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

13 Replies

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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.

  • Hi sarcoid123, I am new to the Sarco' forum but like you have investigated through the 'interWeb'. There is sooo much information about the condition. People need to read with care and talk to their consultant with ammunition to question what is said.

    I suppose I was lucky to an extent in that I was diagnosed via an Oncology clinic as they saw enlarged Lymphnodes and sent me for a biopsy came back Sarcoidosis :) :( both at the same time

  • 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

  • Hi I’m new here I was diagnosed on Thursday so very new . First I went to drs told couldn’t have appointment as no spaces so saw triage nurse who got dr and given antibiotics. Was told come back in three days if no better so went back saw another dr told urgent hospital appointment would be made still no appointment so a fortnight of Gp trying to help eventually went to see Ent told they wanted me to go into hospital straight away for IV antibiotics as I had a bad throat infection said I couldn’t as I had a special needs youngster to look after and needed to sort things. I was given strong antibiotics and allowed home from then on it went down hill, went back to ent for routine appointment told all was ok but would have a scan in a fortnight but took a month was told had a node in thyroid but nothing to worry about but just keep an eye I was getting real poorly and was told nothing wrong just falling apart. I felt so poorly was told by Gp could not see dr as no slots left not allowed to see nurse as on going problem so went home to bed next day phoned 111 had to go to hospital admitted but told next day just need hearing aid went home got worse Gp told hubby take me back to hospital where they found my lingual tonsils were very enlarged and ct scan would be done within week it took three weeks phone call next day they needed to admit me where I was for a week various drs conflicting with each other was on IV antibiotics various scans done results would be given in outpatient appointment went and was told everything ok then a phone call from respitory came to say urgent appointment I was given was seen next day where I was told I had this Sarcoidosis and apparently Ent knew . You can imagine how I feel having lung test this week as very breathless and if I do anything I feel poorly our hospital is in special messures I can understand why

    If anyone has any suggestions greatly received, sorry for long write up but wanted others to know you may feel your going mad your not alone

    into hospital over the weekend and told I just needed a hearing aid

  • Hi hon, I’m so sorry to hear you’ve been and are still going thru such a rough time.

    Sarcoidosis affects us all in so many different ways . I never had a sore throat , got out of breath every now and again , my biggest issue was the tiredness (fatigue) . As you’ve probably read my story I won’t go over it all again. But I will say I’m 3 years down the line and the pain I suffer (particularly at night time) is unbearable . Doctors , hospital are all so useless as there really is nothing else they can do for me apart from steroids , and painkillers . I have learnt to rest & sleep without feeling guilty now it truly does help.

    You certainly find out who your true friends are too. 😀

    Stick with pestering the Doctors until you get to the bottom of this and research research research !!!!

    I really wish you well Happy girl and I’m always here if you fancy a moan lol, I know I do 🙄🙄 xxx big hugs Anniexx

  • Thankyou Auntannie for your kind reply. I must admit I felt at times I was going nuts and began to think was it all in my mind but got there in the end and now knowing there is this site reading others problems helps so thankyou.

    Anyone going through it don’t give up sure there will be someone on this site who will be able to help guide you

    Thanks again and all the best to you

    Kind regards

    Linda

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