Skin Sarcoidosis - but is my CFS/ME actually Sarcoidosis too?

Posted , 2 users are following.

Hi all,

I had a skin biopsy done a couple of years ago for a persistent rash and it came back as sarcoid.  However, I also have CFS - a diagnosis given when tests for other illnesses like lupus, rheumatoid arthritis and others were negative.  It is now 7 years on and I am still ill, and much worse.  I am now hypothyroid, diabetic, very overweight, have arthritis in my spine, carpal tunnel, depression, fibromyalgia, chronic pain in my joints, chronic fatigue, blurry vision, peripheral neuropathy, am breathless at the least exertion, suffer IBS, high blood pressure, brain fog and am, frankly, totally fed up.  Nothing ever came of the skin sarcoid diagnosis bar some emollient prescribed to help with it.  I am now wondering if it is sarcoidosis causing many of the other ailments?  Is it possible?  If so, how do I get my GP to listen to me and get a proper diagnosis?  I feel as though I have been left aside and am living on painkillers and other drugs with no prospect of ever knowing what is really wrong with me.

Can anyone help or advise?

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  • Posted

    Hi Shreddie,

    I'm really sorry that you have to go through all these!

    As far as I know, sarcoidosis can cause arthritis, chronic pain in joints, chronic fatigue, blurry vision, difficulty breathing (if it affects lungs), brain fog, and maybe some other conditions you're dealing with. Since you have so many health problems, it's very difficult to get a treatment because drugs can interfere with each other, causing dangerous side effects. Additionally, there is no treatment for sarcoidosis. Prednisone and other immunosuppressive drugs can help slow down the condition, but they cannot cure it.

    I'm not sure what advice to give you (especially that I'm not a doctor). In my opinion, you should first see a specialist for your hypothyroid; the right treatment for your thyroid condition together with the right regime could help you get rid of many pounds, which will improve your overall condition. You'll be able to breath and move around easier, which will be good for the entire body. But, again, I'm not a doctor, so it's better to talk with your GP openly - maybe even change your doctor if he doens't listen to you (in my country, we can change our doctors).

    Good luck and hope you'll find a good doctor who can help you get better.

    All the best,


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  • Posted

    thanks Magda.  I will take your advice and go back to my GP.  I realise it is not a good thing to have sarcoidosis but when a person is ill he or she wants the certainty of a diagnosis to know what to work from.
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    • Posted

      Hi Shreddie,

      I know how annoying it can be to wait for a diagnosis for years. I've been deadling with pulmonary problems for the last 10 years (no one really knew what I had) and only last year I was diagnosed with sarcoidosis. Meantime, I have been through hell, being diagnosed with all sorts of conditions, from pneumonia to idiopathic fibrosis; they even told me that I need lung transplantation. I did all the paperwork needed, I went to Vienna, Austria, for check-up, and I saw all the specialists indicated to get approval...anyways, the point is to never give up. I continued to see the same doctor (who is actually a good specialist - she is a peumologist), went for my check ups, and one thing led to another to finally be diagnosed with lung sarcoidosis.

      I talked openly with my doctor, and she told me that sarcoidosis is very difficult to diagnose because the symptoms can appear in many other diseases. I searched online, and I found the same thing. So, it's not necessarily ill will; it's just that many doctors give patients a wrong diagnosis and they are very skeptical when patients complain about some symptoms like extreme tiredness, difficulty breathing, insomnia, etc. For instance, I couldn't sleep because I was going through a flare-up, but my doctor told me that I cannot sleep because I live a sedentary life. In my opinion, most doctors know nothing - or very little - about sarcoidosis and symptoms. The patient always knows more about the condition he suffered from than the doctor...

      What else can I say?

      Take care and let's hope for the best smile

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  • Posted

    Hi I have chronic sarcoidosis 

    but I had to change my doctor before I could be diagnosed 

    after that it took alot of tests and waiting for results to finally get the answers 

    I was looking for and even now it is only my rumatoligist that understands 

    I don't have problems with my skin but I have stiffness in my legs and don't move as easily as I used to - I don't like the sun makes me worse I have fertig and breathlessness- which is the nodual on my lung - I have been taking steroids for two years and these are great but I can not take them for much longer - I would try and change your doctor and ask to be refers to a rumatoligist he then can do blood tests mine was showing anti nuclear antibodys hope you feel better soon I am 47 and live in Sunderland and I'm the only patient my doc has with sarcoidosis so I think it not that common 

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    • Posted

      Thanks Sharon for your message.  I recently moved house and am with a new doctor.  The reason I was asking could my main problem be sarcoidosis is that skin sarcoid is unusual as the only symptom.  Normally the disease starts in the lung and manifests in other organs later.  I know that sarcoidosis is a relatively rare diagnosis and few doctors know anything about it which makes it difficult to get a diagnosis if that is what is wrong.  The dermatologist who diagnosed skin sarcoid said he had never seen it before despite having worked for many years.  I think I will go to my new doctor and ask for a referral to a rheumatologist.  I have been ill now for more than 7 years so there is definitely something wrong.  I think CFS/ME is what they say you have if they don't really have any idea.  I have the dreadful fatigue (where it feels like weights are tied to every limb), also find the sun makes me feel worse generally.  I have stiffness and dreadful pain in my legs and ankles all the time as well as the breathlessness you mentioned.  No matter what I do whether it is going up stairs or putting on my clothes I am breathless and I feel it is getting worse.  You do get a bit fed up trying to get people to listen and believe you but I really feel I deserve to know what is wrong, and treat my symptoms accordingly rather than just painkillers and anti-depressants.
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