They found something growing in the lungs

[HABS93]

@HABS93 --Seriously sorry to hear that things have gotten worse! Do you have a community like this one that is dealing with sarcoidosis? Any ideas or directions to pursue from others who have it as well? I know that overload though---you read and read and try to decide what you are going to do and you do it and feel like maybe you have a shot at feeling/getting a bit better and then....nothing. Or worse. I know that need for a break from being hopeful and engaged which seems to follow disappointment.

But in all likelihood it will return--you are a fighter and you have so much life to live. Don't let your doctor off the hook! And if you feel up to it, let us know how it goes.

Thank you. I just think you hit the nail on the head. The only good news I've learned is that with chronic sarcoidosis and not acute(That's a different type). Fatigue is being caused b cause my lungs are working properly. Enough research shows it's multifactorial but mainly due to the lung aren't absorpting enough oxygen. Which litearly would describe the chronic fatigue , brain fog , heart palpitations .
Went to the sarcoidosis forums for the protocol which I won't due because it doesn't make sense like lots of " autoimmune cures * . The sarcoidosis Reddit is a ghost town and the one guy was like.oh yeah it goes away quick didn't even feel symptom's. He had acute sarcoidosis not chronic. I actually learned more from this community about it then there actual community for sarcoidosis lol..

 

[HABS93]

@HABS93 - thank you for keeping us updated! Let us know what you out find out if you're up to it - and I think @Jyoti has a great idea about a possible on-line community for sarcoidosis. It seems that patients very often have to lead their doctors! Take care --

Just realized I answered your question in my last post forgot to tag you. I appreciate your concern it makes me feel better. Prednisone is causing some bad mood swings.

 

[Mary]

@HABS93 - Sorry to hear the prednisone is causing bad mood swings - it ain't fair!

 

[YippeeKi YOW !!]

there's a sarcoidosis clinic which specializes in it so I'm going to ask to get referred there.

EXCELLENT!!!! I think you need better guidance and information from your treating Dr.

Please please let us know how that goes, yes?

 

[HABS93]

I'll let you know as soon as I find out what happens there. Maybe specialist have a better idea of whats going on but chronic sarcoidosis is a challenge

 

[HABS93]

Soo the prednisone actually has reduced the granulomas by half !! I can start to reduce the medication abit . My lung capacity is 13% above average and my doctor is still wondering why are you have deep breath problems and fatigue . What bad luck sarcoidosis was just some random disease but wasn't causing the symptoms so back to square one and to work and dealing with these symptoms 😒

 

[Jyoti]

Oh @HABS93, I am so glad that the granulomas are shrinking. This is great news. And I assume that at some level it really matters that the sarcoidosis is responsive to treatment. But to find that you really DO belong here on PR is, well, a mixed curse. I so hoped that this diagnosis and treatment would lead you back to good health and work and fun with friends. That at very least, you had gotten an answer, which is something precious few of us end up with. But you got one, and even though it wasn't great, there was a path forward. So it seemed.

And now this--'getting better' and not really getting better. Sarcoidosis improving, but life....not. This seems like a particularly cruel detour from the ever-joyful ME/CFS highway.

I actually learned more from this community about it then there actual community for sarcoidosis lol..

It is interesting that you say this.... I have a friend who has been a high level cancer researcher for decades and he was blown away by how much the ME community knows and understands about our illness, particularly as compared to communities of people dealing with cancer. He said it was virtually night and day. Of course, we are left with poor choices: figure it out ourselves or wait. And wait. So...back to square one, as you said, but with a bunch of really smart people, who also happen to care about each other.

 

[YippeeKi YOW !!]

@HABS93
It's been a little while ....how are you doing? Anything new on the treatment/dx horizon?

Sending you affectionate hug and any support I can offer ....

 

[HABS93]

@HABS93
It's been a little while ....how are you doing? Anything new on the treatment/dx horizon?

Sending you affectionate hug and any support I can offer ....

My sarcoidosis is half gone! So glad I stuck with the prednisone. My doctor said in a year you should feel relatively normal! Still not back at work yet. I think my brain fog is permanent so I guess I'll have to live with it but the fatigue is 100% sarcoidosis related so thank God !!
Thanks for checking up on me. I want to thank everyone on this site for the support. I also have a problem now with talking. I feel dead inside . I don't feel like talking to anyone. Even this girl I met off a dating app. We had a three hour walk and got a beer and I'm not feeling too bad at this point. Abit Shakey when we had sex but the bodies weak. After that I don't want to text her all day. This isn't like me so my question is does prednisone cause changes in personality ?
Much love from Jake everyone. I pray everynight for anyone suffering with CFS/ME.

 

[Judee]

Appreciate your prayers!!!! Praying for you too.

 

[YippeeKi YOW !!]

Still not back at work yet

Good!!! You really need time to heal, once your treatment is over, and to give your body/mind time to recuperate and rewire.

I think my brain fog is permanent so I guess I'll have to live with it but the fatigue is 100% sarcoidosis related so thank God !!

I don't think the fog is permanent. I know that prednisone is a powerful steroid, and that, and the die-off from the sarcoidosis, is probably pretty severe right now, and will continue to be thru-out your treatment and probably for a little while into recovery.

Don't give up !!!

I also have a problem now with talking. I feel dead inside

Again, see above. Your body is under serious stress right now. Ditto your brain. Talking is an overrated pass-time, particualrly when you're feeling like crap. Maybe shoot her a "Had a great time, you're terrific .... not feeling great, physically, right now, will get back in touch later...." or some such message. SHe's probably wondering what she did wrong. It would be thoughty to take her out of that particular kind of "What's wrong with me" pain.

This isn't like me so my question is does prednisone cause changes in personality ?

I don;t see how it couldn't. It screws with hormones and brain. Any changes would be temporary, so dont despair.

Thank you HABS for letting e know you were OK and things are looking up. Slowly, but generally up.

Onward and upward, eh ?? !!

 

[Tella]

My sarcoidosis is half gone! So glad I stuck with the prednisone. My doctor said in a year you should feel relatively normal! Still not back at work yet. I think my brain fog is permanent so I guess I'll have to live with it but the fatigue is 100% sarcoidosis related so thank God !!
Thanks for checking up on me. I want to thank everyone on this site for the support. I also have a problem now with talking. I feel dead inside . I don't feel like talking to anyone. Even this girl I met off a dating app. We had a three hour walk and got a beer and I'm not feeling too bad at this point. Abit Shakey when we had sex but the bodies weak. After that I don't want to text her all day. This isn't like me so my question is does prednisone cause changes in personality ?
Much love from Jake everyone. I pray everynight for anyone suffering with CFS/ME.

Hope u feel better! Was your fatigue like cfs fatigue and did u get pem? Did u have any sounds in lungs or other symptoms ?

 

[MTpockets]

Hang in there. I am sure going without optimal oxygen for so long has done a number on multiple systems so give your body time to heal before you decide how far your recovery has taken you. Also know that high doses of prednisone will also have multiple effects that your body will need to fix. So you can't discount even more improvement further down the road.

 

[HABS93]

Good!!! You really need time to heal, once your treatment is over, and to give your body/mind time to recuperate and rewire.

I don't think the fog is permanent. I know that prednisone is a powerful steroid, and that, and the die-off from the sarcoidosis, is probably pretty severe right now, and will continue to be thru-out your treatment and probably for a little while into recovery.

Don't give up !!!

Again, see above. Your body is under serious stress right now. Ditto your brain. Talking is an overrated pass-time, particualrly when you're feeling like crap. Maybe shoot her a "Had a great time, you're terrific .... not feeling great, physically, right now, will get back in touch later...." or some such message. SHe's probably wondering what she did wrong. It would be thoughty to take her out of that particular kind of "What's wrong with me" pain.

I don;t see how it couldn't. It screws with hormones and brain. Any changes would be temporary, so dont despair.

Thank you HABS for letting e know you were OK and things are looking up. Slowly, but generally up.

Onward and upward, eh ?? !!

That was very uplifting. Now that's all I have is time to heal. Work wants to know when I'm coming back but I'm only half way through this. My doctor told me is going to take a full year after it's gone to feel normal. So just one more struggle year of working and pray the body starts to see improvements.
I'm pretty certain prednisones affects on the body are also just terrible.
Just keep fogging through

 

[HABS93]

Hang in there. I am sure going without optimal oxygen for so long has done a number on multiple systems so give your body time to heal before you decide how far your recovery has taken you. Also know that high doses of prednisone will also have multiple effects that your body will need to fix. So you can't discount even more improvement further down the road.

Right ??????? My theory is that there was two granulomas size of 3.4 and 3.8 cm. Compared to inside of a lung that's massive. How can the lungs be functioning even at half the level of normal function ? Anyone who reads this with similar symptom's and disease hopefully won't have to figure this out . With lack of oxygen being absorbed in the lungs would that make the heart work alot harder and palpitate ? This is just a thoery but I can't find anything to back it up

 

[YippeeKi YOW !!]

My doctor told me is going to take a full year after it's gone to feel normal.

So just one more struggle year of working and pray the body starts to see improvements.

You Dr is basing that on a lot of stuff, including what textbooks say, what the drug company manufacturing it says, and to some degree on what he's observed in other patients on the same treatment.

He's not basing it on you, specifically. You're young, which skews in your favor, and your body and your spirit have already proven strong enough to battle thru all this without giving up.

So it may be a year, it may be less. It may be a lot less. It'll be what it'll be, and whatever that is you're up to it, and you'll come thru beautifully !!!

With lack of oxygen being absorbed in the lungs would that make the heart work alot harder and palpitate ?

That makes sense to me. THe heart and the lungs are BFF's, and very interactive, but like you, this is just a guess on my part, based on all those past years of extreme inline street skating, including uphill and curb grinding when necessary, and how my body reacted afterwards as it was catching its breath. Definite increase in heart palps, however briefly.

 

[HABS93]

You Dr is basing that on a lot of stuff, including what textbooks say, what the drug company manufacturing it says, and to some degree on what he's observed in other patients on the same treatment.

He's not basing it on you, specifically. You're young, which skews in your favor, and your body and your spirit have already proven strong enough to battle thru all this without giving up.

So it may be a year, it may be less. It may be a lot less. It'll be what it'll be, and whatever that is you're up to it, and you'll come thru beautifully !!!


That makes sense to me. THe heart and the lungs are BFF's, and very interactive, but like you, this is just a guess on my part, based on all those past years of extreme inline street skating, including uphill and curb grinding when necessary, and how my body reacted afterwards as it was catching its breath. Definite increase in heart palps, however briefly.

You are completely right. Eventually going to have to let time do it's thing. My biggest concern is I might have to move out soon as my home life is not helping my situation at all. I have some options though because of my sickness.
Hmm interesting . My heart palpitations and racing heart might be from copd which intern causes atrial pre mature beats which my heart test said where the cause. The sensitivity to chemicals though remains a mistery though.

 

[MTpockets]

Your issue with your lungs would have weakened you to the point where you may be more susceptible to things like mold or dust mites or allergies. Also autoimmune disease messes things up pretty bad.Once your immune system is on high alert it can do all kinds of strange things.

 

[HABS93]

Your issue with your lungs would have weakened you to the point where you may be more susceptible to things like mold or dust mites or allergies. Also autoimmune disease messes things up pretty bad.Once your immune system is on high alert it can do all kinds of strange things.

Is there anyways to research these weird things that occur from when these situations happen ?

 

[MTpockets]

Is there anyways to research these weird things that occur from when these situations happen ?

Sorry I'm foggy, but are you talking about researching autoimmunity? I haven't searched the topic in general. I do know that when I finally got diagnosed with celiac disease and started learning about the chain reactions that occur in my body once my immune system goes off I was shocked. One of my son's friends has ankylosing spondylitis and he has said the same thing.

Things that you wouldn't think are related are. Like his migraines are non existent when he isn't in a flare. I sleep better when I'm not in a gluten reaction. Weird little things. Less acne, or better mood, or less anxiety, less brain fog. I used to get a lot of inflammation in my finger nail beds, turns out its from immune attacks.

Actually the threads on here about MCAS have tons of good info. I don't know whether it was specific to celiac or not but healing my gut reduced my histamines and immune hyperactivity immensely. Honestly it can only help. Wasn't it Hippocrates who said all disease begins in the gut? Sorry this post might be all over the place. LOL Hope some of that made sense.