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Ache's and pains

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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

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  • brenda40968
    brenda40968 Gibby999

    Posted

    I have just been diagnosed with this. I have been in so much pain for 2 years. Now I have attacks that feel like I'm having a heart attack. I've been in emergency room 3 times. They says nothing with my heart. Anyone else have this? I am scheduled for a stress test in a month.

    • DaShaun0976
      DaShaun0976 brenda40968

      Posted

      I have had this for a couple of years and it seems to be getting worse. I've been to the emergency room twice this year due to heart issues and they always say the same thing. That nothing is wrong, but it feels like it is to me.

    • camey03589
      camey03589 brenda40968

      Posted

      Sarcoidosis can cause high calcium, which at high levels can cause heart issues, it can invade your thyroid again causing palpitations. Find a regular dr. Neuro, Internal medicine, or rheumatologist. Would be a start or call your insurance and ask for a referral for sarcoidosis.
  • Katlis
    Katlis Gibby999

    Posted

    My Dr says im in my 2nd year of having this Sarcoidosis disease but should be back to normal once 2 years is up is this for real??? Any ??? Cause im still having pains!!
    • camey03589
      camey03589 Katlis

      Posted

      I have heard that, if it’s contained to your lungs. Everyone on this forum I’m pretty sure has had at least one reoccurrence or it has not gone away.
    • Katlis
      Katlis camey03589

      Posted

      Well it is in my lungs was also in my lymphnodes but not as bad however trouble with my joints hasnt stopped also having trouble with my shoulder and now its frozen but people on my insurance say i should be abke to work again soon im in nursing i cant even think of helping someone in and out of bed with one arm and sore ankles like honestly im sick of it all
    • camey03589
      camey03589 Katlis

      Posted

      If you don’t mind me asking are you in the US? I am going to the Endocrinologist tomorrow they suspect cancel in my thyroid and pancreas and I think it’s sarcoid. If you are in the US I have someone that can help you with Disability possibly.
    • camey03589
      camey03589 Katlis

      Posted

      Is there such a thing of social security that is mandatory you pay your whole life?
  • donn54320
    donn54320 Gibby999

    Posted

    ...have aches and pains over a lot of my body...especially legs...was diagnosed november 11 2016 ...told had pancreatic cancer ...further testing eliminated cancer and uncovered sarcoidosis ..have no idea how long i have had it ...reasonably sure did not have in my 20s...was told within last 2 weeks that it was still progressing ...after testing MRIs etc...although pain has subsided somewhat...from its peak..was hoping i was in remission ...not the case at least for now ...am in mid 60s
    • camey03589
      camey03589 donn54320

      Posted

      I starting to wonder if we all had it in some form or fashion I think now I had it on my skin they said it was contact dermatitis, for months. Then full blown in late 40’s with a vengeance. I just know it needs more attention than what it’s getting. Thank for your information.
  • camey03589
    camey03589 Gibby999

    Posted

    I am in pain all the time. I have a stimulator implant that helps a lot but still take pain meds. Acupuncture is helpful, light massage and chiropractic treatment and salt baths and water aerobics my Dr. Wrote me a script for a pool.
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