Does anyone with CFS get back to 100% ever?

[Gingergrrl]

But they did do TSH, which was 11.02, which is the highest it's ever been. This was late 2018.

That is actually an extremely high TSH and much higher than mine has ever been. I started taking Armour in 2013 and if I had not started it and let the Hashi's go unmedicated all of these years, I do suspect that my TSH would have gone that high b/c right now it is staying between 3-4 with the Armour and my Endo would like it to be between 1-2. I know you are certain that your thyroid is fully recovered from the anti-virals and that Hashi's is reversible (and maybe it is in your case), but I hope that you will continue to monitor your thyroid labs in case the TSH start to go up without your thyroid med in the future.

No, I know. When I said "all I can say is that for ME", the "ME" was for me, myself, ME... not Myalgic Encephalomyelitis, lol. I was just capitalizing "me" to put emphasis on the "me".

Thank you for clarifying and I misunderstood and when you said ME, I thought you meant ME/CFS not "ME" as in you.

That said, for myself and my own case, gluten has played no role in my CFS or thyroid problems. I have zero food or dietary sensitivities. Though I have no doubt gluten can negatively effect others.

I don't think I explained the gluten issue well and it is never the cause of Hashi's. The issue is that in people who already have an established diagnosis of Hashi's, then eliminating gluten can slow down the autoimmune attack of the thyroid. It might not change the autoantibody levels, and it might not improve day to day symptoms, BUT it can slow down the autoimmune inflammatory attack of the thyroid over the long-term. It has nothing to do with food sensitivities. If you no longer have the Hashi's autoantibodies than it probably isn't relevant for you any way.

Yikes! So much for motivational comments

I think we just have a different opinion of what is a motivational comment.

Um, why are you yelling at me...

I was not yelling at you. Yelling on-line is posting in all CAPS (which I never do). I also don't yell b/c it is not my personal style of communication and it is not even effective (and when someone starts yelling, others usually stop listening). It was not at all my intention and I was just explaining my personal background and situation.

If you really did read all my threads, you'd also see how I talk about mild and severe cases. I'm mild. And that I believe severe and mild cases are two totally different things.

I definitely have not read all of your threads but I have seen many threads like this one in which you seem to imply that if everyone else only did what you did that they too would have 100% recovered. If you are now acknowledging that there are mild and severe cases (of most illnesses not just ME/CFS or Hashi's but in general) and that not everyone will recover to 100% like you did, than this is much more respectful toward others who might be severely ill or might have been sick their entire lives.

I feel very very very very bad for you ok? I truly do.

I wasn't looking for sympathy or anyone to feel bad for me and that was not at all the point of what I wrote. I am in remission from the core of my illness and I am incredibly grateful for this. But I am not 100% and will never be functioning at pre-illness levels and I accept this. I asked my doctor if I was in remission for five years if this meant I was "cured" and he said no. He was not at all trying to be negative vs. he said that there is no way to predict if the autoantibodies will return that were attacking my muscles, my breathing, and my autonomic nervous system. Some people are in remission from an illness forever but some are not and their illness returns. This does not mean that they did not try or they did not fight it 100% with everything that they had.

And no, I can't relate to cancer, wheelchairs, or years and years of turmoil. It sux that irreversible damage can be done, and I hate the idea of it. I am very sorry for you, and I don't know what else to say.

I am genuinely happy for you that you had a mild illness and quickly found treatments that led you to 100% recovery.

 

[Shen]

Rough day. Reading this forum is so helpful but damn it can be disheartening sometimes. Does anyone with CFS get back to 100% ever? If so does it happen over time on it’s own or only through treatments and supplements?

There have been cases of people returning to normal. Consider that those people stop hanging around here because they feel good and let's be honest. There is no reason to be here once you are out.

Also there are people who recovered on studys. People who didn't go to this forum.

There are also a lot of people who have greatly improved. To the point where they can live a semi normal happy life.

There is a chance to recover. If not. There is s good shot of improving to the point of living a good life with it.

There are also some terrible horror story's here. But its obvious that the more severe people tend to hang around more on this forums regularly because of this. So its easier to see the worst outcomes.

At the end. Your outcome does not depend on the ones here. CFS/ME is a name for idiopathic chronic sympthoms. Not s disease in itself. Wich makes any case unique. Think it like cancer. Some are very serious and aggressive, others much more easier to treat and passive.

 

[andyguitar]

There are also a lot of people who have greatly improved. To the point where they can live a semi normal happy life.

Yes there are, and some of them are still active members on this website. You will probably meet some of them when you have been here a bit longer.

 

[marlunette]

I have gone into remission from ME/CFS symptoms twice (the first time I didn't have it for a full six months though). However, my sensitivities to environmental triggers worsened with both episodes and never fully recovered.

So I can say I'm in remission from ME/CFS but my MCAS is definitely not in remission. I've had MCAS symptoms my whole life so I don't expect to ever recover from it.

 

[hunter1899]

I had a remission of sorts. Id say 95% but still had sleep issues. I was back training at the gym and a few lifts i beat from my pre cfs days.

My decline happened this year after a shortage of famvir so i had 2 periods of no famvir and it stuffed me up. Im slowly crawling out of the hole now as ive been consistently back on famvir for 3 months. When there was no famvir i did go on valtrex but as in past experience i find it just doesnt help much.

I just believe im going to be reliant on famvir forever. I wish they would sponsor me🤣🤣😂😂

can you tell me a bit about your symptoms? And what is your PEM like ?

 

[heapsreal]

can you tell me a bit about your symptoms? And what is your PEM like ?

Typical post viral symptoms and insomnia was quite bad, now it sporadic. Pem is quite text book, its just a worsening of symptoms a day or two after something more strenuous then i was currently use to. Insomnia, brain fog, aches and pains etc how long it lasts varies.