Constant Muscle Pain, 10 years and counting, Undiagnosed

I've always had muscle pain but since 2006 when I was told I had mild scoliosis and went to see a Skeletal Massage has only gotten worse every year. Been me I'm already immune to pain killers so that's never been an option for me. Basically I am in pain 24/7 now...and all centered in upper body. LAst time I saw the doc it was cause I hadn't been able to sleep and he just said 'you need to sleep more' -_- Well helpful he was not. I've had blood tests but thats as far as its ever gone cause Doc's just don't seem to care or just dismiss it. Even the massage therapists or chiropractors I've seen over the years have no clue what could be causing it. They just think it's strange and don't get why I don't go red or bruise much during the sessions pfft.

I don't know what to do anymore...the muscle tension is from my head to my hips all inclusive and is stretching down my legs more and more. I'm tight constantly, the relief a massage provides no longer lasts to the next day, stretching and posture correction and all that jazz doesn't do anything for me, magnesium supplements, endep (muscle relaxant and drowsy med) doesn't work and I'm out of options....every year it gets worse, I get tighter faster, the pain increases and stretches to encompass more of my body until I'm sore head to toe...and there is no relief. I've been told I may have Upper Cross and Lower Cross Syndrome but thats easy to fix with posture changes'. Yeah no been there tried that, next.

I'm literally at a point where if I didn't wake up in pain, I probably would think I was dead or something.

Does anyone else have this?? Any tips on how to make the muscles relax cause I can't find a way to...and I have no answers and anything I've thought it may be I've had doc/massage people tell me it likely isn't cause I don't have all the symptoms...I'm at a loss.

15 Replies

  • Anyone suggested you're suffering from Fibromyalgia? Have you tried guided relaxation to systematically and consciously tense and relax the muscles?

  • Yeah that’s what one of the massage therapists suggested so I took it into the doc in my next visit and he dismissed it completely. Apparently ‘I don’t have all the symptoms to be fibromyalgia’. Once I get my stomach under management I’m going to ask this new doc what he thinks cause my last one didn’t seem to really care. But yeah so far they don’t think it is. I have tried anything that could possibly relax me both natural and medicine based. My problem seems to be once they tense, they won’t relax again or least not to the full extent. It’s, hard to explain ^^; sorry but yeah, undiagnosed cause I don’t seem to fit into any set category so far.

  • Have I got this correct ? Your pain is muscle tension you believe but with no know source ? It sounds confusing but here are all the usual questions. Have you had an MRI ? Have you been referred to a Pain Management Clinic ? Acupuncture ? I find a Tens machine invaluable for certain kinds of pain but not others. It's worth getting a cheap one to try out.

    Its sounds as if your pain has now established itself firmly in your pain pathways. Meditation particularly mindfulness might help you to learn to focus on what is actually happening rather than your body's memory map of past pain.

    I definately think the specialised pain management team woukd be most helpful here. I know the kind of pain you have as it's what I am experiencing at the moment but it's not my usual pain and I expect it to improve when the inflammation from my neck subsides.

    Sorry I can't be more help


  • I believe it is Yeah, because basically my muscles will tense up and then stay tense like they just won’t release. Even after a massage the moment I stand up again they will already be beginning to tighten by time I walk out the door ^^; and so far massages are my only relief even if temporary. Muscle relaxant meds stopped working for me so, just the norm now. But despite having it so long and approaching multiple docs they’ve always just dismissed it as ‘need more sleep’ or ‘just period pain’ so I stopped asking. I have a new doc that actually care so, once I sort out the biggest issue I’ll be asking him about the muscles.

    See that’s the thing though! I’ve never been for anything like that. I’ve had an MRI before but wasn’t specially for muscles, just a full body check, and never been referred to anything else. (And I won’t try acupuncture cause honestly needles scare me like crazy x’DD) A tens machine, haven’t heard of that but I shall look into and give a go! Willing to try anything for some relief.

    I have tried yoga and meditation and all the stretches they can think of. When docs failed I did my own research into possible things and how to manage it. And often new techniques work for a brief time and then stops working after a couple days. Haven’t found anything Long term that works and keeps working. Have to agree I think my muscles are almost so used to been tight that that’s just where they return to. Which is kind of a problem if that is the case.

    Thank you for your kind words and suggestions! They’re very much appreciated. Guess the beauty of having something so long is I’m used to it so it doesn’t impact me anymore but also does at same time.

    I hope your neck inflammation subsided and fast so you can find some relief ASAP. 😊


  • Hi Keira9653, sorry can't give you a magic cure. I have arthritis plus muscular pain the muscular pain is never ending and began following an hysterectomy in the late1980s. But like yourself it is getting worse, i have a massage bed and chair which means I can massage at anytime but no diagnoses has ever been reached even though I also have other problems that suggest the cause could be something else. I find creams rubbed on liberally give some relief, as do massage and painkillers but the pain is always there in the background. One doctor did suggest muscular weakness due to past injury but thats only one upper arm muscle. I now have an added back pain due to a fall which was put down to soft tissue damage, this was eight months ago. Seems those in pain just have to endure it or be so drugged up they cannot function outside of home. Good luck at trying to get a better solution, fortunately I do not have to work but do have a three bedroom house plus garden, to maintain and clean.

  • Hi Katie,

    I wish there was! Man if there was I’d be shouting and posting the cure all over the world for everyone with pain issues to use. One day, I still have hopes.

    Ah I’m sorry to hear you’ve got such pain...that sounds pretty bad and that’s a super long time to have had it too...I’m glad the massage bed and chair and creams can provide some relief to you, wish you had a stronger or least more effective something that would help more... Try to take it easy and don’t push yourself too much, making sure get enough rest is always important.

    I’ll keep looking and keep trying. In the end that is all there is to it. I’ve had it long enough I can function but as it worsens there are things I can do less off. I’m not working, not til I can get these health issues under management again...and unfortunately I can’t use the creams that usually help muscle relaxing as I have atopic eczema meaning, most if not all those creams burn my skin so much I can’t use. But I can afford a massage once a month even if the relief lasts only the day, it’s something to keep my going.

    Now if only life would take a step back and not make it harder with things like gardening and cleaning which all require muscle work Hey? ^^;

    Hang in there. And be sure if I find anything that starts giving relief, I’ll be posting it for everyone! I don’t know if you’ve tried a tablet called Endep? But it’s what I used for a while (til it stopped working for me lol just my luck). Basically it helps the muscles reset and relax at night and is drowsy so you can sleep. Just 10mg before bed did wonders for the time it worked. Could be something to ask the doc about? It could provide some relief for you. 😊

    Hang in there!


  • Have not tried that one (Endep). Sorry you can't use the creams Kei, but understand as I am limited on painkillers due to asthma. Did you know the same genetics that cause eczema also can be the cause of asthma and other bronchial illness. Just depends which ones you inherit. Most of my family have asthma like illness from my mums side and the arthritis and pain from my dads, sadly I have both but do get by just gets a little harder as time goes on. We all get really bad days so to speak, let me know when you find any new options to try :) :)

  • It's just one I found that helped, is a prescription only so will need to ask doc of course but could be worth a try!

    Heh of yeah I'm aware, I had pretty bad asthma as a kid, I grew out of it thankfully but eczema stuck around. I think due to the amount of antibiotics and meds I took growing up to find ways to manage the eczema, I'm semi immune to pain killers except the super strong stuff and even that doesn't last long. Which seems to be my curse, growing immune to things too fast. But, I got hope still! And everyone here is supportive which is so nice...since support here aside from my immediate household family hasn't been great so really, all the words mean a lot.

  • Sounds like a living hell.After 24 yrs i have only just been told that some people s metabolism dont break codeine down into morphine.Pain is truly one of the most misunderstood medical problems and i think it will remain like this for a ling time..I do sympathize with you completely,its so frustrating having to feel the pain and dealing with it is another nightmare. Keep ur chin up.

  • If you're one of those opiate-immune people, opioids may still work for you! Have you tried tramadol?

  • Ive tried everything,i'm sick as a dog from the slow release tramadol 100mg -300mg.I'm ok with the 50mg slow and instant release,i take it hoping it will work but 100mg injection into the buttocks is a great help to me.Drs dont understand how this works for me and doesnt make me sick.I know about 30mins after an injection i will be feeling some relief.Thats good enough for me

  • I was born with a scoliosis that is not in a place where it would be safe to correct it. One surgeon I was seeing for something else last year diplomatically said, "Your bodily asymmetry is so marked that I swear I'd know it was you if I saw you walking a quarter of a mile ahead of me". :)

    I don't get on well with pharmaceutical pain management (probably related to other aspects of the genetic condition that is responsible for the scoliosis etc.).

    For me, exercises every day manage to maintain my mobility. I strength train to maintain ligament and tendon stability to help my joints - this is not straightforward as I have ligament damage in both shoulders with bursitis and ACL/other problems with the knees. Nonetheless, I always find something that I can do. Overall, I've managed to avoid the de-conditioning that tends to accompany scoliosis and that can lead to its own difficulties.

    Sometimes, it can take a long time to resolve an issue but I'm fortunate in that physical therapy and exercise always work for me - and I know it doesn't for other people.

  • Mine was only mild so the idea was to correct it before it got bad. I still have it slightly but the skeletal and muscle massage was really helpful. And pharamceutical pain management doesn't work for me any way so, I just push on now.

    I'm really glad that you've found a way to manage and handle it though, that's great! And even if difficult, exercise and stretching is way better for you and your body than mamade medicines anyway ^-^ I hope it only gets better for you!

  • Hi Keira,

    I've been in pain for 12 years from neck and back issues and was diagnosed with fibromyalgia in the past year.

    In addition to a spinal MRI as I see has already been suggested I would make my way to a rheumatologist that understands and "believes" in fibromyalgia. There are many "algia's that can cause the pain you are describing and some are only diagnosed by exclusion.

    The rheumatologist will run blood tests that will be inclusive and exclusive and narrow things down based on the results.

    I have debilitating pain and I haven't found anything that works permanently as the body is remarkable at adapting. This is awesome when it build new capilaries and veins to oxygenate a blood starved heart

    but not when it finds a way to make sure pain gets to your brain!

    Good luck sweetie. I'll keep checking back to see what you come up with.


  • Try heat packs on the tight muscles? Also look into a fodmap diet. Endep at a very low dosage can help with sleep. This can be a big help because if you get a good nights sleep the struggles through the day aren’t quite as hard.

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