So what happens next?

So can i ask how they found out where else it was??? If they found the the lung by accident how did they find out you had it in all different places? Sorry to hear that bdw hope your not feeling to unwell x

Amd thankyou for the response x

Iv had the skin rash about 16 years and in my lungs about 10 but I only found out what the skin rash is very recently, It's called erythema nodosum, about 6 year's ago I started having really bad stomach pains and after about 5 admissions to hospital with suspected appendicites I insisted they remove them and yes you guessed it it came back about a month later so then they came up with crohns disease but never confirmed it a senior consultant said it's highly probable to be Sarcoidosis because of the pain I was in , he wanted to give me a endoscopy the next time it flared up but it hasn't come back since which is another pointer for Sarcoidosis.

As for my sinuses that's the most recently diagnosed bit to be confirmed by endoscopy.

Read up on the internet I found out alot from there

Oops nearly forgot I found out about Sarcoidosis mimicking crohns disease from the internet and just after that my bowel doc said the same thing but it hasn't come back since

Hello Peter, yes, Sarcoid and it's nasty habit of mimicking other diseases. Crohn's is but one of a very long list of diseases that affects every part of the body.

I sympathise with what you have had to put up with.

Chronic tiredness is one of my bugbears. I end up "crashing" if I over do something and can be out of it for a week, sleeping long hours at a time.

Do you get complaints from friends and family members for sleeping "inconvenient hours"? Explaining why I sleep odd hours and for long periods just doesn't get through to those you would expect some understanding from. No matter how many times you go over it.

hi, sorry for late reply, yes I get comments all the time, usually not very understanding ones, It's true what a friend said to me a while ago, if a person has sarcoidosis it's the whole family who suffers with it.

Sorry to say but I'm having a rough patch just now with my wife, the last 4 years have been really hard on all of us, I just wish I could make it all up to her,,,,,,, maybe one day

Hello Peter,

Sarcoidosis affects people to different degrees and different organs.

Maybe you should show her what other people are saying about their experiences with sarcoidosis on these sites.

It will give her an idea of how real this disease is and that you are not just a malingerer.

I have no answers to this dilemma, really.

Intolerance, especially from those close to you is upsetting and does nothing to help.

I hope you get to a level of wellness so you can do the activities a married couple should be able to do together. At the same time, she somehow has to realise you are not doing this on purpose and sarcoid can only be controlled.

Just like you, I end up apologising for the disease.

Hi again,

Thank you so much for your encouragement it's much needed right now, Im not sure if she wants to hear anymore about this horrible disease because it's turned all our lives upside down, because I still look normal on the outside I think a lot of people think there's nothing wrong with me, they don't think that I'm in pain they just assume I'm a fat lazy tw*t who sits on his arse piling weight on, they don't stop to think about the steroids I'm on or the blinding headaches all day everyday for the last four years, Iv heard people say to her there's nothing wrong with me and I should get on with it, If they felt what us sufferers go through on a daily basis I doubt they'd be so fast to judge us would they,,,

I'm so sorry to hear this Peter. This condition does take its toll on all relationships. I have a great relationship with my mother in law but since I have been unwell there have been times when I have wanted to give her a piece of my mind. She had a cough once and was chesty and she actually said, " I think I have sarcoidosis myself". It took a lot for me to hold my tongue. Since she has heard that I'm going back to work it has improved. My husband has been great most of the time but he does lose his patience at other times as its hard to explain why I am emotional for no reason. I went to counselling it helped maybe consider going and ask your wife to go. I really hope things improve for you its such an awful condition and so unpredictable.

Best of luck.

Polly

Well, how's this....

Right now, I'm withdrawing from about 8 weeks of Prednefrin.

(This is Prednisolone eye drops)

Compared to Prednisolone in tablet form, the levels of it in eye drops is tiny. Yet, it has done enough to cause the same withdrawal symptoms as I had when I was coming off 50mg of Prednisolone.

I have no energy and feel like crap, I have bouts of dizziness and have that unpleasant "rag doll" looseness in my body.

I'm also frequently running to the toilet as the torrents of urine are flowing out of me. This is the fluid I have retained since I started the Prednefrin, sometime in early October or so.

When I asked my GP, why is it, that I am going through the same intensity of withdrawal, as if I was coming off 50mg of Prednisolone.

She said, unlike opiates, where you develop a tolerance and you have to take more for the same effect.

With Prednisolone, you develop a sensitivity to it. That is, the side effects only.

It does not mean that you can take less of it to achieve a medicinal benefit.

I have put on weight due to fluid retention, I'm chronically fatigued due to the reduction in naturally produced cortisol. The withdrawal will probably go on for another 2 weeks, after that I will have to wait for my cortisol levels and my weight to go back normal.

I have work to do, renovating my work space for study, but I just cannot do so. I have no energy.

My "friends" are fed up with me, I've blocked one from contacting me after she said she's had enough of me and the sarcoisosis. Fine, I can also do without her annoyance, she forgets of course, that she uses my shoulder to cry on and and someone to sound off at, as she navigates her upsets.

Bloody hell, such is life.

Hello Polly, why am I not surprised?

Trouble is, you can't get angry at them.

They just have no concept of sarcoidosis and how it subtley undermines your very existence. For a seriously destructive illness, you look fine on the outside, unless of course you have that ghastly skin sarcoidosis.

Your eyes aren't falling out of their sockets, your limbs aren't progressively rotting from your fingertips back to your torso, yet you feel so sh*tty 24 hours/day.

Trying to explaining this, though, is just impossible.

I suggested to Peter, to show them some of the correspondence on these pages. This may give them some idea of what others are going through.

This may work.

Kind Regards, Polly.

thanks Polly, I'm willing to try anything at the minute,,,,

Hi Peter,

I feel your pain with the relationship thing. Me and my partner argue but the understanding of it is because I am super temperamental what with the illness and also the obvious ( steroids), horrible things, I think I have gotten every side effect going. My family think the same, that I'm either faking or that sarcoidosis is not a bad illness, their attitude is sickening, I was laid up in hospital with a bowel infection earlier this year due to low immune system, I was told it was very uncommon for someone to get it and that it was serious but I was made feel like I had faked the whole thing and wasn't really sick by my family.

I am tired of what they think of me I can only do what I can, I work, we have a young child, and I just live my life. If people think we are lying because we are not walking around with visible signs on our skin or missing limbs then that's their issue enough is enough for me. Just stay strong we can't let it beat us.

Hi zss,

That would be a good idea. This condition needs a voice, more recognition. I have seen on the Irish website for sarcoidosis that there are support groups but they never seem to meet.

It may sound crazy but when one is diagnosed with sarcoidosis the whole family should be spoken to about it and informed how serious it is.

Here's hoping ....

Hi Polly,

That's an excellent idea about the whole family being educated about this horrible disease but it's hard enough finding doctors who know about this illness let alone speaking to a whole family, It affects so many people in so many different ways that it would be hard to cover every problem/symptom, then there's the mental stress it puts people through,

I think to cover the important stuff it would be a week long course and be quite stressful it's self,,,,,, I could say much more but I'm having a problem thinking straight at the minute,,,,,, anyway. happy new year to everyone