible pain in the spaces between joints (tendons, muscels). I have RD in my shoulders and elbows....... so I also have pain that connects these two joints. Same with my knees and feet and my shoulders and neck. The link between my shoulders and neck have lead to severe pain leading up to the back of my neck on to the top of my head. This has only happened in the midst of severe flares. I presented myself in my Rheumy Ward with this pain in my head, and the rest of my body, so bad that it was thought I was having a brain spasim.

    I know now that when I have a bad flare that this is what happens to me, however my Rheumy nurse at every occasion asks me if I have felt/heard a snap in my head so to rule out a brain emergency. I know now too that this happens to me because I have ongoing pain in the muscels in my upper back and neck. I experience this on a daily basis when changing gears in my car......I feel a 'pull' in my shoulder blades!

    Christine, thanks for bring this subject up as it is something as I have said I experience daily but also know how when severe cause me and my Rheumy team great concern.

    Hope your well.

  • I feel that the pains worse when there is some kind of flare, although i am told i do not have RA. Today i feel like im getting flu again and have had days of terrible pain in all the areas you mentioned. I even get pain on my heel, i dont know what thats about.

    Did you find anything that helps tha pain and spasms.sorry for my ignorance but what does RD stand for.

    Thanks

  • It's what some call Rheumatiod Disease rather than a very broad label of arthritis.......its complicated....Did i hear your right? You don't have RD? Sounds very similar to me. Have you been tested? What did they say you had? In the last year I have developed this disease on my heels too, very strange. Please let me know more about what your Dr's say is wrong with you. No one is here to tell you what to do but I think you should push for a definate diagnoisis. Don't forget to get back to us......really hope you are feeling better soon, all the best luv. XX

  • They say i have OA and fibromyalgia..im not sure. Iv only seen a rheumy once who never looked at xrays and scans. I did have joint swelling which he said was not due to RA but did not say why i had swelling on most of my joints. The heel pain was really strange i was in bed and the pain started.

    What i dont understand is that i get flu symptoms quite often and have episodes of bruning hot yet my bloods do not show any imflamtion, i wonder if there is a type of athritis where imflamation comes and go and only shows up in bloods at the time of a flare.

    At my last doctors appointment my daughter asked what treatments were available for OA the reply was a hip replacement if and when i needed one even though id never been about my hips.

    Thanks

  • There are others on here who will be able to tell you more about OA and Fibro, I'm no help to you there but so much of what you are describing is exactly the same as I have. I'm what is called sero negative RD and my bloods don't show inflammation either and I'm murdered with the episodes of heat resulting in terrible sweats (I'm post menopause so it isn't the change). I'm at a loss as to what to say to you luv but I'm hoping others on here will offer you more information and advice.....my heart goes out to you. XX

  • Im post menapasue also...the hotness started about 18 months ago, i could no longer tolerate heat and light activity causes overheating.

    With seronegative RD does that mean that you dont have the RA factor and you do not have inflammation markers in your blood either.

    I think once you get a fibro diagnosis you they pretty much forget about you.

    When i had xrays and scans on my back they were not looked at by a specialist and iv never had xrays on any other joints.

    I really appreciate your help. it gives me the confidence to ask my doctor to investigate further.

    Thanks

  • Just reading the other replies Christine, has OA in your neck ever been discussed or confirmed? When mine is having a go my muscles get what the physio calls knots in them & it can take a week of manipulation & exercises at home to get them released to make them something like comfortable, particularly in bed or if I've not been sitting correctly whilst on my tablet or the pc. He also showed me the best position to type & it's not on my lap which I do tend to do! It's actually as my typing teacher taught me at school, sitting back in the chair with my back upright & feet flat to the ground. I'd been experiencing really dreadful headaches, not migraine like I know or have experienced prior to the menopause & my Rheumy suggested they could be cervicogenic headaches due to my cervical spondylosis & it was treated with amitriptyline (in this case used as a muscle relaxant) which my GP started off at 10mg a night & we've worked up to 50mg now but I'm due a pain med review & she did say we could increase it again if I started to have more problems, which I am.

    I think it would certainly be worth mentioning at your next appointment, your Rheumy should be able to determine from an examination but may wish to have further testing done to confirm.

  • Yes, iv confirmed OA , spondylitis in cervial down to lumber, confirmed with xray and mri.

    Some things not adding up like flu like symptoms and breething muscles affected.

    Some days i can hardly move and my movements are very slow because i am always in pain and the stiffness occurs even from sitting for a few minutes.

    Thanks

  • So are you receiving any treatment Christine, med or otherwise for your OA? If not that would make me think it's more towards the pain of your CS & LS causing your muscle problems. Stiffness from sitting would also indicate OA, I'm terrible when I try to rise from my chair, particularly last thing before I go to bed, I should mention I also have LS but my knees are also a problem, again OA. Have you been given any exercises to do & is your BMI in the right ball park for your age? It can help to do specific exercises for your needs, it helps with muscle tone & strength but it needs to be tailored to you. The same for what you call breathing muscles, they will need attention to as far as exercise goes, this is assuming you've not been given any to do of course. You will receive proper advice if you're referred to physio, starting off with gentle exercises & working up to to enable you to start strengthening your core, it's not something you could or would be able to go gung ho at. I don't really have the awful pain any more since having an exercise regime & being on amitriptyline & Butrans patches, it might be time to consider suitable pain relief if your Rheumy's not mentioned it. I'm due a review soon as some niggles aren't going so quickly any more & I'm on the strongest BuTrans patch so it's getting time to investigate my options.

    Feeling flu like would point to undermedicated RD, are you due a review any time soon?

  • Im taking gabapentin at the moment, nothing takes the pain iv described away. I dont have a rhumy as such, i had an appoinment last year, he diagnosed FIbro and never looked at my scans and xrays nor did he order any new ones or tests.

    When people say RD is that the same as RA because iv been not im negative for RA, and my bloods usually come back within normal ranges.

    The physio i had did not help, the muscles im describing are very deep set and i susspect it could be tendons.

    Thanks

  • Maybe it's not the correct med, my only knowledge of it was through my h who was prescribed it for neuropathy, what you're describing is quite different.

    I would also be questioning your GP if it would be an idea to be under a Rheumy for your OA, it sounds as though you'll just be left to fend for yourself otherwise & as it worsens you'll only have more pain & nobody keeping an eye on any damage which may be being caused.

    RD is something some us prefer to call RA as it's often misunderstood as OA, that's not to say that it's not as painful, we can both attest to that it's just that Rheumatoid Disease is helpful for people to understand it's not the same.

    Again, if you're OA problems are addressed so should your mobility problems ease.

  • I will try again with my doctor because regardless of the diagnosis its affecting the quality of my life daily. I was given gabaprntin i believe becasue of the fibro diagnosis.

    Thanks

  • As your primary he should be able to determine where or rather who you need to see. Obviously I've heard of fibromyalgia but never really researched it or the meds used not having it but I understand it's not pleasant to live with either & again maybe the gabapentin isn't right or the dose needs adjustment. If you were prescribed it some while ago if it was me I'd want a review anyway, particularly if it's not helping .

  • Yes i agree...it seems like one battle after another.

    Thanks for all your help

  • You're welcome Christine. Keep us updated won't you. x

  • I will and thanks again

  • Google Spastic Muscles...

    Sounds like it?

  • Will do thanks

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