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Hi all I’ve just been diagnosed with Sjogren

Posted , 8 users are following.

pete68214
pete68214

The problem I have is with my feet, the pain is unbearable, walking is virtually impossible. I’ve been taking morphine, and now have been prescribed tramadol. But these pain killers have also stopped working. My feet look perfectly fine but the pain within is killing.   Any advice would be much appreciated 

0 likes, 17 replies

17 Replies

  • amkoffee
    amkoffee pete68214

    Posted

    I don't have any advice for you but I'm waiting to have my lip biopsy done to confirm that I do have Sjogren's and my feet are in so much pain like you I can barely walk. I certainly don't walk without pain. I am taking morphine and oxycodone and it's not touching the ankle and foot pain. I also take prednisone for another illness I have called polymyalgia rheumatica. But from my reading of SS it does mention joint pain as a symptom. So I'm assuming that's what you and I are suffering from. I don't know about you but my hands hurt really bad too and then I've got some pain in my knees and elbows too. I really can't tell which of the 2 diseases the pain is coming from. I hope somebody gets on here with some great advice for both of us

    • Tumtum1963
      Tumtum1963 amkoffee

      Posted

      I had a diagnosis of RA overturned last year because of +ANA and positive lip biopsy - after six years of excruciating pain in feet, ankles, wrists and knuckles. It seems that Sjögren’s can often imitate RA to perfection so it definitely can abc does affect the joints for some of us - maybe the seronegative people?

      Mine is too busy imitating MS these days to bother with joint pain but I’ve learnt that one set of symptoms can come and go only to be replaced by another. 

  • margaret22116
    margaret22116 pete68214

    Posted

    hi, I've had the same issue and hydroxychlorequine and it's taken all the pain out of my feet. It's been amazing for me. I had excruciating pain and kept falling over. I had bursitis and peripheral neuropathy in my feet and also developed a plantar fibroma. Not the best summer for my feet. Was living in one pair of quite open shoes because everything else hurt. My specialist prescribed this medication and it has been great. 

    • pete68214
      pete68214 margaret22116

      Posted

      Thanks Margaret, I’ve got appointment on Tuesday and will discuss. Once again thank you and fingers crossed it also helps me too.
    • amkoffee
      amkoffee margaret22116

      Posted

      I was on hydroxchlorequine for several months to see if that helped my pain any and I didn't think it had so I finally stopped it at my rheumatologist suggestion. But it was when I stopped it that I started having extraordinary amounts of pain in my joints. So I'm going to start it again and my rheumatologist is okay with that but I can't start it until after I have an MRI done on my hands. And if I get on that medicine before my MRI it could affect but they might see in the MRI. So I'm gritting my teeth and bearing it for a little while. Actually I think my MRI is scheduled for next week.

    • margaret22116
      margaret22116 amkoffee

      Posted

      Yes I had pain in my hands too at one point. I am not sure now whether going back onto interferon might help. That got rid of all my symptoms.
  • Tumtum1963
    Tumtum1963 pete68214

    Posted

    I have this too - in fingertips and mouth too - the rest is numb. I have to take a fold out seat stick with me everywhere now - have had this for 7 years so mine is permanent but has mainly progressed to numbness. It’s called Small Fibre Neuropathy. They may offer you drugs such Gabapentin or Pregabalin as pain relief. I couldn’t tolerate these but take an immunosuppressant called Mycophenolate at max dosage - but too late as  irreversible damage has occurred. All I can say is that disease modifying anti rheumatic drugs really did help me in the first few years but I had rare allergic reactions  to 4 of these. Steroids really helped too but they took me off these after awhile. Sorry if this doesn’t offer much hope - it’s extremely painful I know.

    All I can offer you is heaps of sympathy and advice to push for inmubesuppresant treatment asap so you can hopefully reverse it because it becomes permanent numbness like mine. 

    • Tumtum1963
      Tumtum1963

      Posted

      Ps sorry about typos - neuropathy in fingertips plus brain ache!! 
    • margaret22116
      margaret22116 Tumtum1963

      Posted

      Tumtum have you tried hydroxychlorequine?? I too had the numbness and this has helped.
    • Tumtum1963
      Tumtum1963 margaret22116

      Posted

      I have tried it - for 18 months with Methotrexate. Finally I couldn’t tolerate either drug. They helped with joint pain and stiffness but did not prevent the small fibre neuropathy from taking hold. I’m on 3grams of Mycophenolate daily now but am told that the nerve damage I’ve sustained (numbness, autonomic dysfunction) have caused ireversable damage.
    • margaret22116
      margaret22116 Tumtum1963

      Posted

      Poor you. Such miserable disorders these aren't they. I am lucky that no actual nerve damage has ocurred. Had nerve study done recently.

  • beverly39559
    beverly39559 pete68214

    Posted

    I too have small fiber neuropathy in my ankles and feet. I’ve been on Azathioprine (an immunosuppressant) for 5 years. It has kept things stable for me so I’m very happy. I can still walk every morning although at times painful and get unsteady feeling in my feet/ankles. I don’t walk alone in case I fall but it’s helped keep my weight stable also. I don’t think it will ever go away but I’m trying a gluten free diet to see if it helps. My neurologist feels it’s worth a try and says a few of his MS patients on gluten free say they  feel somewhat better. We just have to try different things before we give up all hope of a pain free life. Sjögrens is much more than dryness. 

    • Tumtum1963
      Tumtum1963 beverly39559

      Posted

      Oh I admit I’m rather envious of you for being good with Azathioprine. It was brilliant for my small fibre neuropathy - worked almost instantly and I was high as a kite. Then, 3 weeks into taking it, I developed pancreatitis and was hospitalised twice for two weeks! 
    • beverly39559
      beverly39559 Tumtum1963

      Posted

      I’m sorry to hear that. Do they think the pancreatitis was caused by the azathioprine?
    • Megheart
      Megheart beverly39559

      Posted

      "Sjögrens is much more than dryness."

      Absolutely true Beverly!

    • Tumtum1963
      Tumtum1963 beverly39559

      Posted

      Yes - although initially it was diagnosed and treated as UTI sepsis. Then, when I reastarted the Aza the pancreatitis came back. It affects about one in 200 this way I think so just very unlucky. 
    • Tumtum1963
      Tumtum1963 Megheart

      Posted

      Or systemic dryness is much more than sicca perhaps? After all what happens to most living things if deprived of moisture? 
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