Why has my PEM changed to severe respiratory, throat problems

[starlily88]

I can only do one Dr visit a week, and that is extremely difficult.
Then I have to do the Bank, Target, Pharmacy, Post Office. I squeeze it all in because I know I am going to have a severe PEM crash and not get what I have to have.

This PEM comes on 6 hours after I come home, with a severe sore throat, then turning into pre-flu or bad cold symptoms, with sinus ache, allergy symptoms, cough, and terrible feeling of my throat swelling up. And I am freezing, get chills, and it is 75 degrees inside.

I had to do my Dentist Monday. I took Prednisone to help me. Then I do my errands. I know I am overdoing, but know I won't be out for next 2 weeks.

This PEM is so severe, hard to swallow, get chills, feel like I am getting the flu or severe cold. Very hard to get sleep.
Used to be I would crash by sleeping a lot, now I can barely get in 4 hours of sleep.

This severe PEM with inability to sleep much at all - started last year with diagnoses of rare form of Thyroid disease, can't swallow, severe GERD, loss of oxygen, can't open my door to my building - became totally home bound last year. Could not drive. Since then making my bed, brushing my teeth is about all I can do.

Before I only could wash my hair once/month if that, now with the thyroid disease my scalp is so dry, I have unending itch of my scalp, eyebrows, eyelids. I have psoriasis now with blepharitis, so my days have been taken over with weekly long period of washing hair - to control the psoriasis, constant treatments to my eyes. It is exhausting. And my cognitive abilities have become severe - it is hard to remember anything now. I had none of this before my thyroid diagnosis March 2018 - this has exacerbated the ME so much, created so many new diseases.

My throat pain is so very severe, my lymph glands are swelled/hurting and sinus pain (without infection) won't stop, and nothing I do helps me. I have been to my ENT so I figure this has to be due thyroid disease not self resolving like my ENDO said it would in 18 months. My sleep deprivation is the worst I have experienced, and sleep was the one thing that got me better.
Thanks Starlily88

 

[southwestforests]

Oh dear, that's quite a bit going on.

As for the question asked by title, I don't know.
But can say that during the last year it became more and more of a thing that fatigue would affect my voice with hoarseness and weakness.
Well, hey, at least I don't have what my Dad does with his CFS/ME screwing with his ability to swallow; that started a few years ago.

 

[starlily88]

at least I don't have what my Dad does with his CFS/ME screwing with his ability to swallow; that started a few years ago.

Thanks for your response. Sorry about your Dad - has he had Endoscopy, or what is he being told to do? My rare thyroid thing - first I could not swallow most of 2018 - but my ENDO told me it was due to my thyroid being so swelled up..................................Starlily88

 

[southwestforests]

Yes on both counts. And he has to eat or drink at specific times in a specific order. Has exercises to do too.

 

[Wishful]

My guess is that ME alters your immune response in some way that causes it to release the cytokines, etc, which in turn cause the symptoms. Precisely why it would do so is way beyond my knowledge level.

You might experiment with immunosuppressants to counteract the flare-ups. Is the prednisone counteracting the flare-up of those symptoms? Maybe try a faster-acting immunosuppressant to see if that's more effective.

 

[starlily88]

You might experiment with immunosuppressants to counteract the flare-ups. Is the prednisone counteracting the flare-up of those symptoms? Maybe try a faster-acting immunosuppressant to see if that's more effective.

Thanks for your reply. I have used 10 mg Prednisone last 2 weeks for 2 Dr days/errands.
It helped me be alert but I assume it also let me overdo thus crashing so very hard.

 

[Rufous McKinney]

My throat pain is so very severe, my lymph glands are swelled/hurting and sinus pain (without infection) won't stop, and nothing I do helps me.

We share very similar symptoms. And I'm sorry you have this much going on and how overwhelming it is.

My throat gets REAL bad like instant Strep. So if I don't talk very much, I mean AT ALL, the sore throat does not come on. My voice often doesn't want to come out, a type of hoarseness. Then if slightly primed, it might come out. But then primed means: it will then turn to the Strep level pain a couple of hours later.

So for me the throat symptom can stay calm as long as I am DOING NOTHING, seeing NO ONE.

For the three months I visited my daughter and grandchild...for that three months the throat pain was just miserable. Starting at like 1:30 instead of 6:30. And failure to control / pace for the throat/ lots of other symptoms worsened as well. Many of these are backing down, now that I am mostly resting, doing NOTHING, seeing NO ONE.

A number of my symptoms are managed because I take Chinese herbs.....its not a cure...but the Sahara desert lives in my throat and tongue and mouth (and eyes, and sinus...I get the inflamed but DRY sinuses..) the chinese herbs CAN help reduce that. And as a side effect of many pharmaceuticals, this seems to be a major reason I cannot tolerate pharmaceuticals. The LDN I take does not do that thank goodness.

 

[Rufous McKinney]

Before I only could wash my hair once/month if that, now with the thyroid disease my scalp is so dry, I have unending itch of my scalp, eyebrows, eyelids. I have psoriasis now with blepharitis, so my days have been taken over with weekly long period of washing hair - to control the psoriasis, constant treatments to my eyes

I was able to clear psoriasis which has never come back, by taking chinese herbs, from an expert herbalist. This awful rash that WASN:T psoriasis was the original reason I went to this herbalist and it took ten months to clear out. Then it never came back.

I washed my hair to death due to the itchy scalp when i had psoriasis. And now i can go like DAYS without washing it: that is just so amazing.

 

[Rufous McKinney]

I was able to clear psoriasis which has never come back, by taking chinese herbs, from an expert herbalist

this is just bugging me: why did my psoriasis on my scalp go away after being there for many years? The odd thing is: this OTHER rash took over. Its like one drifted away, and a very very odd rash moved onto my legs. It was there for like 8 years.

 

[Wishful]

this is just bugging me: why did my psoriasis on my scalp go away after being there for many years?

Maybe skin microbiome changes? Maybe you took something, or encountered a new variety, that changed microbe populations in one area, which also changed them in a bad way somewhere else. Our microbiomes do change over time.

 

[Rufous McKinney]

Maybe skin microbiome changes?

Thats certainly possible...but I think most of these odd rashes are autoimmune....technically its heat (energeticlly)

 

[starlily88]

So for me the throat symptom can stay calm as long as I am DOING NOTHING, seeing NO ONE.

Thanks Rufous for reply. I have been doing nothing. Talking makes it so much worse.
I am dreading going out this Monday - I have no choice, have labs once/month.
I have 2 Dental appts for a crown, and Dr appts I have each week I can't cancel.
I am dreading going out, and getting the severe sore throat - it does feel like strep
Last 6 days I have been so sick - with severe cold/flu. This repeats each week I go to a Dr visit that I can't cancel.
Glad you got rid of the psoriasis - it is autoimmune disease so have no clue how it went away, but I also have rashes most of the time on legs - which are so itchy, end up bleeding. I cancelled my Dermatologist appt, but think this is part of this disease.
Starlily88

 

[Rufous McKinney]

Talking makes it so much worse.

Deploy Magik Wand. Wave. Bye bye.

the best thing I've found for immediate throat soothing, is elderberry syrup ...can get from health food store, and avoid the kind that might have some vinegar in it (I don't like vinegar, and it burns my mouth).

I have no choice, have labs once/month.

I'm there with yah, poised on the porch, plotting cancellations and deferments. If I "were" to successfully obtain the various assistance I believe I require, to actually keep going here, I'd be in a state of continuous recovery from a prior appointment.

Now here is a form of an appointment: I will think about the dental appointment I have on Tuesday, i will schedule 15 minutes on Monday, to contemplate that. Then: no more contemplating that.

This repeats each week I go to a Dr visit that I can't cancel.

You don't mean you get a cold or flu EVERY time you go out? It feels like we have the flu, all the time, doesn't it? Without the high fever part...just all the other parts.

I also have rashes

The leg rash here was very strange.....not a familiar rash whatsoever. My regular doctor when i showed it to him, recommended I use cortizone creame....on my ENTIRE LEGS? that stuff is dangerous.

Thats the whole problem with our allopathic western medicine. So: the chinese medicine cured the rash.

 

[starlily88]

the best thing I've found for immediate throat soothing, is elderberry syrup ...can get from health food store, and avoid the kind that might have some vineg

Thanks. Elderberry syrup on Amazon 5.4 oz about $21. Assume I can get it from Whole Foods. Some articles claim it is not good for autoimmune diseases - as it can make it more active, have you heard this? Also, do you take 1 TBSP 4 times/day, or how much do you take? Thanks Starlily88

 

[Rufous McKinney]

Thanks. Elderberry syrup on Amazon 5.4 oz about $21. Assume I can get it from Whole Foods. Some articles claim it is not good for autoimmune diseases - as it can make it more active, have you heard this? Also, do you take 1 TBSP 4 times/day, or how much do you take? Thanks Starlily88

1) I don't take it real frequently...but i had INTENDED to. So I just have a little sip if the throat is particularly bad.

2) I believe that is a 64 dollar question I'd like a good answer for: is taking herbs and things which "stimulate the immune system" bad when one has an autoimmune issues? It seems like I never get a clear answer on this.

3) seems like I had heard that some view elderberry syrup as outstanding for MECFS. So where did I hear that I wonder?

Frequently, I have medicinal mushrooms lurking, for immunity, and I wonder this about them.

 

[starlily88]

You don't mean you get a cold or flu EVERY time you go out? I

Yes this is new for me - August, Sept, October this started - but especially in last month. Yes I always have swollen lymph glands, but I don't get this severe cold/flu after Dr. Appts, and severe sore throat that feels like Strep. I overdid end of August for reunion. Crashed most of September. Now any Dr appt which I follow with getting my meds, errands - ends in severe sore throat 6 hours after getting home, then getting severe cold/flu.

 

[Rufous McKinney]

Thanks. Elderberry syrup on Amazon 5.4 oz about $21

8 oz, without sugar and without vinegar...is around $12.00 Swansons.....

I don't use Amazon, if I can avoid it. They don't pay taxes.

 

[Rufous McKinney]

then getting severe cold/flu.

Well, that is quite unpleasant. There have been times when the throat is particularly sore and I misread things and I thought I was coming down with a cold or something. (so then, I take my chinese don't get sick YinChaio pills).......and didn't get it.

Clearly you need to rest more from this overdoing you described...more time to recover from that. Gosh gee.

 

[Wishful]

3) seems like I had heard that some view elderberry syrup as outstanding for MECFS. So where did I hear that I wonder?

Elderberry makes my ME symptoms very much worse. It seems to be a very strong immunostimulant for me. Since ME screws up our immune systems in different ways, it could be beneficial for some people, and a disaster for others. So, I recommend caution with elderberry.

 

[Rufous McKinney]

So, I recommend caution with elderberry.

Thats good to know, based upon your considerable experience.

I take a sip to sooth my throat but not that often.

I'd like to get a clearer idea of this one issue...does taking immune stimulating herbs, cause more PROBLEMS than it fixes.

Last night I was just thinking: what if we could somehow fund three full time doctors who do nothing but answer our questions.....We could just march thru a huge series of issues and topics and share symptoms and recommendations. Then only 22 milliion possible people would submit questions.