How painful is lupus myositis?


My GP suspects that I might have clotting issues to do with lupus and so has done some relevant blood tests, although he doesn't think I've suffered DVT.  However, as yet he has not ordered the tests for actually diagnosing lupus.  Personally, I suspect that I might have lupus myositis and/or Hughes Syndrome.  I am going to pursue getting a diagnosis one way or another, but can anyone tell me just how painful lupus myositis can be?  I have recently suffered such severe pain in my right thigh that made it impossible to weight-bear without excruciating pain. I couldn't turn over in bed without terrible pain and in fact any position I put my body in, even laying down flat has been horrendous for me.  It felt like someone was trying to break my thigh in two or my thigh had been run over by a lorry/truck.  After almost 2 weeks that pain has gone and now I have horrendous pain in my upper arms, can't lift things or do my hair without severe pain and my muscles feel weak.  I would be grateful for you experiences and thoughts regarding this.  I have had fibromyalgia for almost 20 years but this feels different and even more intense pain-wise.  (I also have hypothyroidism, chronic fatigue, ocular myasthenia gravis and dry eyes with blepharitis.) 

Is the pain as I describe it consistent with lupus myositis; can the pain be of lupus myositis be this bad?

Thank you in advance.


8 Replies

  • Hi fielder

    I have SLE and myosotis and APL ( Hughes syndrome ) . For me it is weakness in my arms and legs and I have a couple of attempts to get up from being seated. It is also very painful...if you look it up apparently that is not always the case. There is a blood test for diagnosis and the treatment is prednisolone. Other disease modifying drugs are added for lupus.

    Hope you do get a diagnosis soon, so that you can be treated....all the best



  • Hi Penelope-Mary,

    Thank you so much for your reply. I had read about the weakness associated with myositis - and my arms do feel weak - but it's really enlightening for me to know that someone who has been diagnosed suffers pain in association with the condition.

    Are your muscles also very tender to the touch? Mine feel like they've been kicked by someone wearing steel toed boots! My thigh has suddenly started hurting badly again and my arms still hurt but not as badly as they were.

    Does you pain fluctuate like this or did it before you got treatment?

    It's so frustrating that I thought that I had recovered with regard to my thigh and now I'm back in bed again as the pain is horrendous. Tbh I don't know how I could make it to see a specialist as I can't leave my bedroom, let alone the house.

    Many thanks,


  • Dear Fielder, it is so true that you have PAIN associated with weakness, I self doubted initially. I've been told twice that the CPK level is raised = myosotis and have had severe pain with it despite reading that pain is NOT commonly associated with the diagnosis.

    Yes my muscles are very tender to touch. And yes, it fluctuates. Believe it's true!

    If you are prescribed prednisolone it is safe to up the dose to relieve the symptoms . Obviously contact your GP or specialist at the same time, but s/he would endorse this action. ( has happened to me ) 1mg extra can only help you and if taken only for a couple of days , doesn't mean you are weaning off it , for weeks.

    It is not pleasant and I feel for you. I am in the middle of a flare myself, and I am taking every medication prescribed ..I'm still weak and sore but it passes. Rest and yet getting up and walk around ( in circles if need be) for 5 minutes every 20 relieves the pain and makes you feel relieved to be lying down again.

    I hope this has been helpful. It IS anecdotal but from way too much experience 😐. And please do speak to your 😷, I'm saying how I deal with it only. It's reasonably serious and does warrant expert advice .

    With you all the way





  • Hi Penelope-Mary,

    You’ve given me the extra courage I need to pursue this - thank you. (I mean why wouldn’t some people with myositis experience pain like you do, what with CPK seeping from their muscles into their blood stream?) I only suspect that I have lupus myositis and possibly Hughes Syndrome, so, sadly, I am only at the very start of trying to get a diagnosis and I'm dreading that it might be an uphill struggle, i.e. especially if I turn out to be sero-negative :(

    Do you get livedo reticularis is at all? I get it on my right knee up to where the pain in my right thigh starts; never experienced this at all before this leg pain started.

    With regard to treatment, I have another medical condition called Ocular Myasthenia Gravis and the treatment for that is immune-suppression, usually starting with prednisolone and then adding azathioprine into the mix. I refused treatment for my OMG because I didn’t want to risk any bad side effects from the drugs (and just put up with the double vision and droopy eyelids the condition gives me) but I’m now thinking that I might end up consenting to taking pred for my eyes to see if it kills 'two birds with one stone', so to speak. Thank you for the tip about pred dosage; I shall bear it in mind for any flaring of my symptoms in the future.

    I’m so sorry to hear that you’re in a middle of a flare atm; I do hope you get out of it and feel better asap.

    As I’m currently bedridden with my thigh pain, I think I’m going to have to write to my GP re getting myself investigated.

    Thank you so much for your help and support. (I’ve taken your advice and started getting up every 20 mins to slowly walk from my bed across the landing to the bathroom and back and I think it’s helping.)

    Fielder Xxx

  • Hello Fielder, I'm wondering how you are today, has bed rest helped you ?

    Hoping you have your GP appointment soon. Has the thigh pain sorted to ease?

    Yes I do have livedo reticularis, palmer variation I think. It occurs with the start of a flare. Are you on warfarin due to APL syndrome?

    Thinking take the prednisolone as have a few reasons to 😧.




  • Hi Penelope-Mary,

    I haven't been able to get through on the phone for a GP appointment...everyone wanting an appointment is told to phone in at 8 a.m., and I had no luck yesterday, despite using speed dialling. I'm going to write a note to the duty doctor for my partner to take round to the surgery.

    Resting hasn't helped me much if at all tbh. I remembered that I had some capsicum cream in my medicine box, which is used for nerve pain and put some of that on the affected area late last night and then again this morning; it's helping to dull the intensity of the pain a bit. (I've had stomach issues, i.e. experienced a recent gallstone/gallbladder like attack, which, although I know I have gallstones, I now suspect might instead have been 'stomach angina' associated with Hughes Syndrome, so I am frightened to take oral pain killers.)

    I've not been diagnosed with either lupus or Hughes/APS, so I'm not on warfarin (or immuno-suppressants). I have ocular myasthenia gravis though for which I was offered prednisolone, but declined to take it for that condition; however, I may contact my neuro-ophthalmologist and ask to take up his offer after case it might get rid of my thigh pain. If I could get out of bed and travel I would be booking a private appointment to see a good rheumatologist for their advice, but can't do that atm; it's so frustrating :(

    I don't have the palmer version...had a look at some photos on the net and I've not experienced anything like that on my hands or feet...but do get intermittent and transient livedo reticularis on my right knee, which has only occurred since my thigh pain started and tends to happen when I stand up from lying down. For years now I've had heat/light sensitivity problems with my skin the summer I come out in purple itchy lumps on the backs of my hands on and around the knuckles. I just used to put up with it not realising that it could indicate something more serious.

    I am on 50mcg of levothyroxine a day for auto-immune hypothyroidism (high TPO antibodies). I was reading that levothyroxine can cause lupus-like symptoms or exacerbate existing lupus. I am tempted to stop or reduce the levo I take.

    Sorry, forgive me, I seem to have written quite an 'essay' here!

    How are you? I do hope your flare has subsided. Xxx

  • Hello Fielder

    I'm sorry , I came across your posting by chance, normally there is an email alert....😧.

    I wonder how you are? Whether you did manage to be seen by a doctor?

    I use a capsicum patch on my lower back for spinal canal stenosis : you know that you are in pain if the burning 🔥 feels better than the pain 😳.

    I understand what you mean by resting not relieving the pain, if you have joint or muscle issues..the pain worsens with inactivity, though same with too much exertion as well...

    Have you seen your neuro-ophthalmologist again? There could be a link as you have myasthenia gravis I do hope you have been seen again and maybe you have started on prednisolone .

    Also you mentioned the side effects of levothyroxine imitating systemic lupus , I would certainly TRY to see the prescribing doctor to discuss that.

    You poor thing, and I'm so sorry I didn't know to reply to you, I do hope you have been seen or at least are feeling a little better.

    Hugs Fielder



  • Hi Penelope :)

    Thanks for enquiring how I got on.

    In the end my husband took a letter round to my GP's as I felt it was all too much to relay my story in full over the phone to the practice nurse. A locum GP was sent out to see me. And, to cut a long story short, the locum ordered some blood tests, which the community nurse had to come to my house to take blood for. All the blood tests came back negative; lupus anticoagulant was done and ESR, D-dimer, full blood count etc., but no antibody testing. I had to phone the blood test results line for a receptionist/clerk to tell me the results of those tests....And that was it - as far as my GP is concerned, the blood tests were ok, it's not DVT, and there's no concern whatsoever that I'm still laid up in bed with thigh pain. It's just been left up to me to contact them again to pursue the matter - no follow up... But what do I expect in this day and age, Dr Finlay?! (I need to get real!)

    I am going to get some blood tests done privately, e.g. ANA, CRK etc. Thankfully, my leg is somewhat better, but not enough for me to go downstairs from my bedroom and resume a relatively normal life again. Once the blood tests are done I shall hopefully walk - rather than hobble! - round to my GP's and ask for a referral to a specialist.

    I don't see my neuro-ophthalmologist until August. I will tell him about what's happened, but maybe by that time I might have more of an idea what's going through the blood tests I'm ordering. As it stands atm I don't know whether it would be best to ask to see a rheumatologist, an endocrinologist (what with my hypothyroidism) or an immunologist.

    How are you? Has your flare subsided now? I do hope so.

    Kindest wishes,

    Fielder Xxx

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