Pulmonary Sarcoidosis: How are you dealing with it?

Posted by bboxer @bboxer, Dec 25, 2016

I’m very interested in creating a discussion group with other patients being treated for pulmonary sarcoidosis and how they’re dealing with it. I was diagnosed ~ 10 yrs ago and it is unfortunately gradually getting progressively worse spreading from my lungs to other parts of my body. I’m mainly interested in what others have received for a prognosis and most of all how they handle the, at times, somewhat debilitating pain (primarily rib cage) that goes along with it.

@chesneydell1965

Riverotter
I just read your post, I’m so sorry how this nasty disease has ravaged you.
My husband has both sarcoidosis once DX like you said it spread to his feet and neurosarcoidosis
You spoke of stages of sarcoidosis. Could you explain. Or send a link we have not heard of this yet.
The heart doctor has cleared him said no heart issues. Lung doctor says minor changes nothing to worry about. But he still has this chest pain the keeps him in pain in bed. Any ideas as to what this could be ?
Tammi

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Hello. Boxer, Sorry it has been a while since I was able to write back, i have many complications since we last wrote. I meant to tell you and other people who are seeking more answers regarding Sarcoidosis. There is a fantastic website that is strictly designated for this horrible unanswerable virus. The site is Team Inspire.com, it site is world wide, you will be surprised at how far reaching this crazy, don’t know how, why or where, I could’ve come in contact with this illness. Give it a try, maybe some answers you have & im sure there r plenty, might be answered. I open all doors, where I could possibly find a answer, or some new information regarding an illness that many people are being Dx with. Some answers are very helpful and some are not, some r happy, and some are sad. But that’s a reality people who have this type of virus must come to terms w/ some of us will go into remission, but unfortunately there are those that don’t. I do know one thing is sure STRESS, will bring any Sarcoidosis that’s in remission to start to ravage our bodies again, & again, only each time it comes back it’s WORSE. One of the hardest things a human being can try to do and that’s avoid stress, not these days. So what r our other options, some r in a constant battle w/ pain, some get so depressed b/c they feel very alone & a burden to their love ones, some r able to get in a few minutes here n there of stretching, or walking, but tire easy, and then there r those who breeze thru this virus w/ no problem or care in the world. I have met both types. Thru talking and reading about different levels of Sarcoid, is a very good thing, we learn about how other people r dealing with this at different stages.
Sometimes it’s the unknown that scares us the most, I know it scares the heck out of me.
And I’ve been thru the ringer & back again, & it’s not any thing to laugh about.
You will find that the Team Inspire.com page has a lot to do with the Mayo Clinic, the Mayo diet is strongly encourage, helping us to learn how to cope with all the things that come from Sarcoid. It’s a great benefit that these 2 websites r available to us, we meet, learn, cry, laugh, share, understand, and feel better. We also see that we r not alone, and everyone tries to help each other cope. Well now that I’ve said a mouth full. LOL
Please keep in contact, as I would love to know how everyone is doing, and at anytime you might need to have a shoulder to lean on, or a ear to listen, or to hear a good joke, and laugh a little I’m available. Please don’t be shy,
Everyone please feel better, &. Stay safe
Mo

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@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it’s like, not even my family.
All Alone,
Karen

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Dear clay, U R NOT ALONE, I know it’s a lot easier to say than do. But believe me u r not alone. Everyone goes thru the trials & tribulations of every day LIFE. Some of us more than others. There are many programs that help people who truly need it. This crazy virus is not in your head at all. You have been thru a lot, unfortunately Sarcoidosis starts to react to the Stress ur body goes thru when dealing with such tough situations, that you have had to endure. You really need to open up a line of communication with someone, you feel comfortable with, family member or a friend. You are a young widow, and this Dr needs to be more understanding, instead of making comments like that. It only shows his ignorance
and well, lack of knowledge about Sarcoidosis. I don’t know where u live but there r many Drs. Who take on patients who r on disability. U should also make an appt. with a Pulmonary Specialist who knows about Sarcoid, you should also ask him if knows of a good Dr. u need to find one. I am so sorry, u have to deal with so much by yourself. We all need a good support system, if it’s not family then friends old or new, could be very helpful. U know u don’t say if u have any children. If u do, and their older they could be a great support, we as adults, don’t give the young ones a chance, they have a different way of looking at certain things going on. We just have to be careful, as sometimes their ideas could be quite outlandish, but they will most definitely make u laugh. Thru the tough times & thru the bad.
If u you like you could write me & we could be pen pals, I promise you I will write you back. No doubt, no one should feel or be alone, it’s a horrible feeling. Remember it’s always good to meet new friends.
I hope you start to feel better soon. Remember you can write, anytime, I have insomnia, one of the pleasures of having Sarcoidosis, LOL
Mo

,

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@ryman

The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my lungs years ago, none of my doctors said anything about sarcoidosis. But now I have lesions in my brain. I am concerned it may be neurosarcoidosis. I am having a spinal tap Tuesday. I expect this will provide some answers. I did not realize this was such a serious disease. All I had read before seemed to play it down. I am so sorry for what some of you are going through.

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That’s how they found neurosarcoidosis on my husband was a spinal tap, he has seizures everything has changed including he gets mean and moody, smells and food has changed

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@chesneydell1965

Riverotter
I just read your post, I’m so sorry how this nasty disease has ravaged you.
My husband has both sarcoidosis once DX like you said it spread to his feet and neurosarcoidosis
You spoke of stages of sarcoidosis. Could you explain. Or send a link we have not heard of this yet.
The heart doctor has cleared him said no heart issues. Lung doctor says minor changes nothing to worry about. But he still has this chest pain the keeps him in pain in bed. Any ideas as to what this could be ?
Tammi

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Thank you. I try to learn as much as I can about any condition I have. I expect to find out soon if I have neurosarcoidosis.

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@ryman

The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my lungs years ago, none of my doctors said anything about sarcoidosis. But now I have lesions in my brain. I am concerned it may be neurosarcoidosis. I am having a spinal tap Tuesday. I expect this will provide some answers. I did not realize this was such a serious disease. All I had read before seemed to play it down. I am so sorry for what some of you are going through.

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I get very odd smells at weird times. Coffee making at 3 AM, flowers, cigarette smoke. I have noticed,too, that I am getting rather cranky lately. I am alone most of the time so my poor cat has to listen to it. Well, she just goes upstairs and sleeps. That is something I do a lot of during the day, could fall asleep standing up, but can’t t sleep at night. My husband was sick for several years before he passed, mostly from strokes and diabetes. I wish you both well.

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@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it’s like, not even my family.
All Alone,
Karen

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Tysm Irene. I see my pulmonary doctor on Wednesday, May 3rd. I will definitely talk to him about my concerns.

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@ryman

The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my lungs years ago, none of my doctors said anything about sarcoidosis. But now I have lesions in my brain. I am concerned it may be neurosarcoidosis. I am having a spinal tap Tuesday. I expect this will provide some answers. I did not realize this was such a serious disease. All I had read before seemed to play it down. I am so sorry for what some of you are going through.

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Your smells might be just before a seizure

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@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it’s like, not even my family.
All Alone,
Karen

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Good luck!

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@ryman

The neurologist I have now is looking into my sarcoidosis. After having nodules removed from my lungs years ago, none of my doctors said anything about sarcoidosis. But now I have lesions in my brain. I am concerned it may be neurosarcoidosis. I am having a spinal tap Tuesday. I expect this will provide some answers. I did not realize this was such a serious disease. All I had read before seemed to play it down. I am so sorry for what some of you are going through.

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I pray for you that you don’t have neurosarcoidosis it kills me watching my husband .

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I am 48 , I found out that I had sarcoidosis in 2006 it was pretty bad , but as years went by my doctor could no longer see sarcoidosis from my x-ray as if I never had it but my pain today says other wise I decided to see another doctor just to make sure nothing has gotten missed wish me luck

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Hello @lizwood49,

Welcome to Connect. We’re so glad you decided to join us, and to seek a second opinion as well; we have to be our own advocates, especially in matters of health.
Do you have any questions about your upcoming appointment? Let us know; we’re listening.

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@clay1969

I am a 51 yo widow whose husband died of a rare muscle disease 3 years ago. After his death, I was dx with Sarcoidosis. I have so much pain and breathing problems. The ER said the CT Scan revealed that it is progressing. When I returned to my PCP, he asked me if all my symptoms were in my head because I am also Bipolar. It has been rough. It is hard supporting myself. I am on disability, but I work part-time to pay for medical bills and medicines. This is wearing me down. Nobody knows what it’s like, not even my family.
All Alone,
Karen

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I would love you to write. My family and daughter aren’t there for me. Especially my 27 yo daughter. She has enough problems of her own. Please contact me here or by private message.

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