lupus and upperback/sore spine???

Hi all,so many questions of late;(does anybody suffer extremly tight and stiff/sore upper back (trapezius)muscles /tendons ,where it feels like all the tendons are knotting around eachother and feel like they could snap???its driving me insane as i can wake up like ive run a marathon,also...........theer are extremly tender points down my spine another issue ???heat and massage help but massage isnt an option financially,keep well guys brave;)

30 Replies

  • What a coincidence! I've been having a flare up of the usual lupus symptoms over the past few days, & then today my back muscles have gone into spasm & I can't stand up straight. It certainly feels like it's got to be linked in some way. It will be interesting to hear what other answers you get. Hope you get some relief soon brave. X

  • wow!!!! as much as I sympathise with you both, I have to admit that it is a relief to read that someone has the same symptoms and pain as I do. I did wonder if it was just a case of my body becoming older, or the fact that over the past 2 years or so I have gasined an awful lot of weight.

    I am in constant pain in my lumbar spine, 24/7. It is mind numbingly painful and sometimes hurts so much that i cannot bear to move. my spine cracks and sometimes it goes into spasm and so I have to sit or lay down until it releases again.

    What pain relief are either of you on? or what steps or advise have you taken in order to get some support or help

    I wish you both a pain free day xxx

  • my doctor prescribed Tramadol, it is ok but it can make u quite sleepy

  • Yep, same here. I was wondering at first if it had anything to do with my back op I had a year ago. But they reassured me that all that was ok. It never stays in the same place and I have days without it (thankfully)

    Stay positive and take care


  • I have had this pain in my back for months now, like between my shoulder blades and it feels all tight and so sore. I am always pushing my shoulders back to try and click it. Sometimes it clicks which providew temporary relief but it almost always sore to the point it hurts to hold my head up. I also get pain in neck muscles really badly. Unfortunately I have found nothing that relieves the pain. I am only on codiene atm though these are no longer helping any of mynpain. Hope you get some relief soon xxx

  • Snap I get this right in the middle of the shoulder blades and I get clunking under my knee cap with sore ankle like it wants to give do u have any of these

  • Hi all ,thankyou for responding,its good to know were not alone on this one ,its really getting me down and now im wandering if the low mood is taking over ?tried a swim this it feels like my whole upper back is burning and super sore ,cant lie down flat ,cant sit cant do much really;( so depresssing,i feel like i need to get inside my tendons and muscles and give them a really good rub to releive this pain !hope we come up with a solution ???keep well gys ,brave;)

  • I have similar symptoms. I find hot bath/hot water bottle helps. I have had physio but not sure whether it has helped as it normally hurts more just after. Physio suggested some sort of botox injection to relax muscles etc but once again it is a matter of funds. Take care, Jax.

  • You poor thing. I had pain at the top of my shoulders and between my shoulder blades for 7 yrs. Had an MRI scan and ended up having a disc out at the bottom of my neck. Now I'm in constant pain from the disc immediately below where they operated. Hot water bottle is useful for muscle spasm, also Voltarol gel. If its a trapped nerve, nothing will help. x x

  • I guess that with lupus affecting many joints it can start up anywhere, even though it is usually mainly in the smaller joints. I also had a back spasm last week which was very painful for four or five days, and have even had lupus pain in the chest wall quite regularly. Problem is how do we tell what is lupus related and what is something on it's own??? Seems we get more than most. My old hospital physio told me that Backs can always get a knock on effect if we are not walking quite right because of problems with ankle, knee or foot joints or pain, so it is really hard to put things right and carry on doing things if we are not walking or weight bearing in the correct way to start with. She said this is often the cause of backs going into spasm or "knotting". Having tried months of physio years ago I was eventually sent on a back core stability course class, which is based on actually moving and walking the proper way and strengthening the back and it worked brilliantly until I got complacent and neglected the exercises. As soon as my back gets out of spasm (cannot walk at all during this as it is so painful) and I am reasonably able to do so, I do the exercises, as I have discovered that without realising it, I quickly slip back into slouching poor posture or moving unevenly because of pain etc when both sitting and walking and then the back problems start again. The lupus just adds to it even more with all the added joint pains elsewhere which seems to set it off. M&S produced a fabulous small book about backs around six years ago in their stores and it had all the same exercises in it that I was given. Unfortunately they discontinued it - drat!!! I think some physio departments still run back remedy classes in various areas for people that suffer with their backs generally. Trouble is we have to feel we have the strength to even attend on some days when things are bad. Once you feel a bit better, might be worth making enquiries though. Hope it starts to improve soon and the "knotting" eases for you.

  • Yep I think it's when we r not walking right the discs between the shoulder blades are all over the show my ankle whent 9 weeks ago doc said it was sprain then whent into me knee clunking then into mid back was free of it for 2 years now its back again

  • Thankfully I don't have this problem - but do have a couple of suggestions. I go to a gentle yoga class each week which I feel just keeps all my joints moving and the leader always makes sure that you only do what you can. I certainly feel stiffer if I don't go. The other thing is, this website might help with strategies on living with pain its got all sorts of self help suggestions.

  • Do you have fibromyalgia sometimes we think it is the lupus but get the points for fibromyalgia checked. Mine is dreadful at the moment. A very painful condition. Xx

  • thankyou all ,great info ,GillyG........i do have fibromyalgia as an overlap of lupus ,im sure this is the one causing the most problems at the moment???its not the joints giving the most problem but the overwhelming stiffness and sorness actually in my muscle tissues ,like they have been ripped apart and trying to heal,but cant it doesnt ease as the day goes on it continues to be extremly sore ,its so tender and burns deep inside the muscle fibres,if i rest i stiffen up if i move and try to exercise im in agony ,cant sit for long and only lie down at night for sleep ,which i wake continually as im in pain ,im a hairdresser which is also a problem and have had to cut my work (which means my wage)its very distressing and now im suffering low mood ,my body doesnt tolerate medicine well ,painkillers upset my stomache but have to take them ,im looking into natural ways to ease pain ,however havent got the finances for trial and error.Im not sure what to suggest to my G.P ??physio?chiropractor?who knows?im so sore that i cant imagine being pulled around;( i get my hubby to rub my back it seems to releive it a little but then the next day im even more sore than before ,its as if the muscle tissue is inflammed and tender so any physical effect on this makes it worse ,just cant win!I think seretonin is our natural painkiller??for me exercise used to boost my seretonin,but now i cant exercise ,i wander if seretonin enhancing meds would help???thankyou for letting me rant on ,happy monday guys :)brave

  • Rant away "Brave" this is a great place to do it, and so much help too. xxx :-)

  • I cannot believe what I have just read. Thirty years ago I went to the hospital with stiff neck,extremely painful muscle in my shoulder, whenever I carried anything or used my arm it felt like I had torn the muscle, it was burning and painful. The pain went into my shoulder blade, it felt like hot oil trickling down my shoulder blade. I had mri scans, camera in my shoulder,physio and numerous other tests. I had a cortisone injection and even went private to have acupuncture. I was sporty and had to give it all up, when I started to drive the pain became unbearable. I am now 45 and have suffered as long as I can remember.

    After years of backwards and forwards seeing different specialists I was told nothing could be found. I gave up.

    10 years ago I was diagnosed with discoid lupus.All the info on this said it was purely a skin condition. As the years went by the pains I already had seemed to be spreading down my back,in my knees, my heel got so bad I couldn't walk on it and the most recent is a pain in the muscle in the top of my leg, inside my foot and the muscle in the top of my arm. I also suffer from brain fog, loss of concentration and depression.

    It was after joining this site and a call to Lupus uk that I found out that other discoid lupus sufferers had the same symptoms as me. If I had known this I would have gone back to my doctor years ago. I thought it was just me and it was something I just had to live with.

    I was referred to a rheumatologist who was confused by my ailments. On one of my visits to my dermie I was in so much pain that she told me about a professor who was very interested in Lupus.

    I have now seen him and for the first time ever I came away happy. This doctor listened to me and has arranged a scan, and other tests.

    My advice is not to give up like I did. I am now on medication and feel better, I still have all the problems but knowing it is not all in my head is such a comfort.

    Good luck to everyone it seems most of us have had an struggle to get a diagnosis.

  • I have Discord Lupus too as well as SLE and Arthritis so I feel all your pains??!! ;) And It's great when they listen isn't it. I hope you have the help you need now. Keep smiling xx

  • Hi Carrie67 can u give me the name of the Professor interested in Lupus pls as really want to help my son.

  • I too have the same problem with my back! Know how you feel!

  • Yep. I suffer from a very stiff upper back and losing some of the mobility in my shoulders and neck. I have to rotate and move my head side to side until the bones crack in my neck. This has now become a habit. Co- Dydramol take the edge off of the pain and offer some relief.

  • Hi guys hope your all feeling a bit better today. I also have this problem. I have fractured my back twice which has left me with nerve damage and I have been on solpadol for over 20 years however it no longer touches the pain and I am now on morphine, diclafenac and solpadol of a day and amatriptyline of a night. In recent years I have noticed my back pain is worse whilst in a flare and so I am hoping my new rhymie will accept it might be lupus/fibro related so we can try something else. Currently I have no reliefs from pain from top to bottom and right across my back. Most of the time it feels like its muscular and nerve related but sometimes it feels like my ribs are broken. Good luck everyone on getting some relief. Ex

  • Guys ....what feedback ,im so sorry that a lot of us suffer like this ,its just not fair.Has anyone tried low dose antidepressants?for pain releif????thanks brave

  • Hi

    I was prescribed citalopram 3 years ago because I was so down in the dumps. I don't know whether they help with the pain or whether you can just cope with it better. I came off them and all my pains seemed to be worse. I am now on 20mg a day and will stay on them as long as I am allowed. For me they have helped.

  • thankyou for your advice ,it helps alot :)

  • new to this leaving comments but reading them helps as to what others are feeling with regard to their sle i get the pain in my lower back thighs and calfs in the morning and its feels like walking upstairs i have two wet pair of jeans on since having the lupus in my kidneys , stiff shoulders, oh and does anyone get itchy shins where you want to scratch and scratch but that just makes it worse.anyone else on amlodipine bisoprolo candesartin carbamazepine cellcept dihydrocodine furosemide ibuprofen levothryoxine mometasone parcetamol blue and brown inhalers solifenacin, warfarin anyone on 15mg of this dyhydrocodeine,, can you get a massage on the NHS just glad i dont need to pay for this lot, i actually wonder if doctors read these blogs from patients,



  • i get what feels almost like severe wind-a knotting around my shoulder blades and I have to lie down on my stomach and my husband has to massage the painful area until it eases off. Then to try and keep it away as its like cramp and can fall back into the knot again I take 2mg of diaziapam and 2 dihydrocodeine. I have had MCTD/Lupus/Sjorgens and arthritis and have had a full blown stroke - this all started with the stroke in 1988 and so have had the full gambit of symptoms. I think to be honest I have had symptoms of lupus even as a child when i suffered raynaulds and when pregnant had two prem babies. I am 62 and still kicking

  • do you keep kicking?????youre an inspiration;)im 38yr old mum of a 9yr old daughter ,feel like an 88yr old ,my symptoms began in childhood ,then progressed over the years,by 20 it really kicked off with over 12months of horrid symptoms (a very long flare)but obviously didnt know this was lupus and was told of ,M.E!!!!and to go live with it.Over the years ive managed with peaks and troughs,had a nasty flare and then fell pregnant,during pregnancy my lymph glands were like golf balls and i struggled ,had a very monitord pregnancy because of a certain antibody i carried which meant at any point my body could reject the baby (i now find out this antibody is connected to autoimmune disesase,to cut a long story short.....sjogrens was diagnosed ,followed by fibro,followed by mctd,and now lupus,life has changed so much in a short space of time,and getting worse each day ,when will this flare end?or is this a flare i ask?or just persistant lupus symptoms?and i should expect flares on top of this?im struggling with the neurological symptoms that seem to be getting worse ,it doesnt help that i watched my mum suffer horrid autoimmune disease M.S and die very young at 56yrs old:(i think my point is????how do we keep kicking ???as when i try to kick i end up bed ridden with sore lymph glands and an array of even worse symptoms ,however i feel like im letting this disease eat me alive ,lost in a very lonely world ,and feel totaly out of control ,thankyou for listening (i didnt really give you a choice though .lol;)im ana expert ranter ,

  • Rant away Brave, I think a good old rant every now & again is the only thing that makes me feel relatively 'human', even if my rants don't always make sense lol ;0)

  • Thankyou ;)

  • Oh this is interesting old post! Will have t read it all.. Seen as though recently posted something similar!!

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