Ache's and pains

Posted , 6 users are following.

Hi there I had sarcoidosis in my early twenties and got over quite quickly, but I remember my consultant telling me I would be prone to aches and pains in later life. Iam now in my sixties and my pains are all over my body especially my legs I don't know if this is anything to do with the illness, has anyone else be told the same thing.

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  • Posted

    I was diagnosed in 2011 in renal failure and spleen leaking, so I had blood transfusions, they thought I had lymphoma in my spleen, but was sarcoidosis I was 48 now I am still doing Remicade to keep it under control, extremely suffer from joint pain in legs, hips, low back and feet. Consider yourself blessed that you got a thirty something years reprieve! God bless you!
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    • Posted

      Iam so sorry what you have been through its such a horrible disease, I suppose with the pain I just get worried what it's going to be like as I get in my 70s and 80s anyway take care and good luck

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    • Posted

      I’m going to be frank; I don’t know about anyone else. Each individual is different but unless it’s god’s will. I don’t think my other organs will last that long. I had a lot of damage before they found it, but we must keep fighting the good fight. Eat healthy exercise when you can, rest when your body is screaming at you, even if you have something that can’t wait. And of course dance like no one is watching!
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    • Posted

      Have you tried acupuncture? I do what ever I can think of when something stops working I try something else. Steroids only as a last resource, the rebound from them is relentless. Let me know if I can help.
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    • Posted

      I'm going through spleen and lymph pain now. I'm actually in the CT office as we speak. They are testing me for lymphoma, but I have had active nodes for over 10 yrs. It has gotten really bad in the last couple of months though.

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    • Posted

      God bless you! The day they found that, I was also in renal failure, but they got me through that after 2 weeks in a isolation, bone marrow testing, ct’s, liver biopsy and ever other test thinking I had lymphoma in my spleen, they went in to take it out and found the sarcoidosis and it was everywhere, liver, spleen, stomach, bowel, skin. Please post what they find out, thoughts and prayers for all of you!
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  • Posted

    Yes it is i've had it since june /2016 and have never been a person in any kinda of pain never even took medications until now and boy i even need pain sedation now i wake up in middle of the night in sweat and pain in my ankles and shoulder!!

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    • Posted

      I’m so sorry! Remicade and Mexotrexate help if you can tolerate them. I have a pain stimulation device, take muscle relaxers and 8 mg of suboxone vs. 2 mg now. Fentanyl was too much. Even with all that pain on my entire right side from hand to hip is so painful when I lay on it I want to vomit. That seems to be the best they can do with out more steroids and I can’t do anymore I’m diabetic and my sugar is out of control. God help and bless us all.
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    • Posted

      When my legs are really hurting I get up in the middle of the night and take a bath as hot as I can stand, but make sure you stay hydrated at night, I keep smart water by my bed, make sure you potassium and magnesium isn’t off, no caffeine or at least minimize it. And if you can do acupuncture if you can do about 6 treatments at least, it will help. Take care if I can help please reach out!
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