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Fatigue in my arms

Posted , 6 users are following.

Tumtum1963
Tumtum1963

When I try to describe this to anyone I only get suggestions of conditions or problems that I definitely don’t have such as Carpal Tunnel or other types of nerve entrapment. 

I’m told I have quite an advanced small fibre neuropathy and ganglionopathy but these have never been confirmed by tears apart from lip biopsy being 100% positive and high ANA. 

I can find power in my arms and legs but always they feel as if I won’t be able to ever move them again? When I’m not using them for work or tasks all I want to do is test them on soft pillows. The fatigue seems to radiate all the way down through my elbows into my wrists, hands and finger tips. It’s got so bad that I take a soft pillow with me in the car to rest both arms and hands on if I’m being driven. It’s resting that is the problem - not being active. Although my legs and balance are affected too so I found it hard to stand still and am always a bit dizzy and off kilter.

Does all this, particularly this resting fatigue in arms and hands, sound familiar to anyone else with Sjögren’s? When I look this up this symptom on google RA flags up. I was initially diagnosed with RA but now my diagnosis has been changed to primary Sjögren’s. It is entirely bilateral and I have pins and needles in both arms, numb fingertips, feet and face - vibration and tingle everywhere. But it’s this total exhaustion in my extremities that’s really getting me down just now. 

0 likes, 12 replies

12 Replies

  • Tumtum1963
    Tumtum1963

    Posted

    .. sorry about typos - numb funger tips and fatigue make a bad combo! I meant to writer never been confirmed by any tests .. just presumed. 
  • Megheart
    Megheart Tumtum1963

    Posted

    Very early in my illness (non-confirmed SS) I had this type of fatigue in my legs. When walking it was like walking through mud. I could barely lift them. I have had a lesser degree of the same thing in my arms, so understand what you are talking about.

    I also have peripheral neuropath. I have had the tingling, the vibrations and fasciculations for several years but all of them are much better now.

    It's possible that those with moderate to severe neurological symptoms may get this.

    • Tumtum1963
      Tumtum1963 Megheart

      Posted

      Thanks Megheart. Mine has affected me for 7 years in this way now and, if anything, it is slowly progressing. What has helped yours do you think? I was told that the SFN of Sjögren’s rarely keeps progressing like mine seems to. It is supposed to be self limiting apparently but I do feel mine is  still progressing slowly but surely. 

  • beverly39559
    beverly39559 Tumtum1963

    Posted

    You are the first person that seems to know how I feel too and have for many years. You describe my symptoms so completely. I have Sjogrens and small fiber neuropathy. Some of my first symptoms were a feeling of fatigue in my arms and wrists. Laying them on a soft pillow feels better. It’s so hard to explain to others this feeling. I have fatigue when I’m resting in my arms, wrists, ankles and feet. Just a tired weak feeling all the time. I never feel refreshed when I wake up after 7-8 hours of sleep. I’m still so weak and tired. I always feel slightly dizzy and off balance too and always afraid I will fall. I always have a headache also. I told the doctor I have a dizzy headache all the time. This has been for over 25 years. I manage to do most of my activities but always weak and numb feeling. Not a good quality of life!!  
    • Tumtum1963
      Tumtum1963 beverly39559

      Posted

      Beverly I’m sorry that you have this problem too. But also relieved to find someone who totally “gets it”. Has it progressed do you feel? Do you have good doctors who monitor your neuropathy and are you on any meds that are effective  for the neuropathy? 
    • beverly39559
      beverly39559 Tumtum1963

      Posted

      Hi ..........yes I have a good doctor that I've been with for over 5 years. I'm on Azathioprine 100mg/dly for the neuropathy. It's an immunosuppressive drug which is scary but so far so good.  Don't think I'm any worse than I was 5 years ago............but not any better. I stay the same in my strength and the only thing that seems to be happening is that I get numbness and a weird feeling in my finger tips now and then. Right now it's gone but it has been happening which sort of scares me a bit. 

      So good to have this website. No one understands and I try real hard not to complain to my husband or friends. They've heard it before and gets old after awhile especially because I look the same as I've always looked but the numbness, pain and dryness are undetectable  to others so they really don't get it. 

      A lot worse things could happen so trying to stay positive  

    • Tumtum1963
      Tumtum1963 beverly39559

      Posted

      Hi Beverly. Yes we seem to have identical symptoms as I’ve been getting the numb fingertips as well - also face, lips and gums plus feet. Pins and needles everywhere. 

      I tried Azathioprine but after three weeks it landed me in hospital for 2 weeks with pancreatitis. The Mycophenolate is much the same degree of immunesuppression but the numbness had already taken hold. My neurologist says it’s a negative symptom as it means there’s irepairable damage been done. I do try and explain to my husband but he doesn’t really grasp how depressing it is to be turning gradually numb! 

      Also my digestive system is quite badly affected by autonomic neuropathy and I have stage 2 chronic kidney disease I believe so am on BP med as well. Hey ho as you say it’s good to have people to share with. 

    • beverly39559
      beverly39559 Tumtum1963

      Posted

      It is good to talk to others with similar problems. Have you ever tried altering your diet.....gluten free, less sugar etc etc.?  I’m talking a nutrition class right now and interesting to listen to the instructor talk about inflammation and diet. When I get lightheaded I seem to head to the kitchen and seems I go for sweets when I feel weak. I know that isn’t the answer and it’s a viscous circle. I’ll go for several weeks eating better then all of a sudden I’m back eating junk. Sounds like a lot of people talk about GI problems associated with SS but I haven’t had that problem so far but my mouth is so dry all the time and sometimes hard to swallow and sound like I have throat problems when I talk. Chewing sugarless gum really helps with that problem. 

      Hope you have a good night !! 

  • maggie98748
    maggie98748 Tumtum1963

    Posted

    Hello Tatum. I have all the symptoms of SS but I also have vestibular migraine which gives me all of the symptoms you describe of heavy tired limbs that make me feel as if I will not be able to take another step. Before treatment for vestibular migraine I had to walk with a stick to stop me falling which I did frequently. It is caused by chaotic electrical activity in the brain and mine has responded well to anticonvulsant medication. I don't know if it is connected in any way to SS but I have gastroparesis, very dry eyes, dry mouth, painful muscles and joints for which I take hydroxychloroquine which has worked wonders as I have erosive/inflammatory arthritis too. I tested negative for SS but as I have all of the symptoms I just wonder if there is an overlap going on here as the brain after all is the conductor of our bodies. Just a thought. Did you ever have migraines? You don't need to have headaches now, but can do for a vestibular migraine diagnosis as it is the vestibular system that is affected by the disrupted electrical activity. I also think this is the case with gastroparesis which is controlled by the vagus nerve which innervates from the brain. I am going off piste here, sorry, but I have spent ages trying to work it all out for myself as I cannot get any doctors to piece it all together.

    • Tumtum1963
      Tumtum1963 maggie98748

      Posted

      Yes Maggie I have all your symptoms but only non erosive inflammatory arthritis/ polyarthritis which the Mycophenolate has chased off. I’m not sure about gastroparesis though but an having a barium swallow in a few weeks. I think im probably affected more by dryness in the digestive tract than neuropathy but hard to say. 

      I have early stage kidney disease and also struggle horribly with my balance but as told this is because the neuropathy in feet  is messing with my proprioception? Can’t stand for longer than 30 seconds without crumbling or having to sit now - no explanation for this. Can’t turn my head while standing or walking without sensation of falling - told proprioception. Not sure about this as I also have hearing loss and tinnitus plus numb face but they seem to think it’s not migraine or vestibular? 

      Anyway it sucks abd is definitely Sjögren’s for me. I don’t have the specific markers but I do have +ANA and lip biopsy as I said earlier. Hateful when we can’t get clarity though but glad meds have helped you. I can’t terate nerve pain meds at all or Hyddoxichloraquine so just take Mycophenolate - which is an immunesupressant. 

  • aitarg35939
    aitarg35939 Tumtum1963

    Posted

    It's been my understanding that a loss of strength in hands & arms can be a symptom in the SS stable, and I've got that. Since I've also got massive back, joint & muscle damage from an accident it is hard to know where one thing begins ,,, meanwhile, I've been on gabapentin for 20+ years, for chronic pain & nerve issues. After years of intermittent SFN, I now take an extra capsule when the tingling or burning starts in my feet. This is okay with my new neuro, forgot to mention to the new rheumo.

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