I'm just interested to know if anyone

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When i was 29 i was told that i had sarcoidosis on my lungs, complete on left lung and half on right, i was out of work 7-8 months and was always so tired all the time and sore, however at the time the doctors kept telling me that they didnt know much about sarcoidosis but that it shouldnt hurt??.... Anyway time went on and i became better back to work and got on with life.

In October last year on holiday in America i got sudden bad pains in my stomach after 3 days of arriving there, i ended up going to doc and he said it was prob an ulscer, the pain lasted the rest of my holiday. When i arrived home i went to my GP who sent me for a scan on my stomach, where there were 2 liasons found on my spleen, GP called and said could be two things Lymphoma or sarcoidosis, but still not sure about stomach, went on for weeks, but with the news i moved back home to Ireland in the December.

Since then after aload of tests and biopsy on my spleen i have sarcoidosis but now there are several liasons on my spleen and are measuring about 1.5cm also it has spread to my liver. In the mean time i have also 3 lumps that have been growing under my skin next to my shin bone which is causing my leg to feel very tired and achy, when i told the doc he said that i have to wait to speak to the speaclist (who i am still waiting to see) and go from there.

I am still out of work as the pain is very unpridictable and some days i walk with a limp because of the constant pain down the left side of my body. I am tired and low in energy, has anyone got any tips, or experiencing anything like this. I have some tips..... try eating as much green veg and tumeric , also garlic, anything that is an anti inflammatory as this will help reduce the tightness in the area where sarcoid is lying.

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7 Replies

  • Posted

    Hi Amanda, Ii hope your consultant gets you assessed soon and gets you on the road to remission and hopefully recovery. 95% of sufferers will recover, this website is mostly populated with people who are either new to the diagnosis or chronic sufferers. We all have snippets of information which is really helpful when you are going through tough times. Keep a positive attitude, if you come across Ailsa June on this site read all her emails she is a font of knowledge. Good luck we are always checking in here to see how eveeryone is doing.
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    • Posted

      Hi Helen thankyou for your reply, I will look out for Alisa. I really wanted to talk to people about this, get ideas and even the small bits of info are great. I will be keeping posted.
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  • Posted

    I've just been diagnosed with Sarcoidosis and I'm three weeks into steroid treatment. Your advice about food ie: green vegetables, garlic and tumeric for anti-inflammatory purposes I will try, maybe make a soup, should taste nice???! Thank you
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    • Posted

      Hi maria, I had it on my lungs before but I didnt want to take the steroids because I was worried of the side effects, this time round it is taking so long to even see the specialist that I decided to research and see if there was anything else I could take. With thegreens i juice them. Kale, spinach,pineapple, cucumber, mint. Tates delicious
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    • Posted

      I also take tumeric , garlic, clove and vit c, they will all help but you have to take them every day. Kale and spinach is great because full of anti oxidants and sarcoidosis is an auto immune disease, I dont eat processed food, and not to much carbohydrates. This helps my pain as its on my spleen andnot getting to bloated from these foods is really helping. Soups are great too , water base soups or stews. Where is your sarcoid? Also I drink detox water, cucumber, mint , lemon, ginger tastes great to make a jug and put in fridge.
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  • Posted

    Hi Amanda, Thanks so much for the advice.  I eat a good healthy diet anyway, lots of homemade soup and home baked food.  I will definitely take on board your advice and try those! 
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    • Posted

      Hi maria

      So since I last posted I have since been told it has spread to my lungs also. I have now been given steroids to control the spreading as its now chronic. I am in my first week.

      How are you getting on with them, did you have any major side effects.

      I still eat well and have to say has helped alot.

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