mild sarcoid

I'm sorry to hear that you have been unwell and have now been diagnosed with Sarcoidosis. At least it is better knowing what is wrong as they can keep an eye on you and offer treatment if necessary. It doesn't matter if it is mild or not it still makes people feel awful so please don't think you are any less important than someone who has a bad case of Sarcoidosis. 

Sarcoidosis is to do with your Immune system.This you already know but I will try and explain it further. 

Lymph fluid goes all round the body and at different points along the lymphatic system there are lymph nodes. These nodes are like little filters which sift out anything harmful. The nodes also contain immune cells these are the cells that fight infection. As the fluid flows through the nodes the germs get trapped and the immune cells kill them. In Sarcoidosis something has gone wrong with the immune cells and they seem to be attacking something that isn't there or rather attacking something that is already healthy and this seems to set off a chain of events that ends up making us pretty ill. Wherever the immune cells attack they form a granuloma which is a mass of immune cells called macrophages. (I always think Pacman reminds me of macrophages as the 'eat' the germs!) Granulomas form when there is an inflamatory reaction. For example, If a healthy person was cleaning a very dirty house and they suddenly inhaled some fungi, the immune cells would rush to the lung area and try to build a sort of wall around the fungi to stop it doing any further damage. It does this because it is unable to expel the fungi completely out of the body so it attacks and kills it on the spot before it infects the body further. So if it is doing this when there is no fungi to wall in then it is making 'walls' for no reason. Now we have granulomas being formed all over the place for no reason. These granulomas can be seen on X-Rays and CT-scans and a biopsy will show if it is a granuloma then the disease is Sarcoidosis and not TB or lymphoma.  I hope my lengthy rambling has helped explain Sarcoid a bit. Sorry if it has just confused you more.

As Morag has already said sadly little is known about the disease but with all immune system problems comes a host of other problems. Not surprising when you think about it. The immune system runs throughout the body and is supposed to protect us but instead it is attacking us! It's a bit like having a traitor in the ranks!

I have the chronic systemic Sarcoidosis which simply means it affects a lot of different things like lungs, skin, joints, nerves etc but like I said before it doesn't matter how it affects you, it still leaves you feeling very unwell. Hopefully they have caught yours before it attacks anything else but make sure you get plenty rest and try to keep any stresses under control as it is thought that stress is one of the key features of increased sarcoid symptoms.

The fatigue is the bit I hate the most. I can literally fall asleep sitting up. I cannot prevent it. If you get like this then please don't drive. That goes for anyone reading this. We are not talking about simly feeling tired. This is a fatigue like no other, where you cannot control it and just have to lie down and sleep. Yesterday was a good example for me. I couldn't get up until after 10.00am because I kept falling asleep. By 12.00pm I had already dosed off in my wheelchair (I now have to put the safety belt on as I've fallen out too often). I woke briefly, turned on the TV then turned it off and fell asleep again. At 5.00pm I woke up wondering where I was and what day it was! 8.30pm tried watching TV eventually gave up and went to bed around 10.30pm.

I know most of the people on the forum still work and must really have to push themselves to get through the day. I feel so embarrassed that I struggle so much to get through a day and I take my hat of to all of you who push on regardless. I doubt any employer would want an employee like me who constantly sleeps on the job!

Having 2 seperate auto immune problems really sucks, Kelly. You must be wondering which one is causing which symptoms. That must have been so painful to have cellulitis in your breast. The lymph node pain is terrible I know. I also had it in my neck and it reminded me of having mumps when I was little.. My lymph nodes are not as bad as they used to be, thank goodness. My doctor is trying to reduce me down to a manageable amount of steroid which I will have to take for the rest of my life unfortunately but better that than Sarcoidosis.

You keep your chin up and hopefully you will go into remission quickly.

Best of luck,

Kindest regards,

June

I have also been diganoised with Sarcoid. I have it in my eyes,lungs,and skin. Its terrible disease a lot of people play it down butI suffer everyday. My vision is gettng worse everyday.Doctors have had me on every medicine they have for Sarcoid, and it doesn't work my breathing is terrible I have severe headaches, have to sleep sitting up,have itching skin, severe back and joint pain. No one knows what causes the disease and no one have a cure for it. I suffer a lot but I also trust God through everything. I am also on depression meds because learning i could completely loose my eye sight at the age of 47 is scary. I can't go out with friends unless i wear shades and a mask because my eyes are very senstivie to light and any kind of smells makes it hard for me to breathe. I wish you all the best and my wish is that doctors and other's stop down playing this disease because it is a terrible disease to have