So Cruel When It happens

linusbert

Senior Member
Messages
1,720
Interesting! What I found different this time was that as I tapered off I began to feel as if the ME had switched off, too. But now, down to the last week at 5 mg, I am fully back in PEM with increasing pain levels.
i had something similiar when i went of the glucose. i had 70g per day divided in multiple drinks over the day. tampered of by 5-10g per week. when i reached 20-25g per day i felt best , then replaced it to 0g and then things went a bit unwell again.
(i replaced glucose with rice bread in same g carbs per 100g... now i am switching again, this time replacing rice bread with potatoes)
 

Dysfunkion

Senior Member
Messages
594
I don't see why not. If a chronic disease is due to a certain biological pathway not working properly, and adding a chemical can correct that, I see no reason why the results can't be dramatic and immediate. My ME certainly appears to switch on and off rapidly. I had a neighbour who switched overnight from a long period of abnormal anger back to mild-mannered overnight after one selenium supplement tablet. Some chronic diseases may involve structural or cellular damage that take significant time to reverse, but that doesn't mean that all chronic disease must be of that form.

Then you have cases that may be a mix of both like I suspect with me. I am one of those extremely sensitive to all supplements people myself and am one of the "switchers". One of the most common things I've observed over the past year with my reactions to everything I tried is that there is some abnormal immune chain reaction going on and introducing a new supplement even if I tried it before can feel radically different at a different time depending on how it alters it and will give me a new baseline with a somewhat different symptom presentation. It can be a real roller coaster.
 

Wishful

Senior Member
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6,407
Location
Alberta
But now, down to the last week at 5 mg, I am fully back in PEM with increasing pain levels.
While there's no reason to expect it would work the same for you, the reason I didn't try strongly for more prednisone after the second prescription was because I found that cumin was just as effective. Just as effective, cheaper (bought a big bag from the bulk section), no need for a prescription, and no known scary side-effects. Unfortunately, after a few weeks of a daily spoonful of cumin, I had to accept that it was no longer working. The important part is that I knew there was some way to switch my ME off (although I didn't know about ME at that point) and that three (iodine worked too) completely different chemicals managed it, so I just had to find the right one and a way to make it keep working. Still haven't found that.
 

Wishful

Senior Member
Messages
6,407
Location
Alberta
there is some abnormal immune chain reaction going on
A lot of people seem to like to think of ME as involving some really simple, isolated system: a virus hiding somewhere, or not enough of one molecule produced in mitochondria, or low blood flow. Instead, the body is composed of a vast number of systems interacting, and ME involves or is potentially affected by thousands or millions of subsystems. For one person, maybe the gut microbiome is involved, possibly in several separate ways. Another person was born with a slightly different blood vessel arrangement, and might be sensitive to blood flow modifiers. Another person has their blood vessels differing from average in the opposite way, so they respond the other way to modifiers. I don't have much hope that researchers will discover the root cause of ME by studying symptoms or responses that only affect a fraction of PWME, especially ones where different people have opposite responses to treatments. I'm a lot more hopeful about new discoveries and technologies, such as the recent one about certain bits of DNA affecting rare types of t-cells, causing some diseases. We need that "everyone with ME has this abnormality" discovery.
 

belize44

Senior Member
Messages
1,811
Updating this. I am still severely crashed. When I was down to 5 mg a week, I foolishly just stopped after one dose at 5 mg. Ever since then, I have been bad off. I even had a fall, being too weak to stop myself when I lost my balance. I suspect my adrenals have quit, since I didn't taper properly when I stopped the Prednisone.

Does anyone know of a supplement that will help the adrenals get back into action? I might be wrong about the reason, but if it is my adrenals that need help, I would appreciate some suggestions!
 

vision blue

Senior Member
Messages
2,000
Coukd you just have been in a transition from too much if something to too little of something and it had to cross the. Juuuuust right spot in transit?

My guess is you would have crashed even if you did nothing in your goldilocks window

Edit: just read your last post
Have you considered alternating days-one with steroids one without- provide what you need until your body can oroduce what it needs on its own
 

belize44

Senior Member
Messages
1,811
Edit: just read your last post
Have you considered alternating days-one with steroids one without- provide what you need until your body can oroduce what it needs on its own
I might just have to try that.I am literally sleeping ten hours, then getting overwhelmingly sleepy around eight in the evening and falling asleep on the sofa. When I wake, I feel really weak and exhausted.

Has anyone tried Rhodiola for adrenal fatigue? Or any other supplements?
 

Violeta

Senior Member
Messages
3,415
I might just have to try that.I am literally sleeping ten hours, then getting overwhelmingly sleepy around eight in the evening and falling asleep on the sofa. When I wake, I feel really weak and exhausted.

Has anyone tried Rhodiola for adrenal fatigue? Or any other supplements?
@belize44, are you doing any better yet?

And there is a website that has a lot of information about adrenal fatigue.

One of the doctor's supplements has Rhodiola in it. Also, he recommends B5 and vitamin c. Reishi may help you with respect to having come off of prednisone.

https://www.drlamcoaching.com/adrenal-fatigue/
 
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belize44

Senior Member
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1,811
@belize44, are you doing any better yet?

And there is a website that has a lot of information about adrenal fatigue.

One of the doctor's supplements has Rhodiola in it. Also, he recommends B5 and vitamin c. Reishi may help you with respect to having come off of prednisone.

https://www.drlamcoaching.com/adrenal-fatigue/
I was slowly improving but am now crashed again. But this time I think I know the culprit! My rheumatologist started me on Humira. I can't wait for this crap to leave my body! It seems to be having the same effect that the Prednisone had, causing shortness of breath, weakness and excessive fatigue. Back to the drawing board, wherever that may be.

PS Thanks for the link! I will check it out.
 

Mouse girl

Senior Member
Messages
600
Having some energy one day and then crashing is basically the illness. If you do stuff, you crash, if you don't do anything ever, you slowly get worse, so better to just try to do what you can without getting too crazy, helps you feel more alive.

The adrenal theorys are just bogus, they are sort of low rent angles spouted off by alternative docs looking to hock suppliments. Unless you legitimately have some adrenal illness that requires meds etc, going down that road will probably make you react to the supps or do nothing. Best with this illness is to try less and save your money. I think you said you had steroids, those really made me sick too. This is a hard illness, it's frustrating and incredibly hard to get used to and then it's still hard but it does get easier to deal with as you get used to the ups and downs. I really hope you feel better soon and can do something nice for yourself. I really hope you can have some fun or smiles or a little peace, this illness is so hard. I really feel for you, hon. And as always, ignore anything I suggest or say that doesn't apply or work for you, take what works and through the rest away!
 

linusbert

Senior Member
Messages
1,720
The adrenal theorys are just bogus
i believe in our cfs state, at least i can see it on my body, every organ system seams to struggle, its doing something, but not optimal, but also not to worse as the casual diseases for those organs would trigger the doctor.
 

belize44

Senior Member
Messages
1,811
@Mouse girl; I agree. I have had so many practitioners unload pricey but useless supplements on me, then act surprised or offended when I have nothing positive to report. This illness requires a fine balancing act on a daily basis.

Yesterday I had a forbidden cup of coffee and surprise surprise! I felt great. If I do it again today, I will probably crash, lol. It's been a long time since coffee affected me the way it does for normal people. That was a special treat, at least.
 
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