Living with sarcoidosis

Living with sarcoidosis

Hi all, my name is Annie & I am 47 years old, I was diagnosed with Sara at 46 .... after 2 yrs of going backwards and forwards to my GP I developed a swollen ankle with bruising and red lumps up my leg. The swelling was so bad I had to use crutches. I felt so tired and so poorly all the time, I finally got diagnosed was given prednisone was told a couple of months later my lungs had cleared and was in remission. Great right?!! No !!!! I feel ill constantly, painful aches everywhere , o step I fell and broke my wrist, my left hip constantly aches as does my groin too. Had to give up my job as feet were so painful and my arms too, I could go on & on ..... I have an appointment at rheumatology this week for my feet which are in constant pain. I've read so many times thecondition will eventually go but I'm still waiting and I fear this will never happen. Thankyou to all of you tht have read my story all the way through as a sarcoidosis sufferer you quite often feel you are boring people with all your ailments . Much love to u all Annie xxxx

5 Replies

  • Hi Annie , snap on all points. They say my bloods n x ray show no sarcoidosis but my feet are agony as is the whole of my body I too am under rheumatology and have two self administered injections , pain killers etc etc I will always think that these pains are more sarcoidosis than rheumatic stiffness muscle aches etc to the extent that I cant hold the phone to my ear anymore as I ache too much !! I hope your hospital sorts it out. Ours is the worst performing in U.K. And you can tell !! I wish I had insisted to be reffered to and expert in sarcoidosis and maybe you should do this as once under rheumatology they blame everything on that . I wish you all the luck in the world and the pic is lovely x

  • Hello Bebo 1

    I am yet to have a confirmed diagnosis and have been holding back on commenting on here because of that. However, no one where I live knows the first thing about Sarcoidosis... so I did a bit of research and discovered the specialist service at the Royal Free in London. It took a bit of persuasion but my GP eventually referred me through the choose and book system. I'm currently waiting for results of scans, lung function tests etc.

    Whether you are already diagnosed or not you can ask your GP to refer you and I would strongly suggest that you do. Have a look at the Royal Free Hospital website for more information and if your GP is reluctant to refer, ask him/her to have a look too!

    I wish you the very best on your journey to find out what is happening in your body and sincerely hope you get the best help possible in managing it.


  • Thanks will look into it. Hope you get better soon. X

  • I have sarcoidosis and I would just like to point out the following webpage of the Royal Brompton Hospital in London which is a specialist lung (and heart) hospital which on their page says:

    Can I take vitamins and supplements?

    You should avoid taking vitamin D, as this vitamin is produced in excess by sarcoid granulomas. Unless osteoporosis is present, we normally recommend also avoiding calcium supplements, although this can be discussed on a case-by-case basis.

    There is lots of information about sarcoidosis on their website

    I have a friend who had the red swollen ankles and was diagnosed with pulmonary sarcoidosis. He was however clear of sarcoidosis in a year or so. That was more than 10 years ago.

  • lovely photo, does not show what you are going through, but heh it is cheerful with little baby too. I am 57 , started having health problems age 30, x-ray showed spondylosis, then another x-ray showed congenital dislocated hip. things got worse, chronic fatigue, fibromyalgia, ehlerdanlos syndrome, sjin infetions, hernia, varicose veins, irritable bowel,eye pronblems, vertigo,migraine, interstial cystitis, trimeginial neuralgia. predlisone and anti-biotics helped. had hat appeared to be a heart attack, had clot busting drugs, arteries were fine . had sthma,ws prescribed inhalers. then march this year had cardiac ct scan, have enlarged lymph nodes on lungs, findings consistent with sarcoidodsis, yet only way to get definite diagnosis is with biopsy, have had more ct scans, it is still there. My elbow is very painful, feel really tired, have no energy, half sleep all the time. lung function and bloods fine. etting bronchial problems and asthma, legs feel wobbly, is it ehler danlos syndrome or sarcoidosis, have been like this for last 27 years, getting worse, ah well, what will be best wishes to all