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Posted , 4 users are following.

Thesufferer
Thesufferer

Hi.

It's been a while since I posted here but here I am again with more questions.

I was feeling better for a while but lately I've been having what feels like bee sting -but not as painful-  in my sides but mostly my right one above the waist and it's really scaring me since I have anxiety and I just keep thinking the disease is attacking my kidneys and liver.... It also feels like heat in those areas but the skin itself doesn't feel hot. Anyone can tell me anything about this.

Is a PET scan a must with this god damn disease? I don't even know if I can get one.

Also, I keep reading that diet, good sleep and a reduction of stress are all important but in my case that's really impossible. I'm lucky if I can drink water in the morning and I can't eat more than once a day. I'm trying for more fruits and veggies but I have a very poor appetite and I struggle to make myself eat. Sleeping isn't easy either and I can't sleep early no matter what. I also suffer from anxiety and stress and I realize now that stress does make my symptoms worse but there's really nothing I can do to lower my stress and anxiety and they won't give me any meds for that here no matter what. I don't know how I'm going to fight this damn disease.

0 likes, 2 replies

2 Replies

  • dina46599
    dina46599 Thesufferer

    Posted

    Hi  TheSufferer

    ?This past week I met a nurse from our local kidney clinic.She told me to stop using Aleve, Motrin,Advil as kidney doctors do not want kidney patients on them.I've been using them for years and it is because I,am allergic to Tylenol,Asprin etc. My bladder has stopped working currently. I wonder if there is a link? Since being on Prenisone for for Sarcoidosis. I have become very weak.I feel the sickest ever in my life.I just finished antibiotics for a kidney infection but sill feel very sick. I almost fell 4 times at my doctor's office 2 days ago. The Prenisone seems to be effecting my leg muscles.

  • tangles
    tangles Thesufferer

    Posted

    With sarcoid sufferers it is a good idea to have the following ultra sounds to look for enlargement of

    Liver 

    Spleen

    Kidneys

    I have enlargement of the first two organs

    Tangles

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