1. Community
  2. Chest and lungs
  3. Sarcoidosis

Ache's and pains

Posted , 6 users are following.

Gibby999
Gibby999

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.

0 likes, 30 replies

30 Replies

Next
  • camey03589
    camey03589 Gibby999

    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!
    • Gibby999
      Gibby999 camey03589

      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

    • Katlis
      Katlis Gibby999

      Posted

      Thank u and u take care and good look!!
    • camey03589
      camey03589 Gibby999

      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!
    • camey03589
      camey03589 Katlis

      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.
    • camey03589
      camey03589 DaShaun0976

      Posted

      Absolutely, I have had blood transfusions from leaky spleen. When lymph nodes are involved it’s call disseminated
    • DaShaun0976
      DaShaun0976 camey03589

      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.

    • camey03589
      camey03589 DaShaun0976

      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!
  • Katlis
    Katlis Gibby999

    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!!

    • Gibby999
      Gibby999 Katlis

      Posted

      I know what you mean I don't seem to get much sleep these days, I suppose it's just a matter of taking pain killers take care

    • Katlis
      Katlis Gibby999

      Posted

      If you dont mind medical marijuana or should try it does actually help esp if u cant get comfortable

    • camey03589
      camey03589 Katlis

      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.
    • camey03589
      camey03589 Gibby999

      Posted

      Have you considered a pain stimulation device it really helps my leg pain?!
    • camey03589
      camey03589 Gibby999

      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!
    • Gibby999
      Gibby999 camey03589

      Posted

      Thankyou so much for all your help I shall certainly try some of your advice, where do you get a pain stimulation device?
    • camey03589
      camey03589 Gibby999

      Posted

      From Pain Management you might call Boston Scientific I’m in Texas. I’m sure if you call them they could set you up.
Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.