Why Me?why This?

Why me?Why this?

SARCOIDOSIS is an inflammatory disease characterized by the presence of NONCASEATING GRANULOMAS (collections of inflammatory cells/lumps that do not pus)that form SMALL LUMPS in multiple organs.Most often in the lungs and lymph nodes.Sarcoidosis is an AUTOIMMUNE disease where the body attacks itself. It is among the most common chronic scarring lung disorders.It is these lumps,that cause pain.

There are many types of this disease.You can get it on your skin,in your eyes,liver,joints,bones,spleen,nerves,brain,kidneys,breasts,and reproductive organs. But it can be serious, in your major organs-your Lungs, Heart, Lymph Glands (in the chest).It can be Acute (short term), or Chronic (lasting years,or lifelong). The disease can be serious and sometimes even fatal when it affects vital organs.Many cases dont need treatment,but when treatment is needed,CORTICO STEROIDS are used.They help SUPRESS the symptoms,as there is NO cure.But the symptoms return when the steroids are stopped.

Over the years,CHRONIC SARCOIDOSIS causes coughing,and shortness of breath as the lungs become more and more inflamed and their ability to function deteriorates.

Symptoms depend greatly on which organs are affected and to what extent.General symptoms include fever,fatigue,painful joints,and an overall unwell feeling.Symptoms of sarcoidosis in the lungs include shortness of breath,cough, and chest pain.

*********************MY PERSONAL EXPERIENCE************************ THIS IS WHERE I SUFFER MOST.CHEST PAIN.I suffer everyday,all day.The pain in my upper chest,and upper back (lung area).Days are bad,nights are WORST.Cant sleep laying down,have to sleep sitting up.I have to limit what i do in a day.The more active my day,the worse the pain that night..I HATE this disease,and to think I have to live with this for the rest of my life.

Deceased actor,Bernie Mac,had this same disease.If you know anyone who has this, feel free to msg me,I'd love to hear how they live/manage with this LungDisease.

 A Disease of Pain.The doctors' say,its not a painful disease, IT IS! I live with this pain,everyday.It hurts to breathe, to live.I wouldnt wish this disease on my worst enemy.It hurts so much.Please make it stop.I dont want this disease anymore.I dont want this for the rest of my life!

 

 

LibertyBell LibertyBell
36-40, F
5 Responses Feb 24, 2009

Liberty,

God Bless you and good luck. I am now 55 years old and I had a bout of acute sarcoid dosis when I was in my early 30's. I had the feaver, every joint in my body was painful, couldnt get out of bed etc with horrible pain. The condition came fast, one day I was ok the next I was sick. I also had red blotching on my skin. Had a lung biopsy, still have the scar under my adams apple. For me the condition lasted about 4 months then one day it was just gone....Gone!!! Thank God!!

Now Im 55 and I came down with something else called Small Fiber Peripheral Neuropathy. Basically your nerves usualy in your feet, lower legs and hands act as if they are being cut by razors, with numbness, pins and needles and very hot and very cold flashes. I hope this goes away too but from what I read, it doesnt seem so and there is no treatment either except pain meds and anti depressants.

Good luck and stay strong!

Alan

I too have sarcoid mainly in lungs and lymph nodes,however, my spleen an gallbladder were covered as well. After two rounds ( currently finishing up the second) of prednisone, we're seeing it doesn't seem to be having any great affect - so I'm going to have to go to alternate drugs if my lung function gets worse again - yada yada yada. It does suck knowing that this will be a part of my life forever. I wish it would go into remission - but it looks like it's going to stay active. I have two young children and I do count my blessings that it wasn't cancer. After getting headaches n dizziness, my dct did MRI to be sure sarcoid didn't go to brain. Found i had brain meningioma ( benign) and had it removed - so it has been a wonderful two years. Some days absolutely suck and others are ok. I guess we have to figure out how to manage the symptoms so we can function. try not to think about how bad it could get and I trust my dct who is so on top of it.

Dear Dragfactor, I was diagnosed with sarcoid just over a year ago, just days before Berni Mac died. Before that I had never heard of it. I was in hospital for about 6 weeks before they could work out what was wrong. I felt like a true life 'HOUSE' case4. I understand the pain, I suffer ever day too. I was also diagnised with pulmury alvioli disease, very rare apparently. Too top that in 2002 I was diagnosed with MS. Which also causes me a great deal of pain, the doctors can't tell which one causes the agony. My treatment is to have an almost monthly lung lavage, where they wash out my lungs, great fun. They have said that any other treatment could set of one of the other conditions, making my overall condition worse. Its crap really! You sound so fed up with your pain, I can understand how you feel. I went through a long periond of depression but I finally got to the point of realising it was just making me feel worse. As you said that you would not wish it on your worst enemy so decided that I had to be strong enough to cope. I stoped being so angry (not totaly) and decided to be tough and live everyday as if it was my last. Continuing my life best I can, with lots of naps. It is actually really good to know that I am not the only one that feels the pain, always told by doc that pain is rare, does not really help. I would like to compare notes and chat to you anytime, if you want?

Thankyou Dragfactor for your story and comment.Its nice to find other people who suffer from this rare disease. Over 17years, wow.Thats a long time.Im sure 17 years ago,not a lot of Doctors' knew much about this disease.Thanks for your comment.It was very painful when I smoked (cigarettes),but I have quit,2 months ago,and it HAS helped,but I STILL suffer with the pain at night.The chest pain makes it hard to fall asleep.I cant sleep laying down,I have to sleep sitting up.Its hard to breathe.I cant do too much activity in one day,the pain gets worse,the more active I am.Its hard.Its a disease I will have the rest of my life (unless they find a cure).I hope it gets better, not worse.The pain, its hard.Hurts.Take care of yourself.

I have suffered from Sarcoid for over 17 years. although I do not suffer from painful breathing, I have significantly reduced lung capacity. I have had to give up Scuba Diving due to a cyst on my lung and have endured years of steroids. My breathing is not great. On a ski trip to Colorado, I spent 24 hours on oxygen due to breathing complications. You might say that this trip was a once in a lifetime experience for me.