I was diagnosed with sarcoidosis last May. I think I had...

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I was diagnosed with sarcoidosis last May. I think I had it for a long time and did not know what it was. I ended up in hospital because all my joints ceased up and I could not look after myself. I also had heart palpitations, chronic fatigue, sores (granulomas) on my shins, the feeling of grit behind my eyes, headaches ete. I had a brachioscopy and lung biopsy that finally diagnosed what I had. I am 28 years old. It is so frustrating and scary to be so tired all of the time. There are things I want to do that I just cant at the moment. I have to see an eye specialist as my eyes are bad, I am afraid for my sight. I have sarcoid in my eyes, joints, skin and lungs. I have been on prednisolone since May. This has caused me to gain a stone in weight and Id swear my face is getting hairy. It also gave me a stomach ulcer so I am on nexium for that. Sometimes I just feel so alone. Nobody understands when you say you have sarcoidosis. I think people think Im lazy because I am so tired all of the time. I used to love kayaking and cycling, now climbing the stairs is like getting to Everest base camp. I dont think there is a support group in Ireland, if there is I cant find it. If anyone wants to email me to talk, I would like that. Im finding it hard to get used to the idea that I will have this condition for life. Lindasad

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  • Posted

    Hi Lynda

    I know how you feel been through hell and back I was 28 when I was diagnosed and I thought at one point I was dying. (Read my comments 25/10/06)But there is hope out there with the right treatment you will get better.

    Tracey

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  • Posted

    smile Hi Linda

    I do not have sarcoid ,but I do have Pulmonary Fibrosis & many other \" autoimmune diseases \"

    I am ,much,much older than you but I do know how you are feeling . Having to cope with these disabilities at my age is bad enough ,but for a young woman like yourself suffering with them ,it must be terrifying .

    But you will learn how to cope with them ,Go on message boards where you will find lots of young people experiencing the same ordeals as you ,& if you can find a support group with people that you will be able to relate to ... It will make a big difference in how you manage your illness .

    (((( hugs ))))

    Brenda uk

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  • Posted

    Hi there, i really need to chat to someone about this. I'm 26 and have come back from the doctors today with what i thought at first were painful bites around my shins and ankles, im mortified to be told i may have Sarcoidosis. Had a chest x-ray this afternoon and so am waiting the results- feeling really scared. My legs are so painful :-( I have also had an aching neck and shoulders last week which i am told now is prob all connected with this. If i am diagnosed with this have i got it for life? on medication for life? and do these painful lumps on legs return often??
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  • Posted

    we know what you are going thought it is awful what happens to people with sarcoidosis unless you have it no one know the pain you go thought. my hubby has it in his spine and cant walk he is wheelchair bound and in a lot of pain. still having test so he is on no medication yet. we wonder if he will walk again it will be really awfull if he cant

    thanks elaine

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  • Posted

    Linda,

    You are in my prayers. I was diagnosed in May 2007 and have often wondered how alone I was. The more I learn, the less I know about this bizarre and little understood disease.

    I recently attended a patient conference in South Carolina (Foundation for Sarcoidosis Research - ****) and was surrounded by over 100 attendees with the same problems. Finding people that understood, doctors that knew how to treat and hearing them talk made me feel so much better. I will be starting a Sarcoidosis Support Group here in Raleigh, NC, so I can pass on the great work and help people feel less isolated.

    I hope you can find a support group, or maybe create one to build your own understanding. If you need someone to speak to, people to ask questions of, reach out. You are not alone, and there are many that want to help.

    [color=green:d1e095f672][size=9:d1e095f672][b:d1e095f672][i:d1e095f672](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

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  • Posted

    Hi,

    I've just been confirmed as having sarcoidosis today. I am also on steroids. Tired and glum.

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  • Posted

    Hi i have had sarcoidosis for 6 years now and think i had it for long before that i also felt tired. No-one seems to know what it is (including me until i got it ) so people just brush it over not being sure they can't say anything that helps so i think they just don't say anything.

    I have been up n down since i got it at 25 its just something you have to deal with just let it get you down. Just got 530 on my peak flow metre thismorning so im happy with that :D

    Take care

    Jamie

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  • Posted

    There is light at the end of the tunnel !!! I had sarcoidosis when I was 26 yrs old. It started in my feet and proceeded to make its way right through my body, the pain was unbearable & even though I told them that my grandfather & father had both had the desease they just kept saying that it wasnt passed through the family. Yeh right !!! 8 weeks later they announced that I had sarcoidosis and started a high dose of steriods when it went into my spine and threatened to crush my spinal cord. I am now 47 yrs old I had a cataract in one eye when I was 30 & I became diabetic but they didnt know if it was down the sarcoidosis, seroids. or just naturally occuring. My pain stopped as soon as I started the seriods I thought I could have run a marathon but the reality was that I was a weak as a kitten, but pain free. It took about 2 yrs to get back to normal, breathing was hard if I done too much, but I have no pain or symptoms now and it has never reoccured. Hang in there it will get better.
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  • Posted

    heye linda im josephine everyone calls me jo,jst reading ur comment on ur condition sarcoidosis.i also have d same condition.i have it in my lungs also.i was diagnosed wit it wen i was in my twenties and i am 43 now it has got worse in d past 2 years.i am living in ireland.if u wud like 2 reply bak please do.hope 2 hear frm u.jo
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  • Posted

    I understand how you feel, I was diagnosed last June 2016, and my world has been turned upside down. I was also a very active person. I cannt comes to turns with it. I'm so tired all the time.

    I have it in my lungs, back off eyes, brain nervous system and lymph nodes.

    Many sweety moments. I hate it, troubles going to the toilet both ways.

    Yes on plenty off drugs but again never took tablets before now on that many. My back in pain all the time. You never seem to get a brake .

    You arnt alone its a condition not known much about. But I'm here to chat if u need too.

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