Muscle weakness, yopathy or myositis-like symptoms?

Hi

I am just starting on the diagnostic roller coaster but i am convinced i have had autoimmune symptoms for many years. With regards to posdible Sjogrens Syndrome i have had dry eye, mouth, vagina, skin, ear canals, eustachian tubes, nose, sinus etc for as long as i can remember. Definitely since mid teens and i am now 43.

8 months ago i had another symptom flare but it was more severe than previously, with significant muscle weakness, such that i couldnt lift my arms hardly, and was very short of breath just walking through my house let alone dealing with stairs. It was severe for about 6 to 8 weeks then very slowly eased but even now remains mild to moderate (fluctuates).

I have read about myositis like symptoms with Sjogrens. However apart from once having an ANA of 1:80 at the time of the flare, the ONLY other sign in my blood of anythj ng being wrong was a very high CK 3 weeks ago of 700 or so.

I have a face and chest rash but otherwise nothing major. I have joi nt aches and occasional muscle aches but otherwise pain is ok. Mostly fatigue, headaches, dryness and weakness.

My rheumy is flummoxed and has ordered yet more bloods, is planning an MRI and at a guess a muscle biopsy will be next.

Has anyone had myositis or myopathy with sjogrens??

11 Replies

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  • Hello Jar1973!

    Although I cannot address your myositis or myopathy concerns directly I can say that for a condition such as Sjögren's Syndrome there seems to be many layers of symptoms which can be experienced.

    From my observation there are several problems in making a diagnosis of Sjögrens Syndrome (and other autoimmune conditions):

    1). The research is still evolving in Sjögren's and what research has been done has possibly been more centred on the exocrine failure component than on other symptom areas which frequently accompanies S.S.

    2). There are so few 'true' experts in this condition for patients to consult with

    3). There are virtually no specific or targeted tests (at this point) to diagnose the condition

    4). Many people remain seronegative even years into exhibiting symptoms. This makes these 'less than expert doctors' believe that nothing is amiss.

    Just a few thoughts. Gotta go!

    Megan

  • Hi Megan

    Thanks for replying. You are absolutely right on all counts!

    Cheers Jodi

  • I have muscle weakness in my arms and legs - although I notice it more in my arms. In my case it isn't Myositis because my nerve conduction studies were entirely normal. I have a diagnosis of Sjogren's from +ANA and lip biopsy which was 100% positive. Not sure that it's primary or not as have a previous diagnosis of RA - which was probably actually seronegative Sjogren's. Also I'm being tested for Scleroderma now.

    Sjogren's is a very much more complex disease than many rheumatologists understand - I've been seen and treated by four or five and only one of them has focussed properly on the neuro aspects of this disease. My second and current neurologist seems to know more than the rheumies, as does my oral consultant and my optician.

  • Hi Twitchtoes

    Yes i am seeing more and more comments by specialists with a special interest in Sjogrens that many doctors think it is just about dryness, when it is so much more than that.

    I had a new realisation or discovery today. I have had episodes o articularly at the end of the day where i feel weaker, headachy, and slightly shaky as if there is a tiny tremor in my muscles. My face and chest also flushes.

    Today it occurred to me to take my temp and orally it was 37.3. I had had some sun exposure, probably walked for 7 minutes twice between train stop and hosp for kids appoints. Now i realise i have been having mild fevers that i have read so much about. I also noticed that where i got a bit sunburnt back in sept, which has seemed to flare when unwell along with face and neck, is probably part of a mild photosensitivity!

    Slow discoveries seem to be par for the course!

    I am sorry to hear that one of your new discoveries may be scleroderma. It is heartbreaking to hear the long list of conditions some have to manage.

    Thanks for taking the time to share with me and listen. You, along with many others here, are such treasures!

    Xx

  • Awww it's a relief to have others with same disease to share with isn't it? X

  • YESSSS!

  • I too have muscle aches and pains . The main problem areas are legs, hips ,hands arms and shoulders....basically all of me! I have problems walking up slopes / hills due to the pain etc.I'm going to ask for some medication to help cope with this next appointment at rheumy. I also get pins and needles / numbness in my right foot. I am primary sjorgens.

  • Hi 25clai

    Managing pain must be awful. I am glad so far at least that pain isnt a major issue for me, except occasional achiness or sharp shooting pains. I get a kling sensation in hands d feet sometimes.

    I think there is so much more to sjogrens than just sicca symptoms but it is often under recognized. Thanks for sharing xx

  • I too struggle to go up slopes/ hills ( our driveway) more so than stairs. I often get numb hands , tingly feet snd electric shocks in 2( places but 2 nerve studies failed to show anything up. My feet burn & my legs ache, hips burn too of & on but my neck, back, shoulders, r knee, ankles where my toes join my feet, jaw & thumbs ache continually. My arms feel like lumps of lead, gave up on pegging washing out & using a hairdryer 20 months ago. But exhaustion, rash's. sweating, dry eyes, mouth & change in taste of food the worst

  • Hi, although I'm from the US, sjogren's doesn't seem to differentiate country origin. ;). I was diagnosed with sjogren's 23 years ago while pregnant with my second son. He was born with congenital complete heart block which they determined was because of the antibodies associated with sjogren's. I had been complaining for years prior about sudden weight loss, hair falling out, butterfly rash, discoid rash, stomach problems, dry eyes, etc., but it took seeing an OB specialist to diagnose my son's life-threatening heart condition to find a diagnosis for myself. I mostly have issues with my eyes, joints and stomach these days. However, the year after my son was born I woke one day with an entirely new symptom - "exercise intolerance." Sitting still I'm fine, walk up a flight of stairs and my thighs suddenly scream in pain and feel like jell-o afterward; holding up a blow dryer fatigues my arm; singing hurts my throat; chewing hurts my jaw; basically anything physical that I do zaps my muscles. If you've ever worked out at a gym and felt muscle burn, that's what I feel within seconds of normal activity. Dozens of nerve conduction studies and EMGs, two thigh muscle biopsies; three specialty hospitals later, I've been told it's not associated with sjogren's but is likely a glycogen storage disease...except none of the neuromuscular doctors, rheumatologists or neurologists can tell me definitively. I know this doesn't help anyone else here, but thought I would share. My preferred nickname is "still searching." lol

  • Hi TallyNole

    Thanks for your reply. Unfortunately i still have no diagnosis and was discharged from the rheumy after 2 visits and only had one raised CK blood test at 739 before it returning to 46 which is normal. but see immunologist this thurs for the first time. Not sure how this will go.

    I saw a good physio for assessment and he has confirmed i have something neurological going on, but equally this could be secondary to a rheumatic condition. It is affecting my balance and proprioception. Also i have muscles that fatigue WITHOUT pain...it is more like lactic build up feeling that dissipates quickly. While my muscle power seems ok on testing, in reality i cant do as much functionally like lift my daughter into a trolley or open jars etc so think there is some impact on my strength but mildly.

    I do have a neurologist appointment in june so will probably be subject to emg and biopsies but i have heard she is an awful woman and might seek an alternative referral lol!

    I will try to come back here with any findings.

    Thanks for sharing your experiences

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