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

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  • 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.

    Bolly61

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

  • Hi Bebo. I inject my self with metoject and enbrel every week. If you don't get less pain with your injections ....I assume biotheraphy then swop to a different one. I was on enbrel to begin with but changed to humira which brought me out in an itchy rash. I then had hospital infusions every six weeks with remicad which gave me deformed finger and toe nails together with severe hand pain and lethargy. I have now gone back on enbrel and it suits me well. I used 60 mg codeine, 1000 mg paracetamol and 200 mg tramadol and chronoindocid 75mg and if I miss one product or take them later than normal I can hardly walk

    Good luck. Graham

  • 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 rbht.nhs.uk/patients/condit... 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

    rbht.nhs.uk/patients/condit...

    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

  • Hi all

    I had the symptom of loss of appetite, fatigue, so tired unable to get up from the bed, dry cough and sudden drop in weight. Was treated for adult primary complex for one year without any progress. After ruling out Tuberculosis, HIV, Cancer it was deduced to be sarcoidosis, confirmed thro Biopsy. At present I am under steroid and there is good progress

  • Hi auntieannie

    You will be alright which you may see from my experience. I will also pray for speedy recovery

  • Hi everyone. I was diagnosed last April after developing a lump on my arm which they first thought was cancer. I have been treated for asthma for twenty years and and been feeling constantly tired with aches and pains all over my body. My cough was getting worse and worse in the past two years. I now know that I have chronic sarcoidosis. I am being treated with prednisolone which has calmed my cough and made my lump disappear. I have been very poorly with chronic fatigue. I now have the answer of my ailments and the treatment creates other unpleasant side effects. My children are getting bored of me explaining this disease which I have researched so much on the Internet since my diagnosis. Feel I must start 2017 with determination of not letting this disease take my life over. Wishing everyone strength. Back from a short vacation and have realised I must not bore my children and friends with an ailment which we all know is hard to live with. I also have lupus pernio and glaucoma. My knees have been very painful since my treatment and my legs are weak. Can t hide a funny walk. Let's all help each other by listening to one another. Only when one experience something that one can empathise properly with others. MH