Anyone ever managed to get back to where they were???

[Inca]

I just wondered as I'm new here and have only found out recently I was orginally misdiagnosed for years .... if anyone has ever had a period where they managed to get back to their original levels of mobility? (ie before your first big episode of ME/CFS).

At the start of my 30's I was able to walk everywhere, ride a bike, drive, went on holidays, swam with dolphins etc ....then suddenly I was struggling to walk, barely had the energy to get through the day, had to get a mobility scooter just to walk my dog (only had my last dog about a year when it started getting that bad) ..I've never 'walked' my dog again since as never achieved more than just a few steps from room to room and my balance is too bad for outside over uneven terrain. (It's now 20 years later!...different dog obviously but mobility never recovers beyond a certain point)

Being in a car going over a certain speed has always made me feel sick and disorientated ever since can't be in one for longer than short 5 min trip so never been on motorway or on holiday since the last holiday I had before my symptoms started.

Been housebound since as I've never recovered the energy to go out even for a full day trip and have had episodes so bad `I was bedbound and having to move a fraction made me feel like screaming (though it would have probably taken too much energy!) and couldn't even get from my bed to the loo without an electric wheelchair that had to have a reclining seat and seat riser so I could stay in it long enough to be able to make the dog something to eat and let them into the garden. I live alone and had no carer when that episode hit.

That was when I was told it was more likely I had arthritis (with family history of it too) and they looked at my original diagnosis and said it wasn't right....so then had to wait months to get an appointment to see a specialist in ME/CFS and Fibromyalgia.

I often wonder if I'd have ever made a full recovery if we'd have known what it was from the beginning and been given the right advice and/or treatment after the very first bad episode?

Other than learning to 'pace yourself' what are some people getting (treatment or medication wise) that's enabling them to make full recoveries back to being fully mobile again?

What are my chances after 20 years of being treated for the wrong thing and only ever getting back at most partial mobility after several severe episodes over the years? I'm still 'in recovery' from my last severe spell and wondering if this could be the time I make it back now I know what I'm dealing with?

 

[Wishful]

Sure, I've managed complete remission. Multiple times. Sadly, they never lasted more than 'the rest of the day'.

What are my chances after 20 years of being treated for the wrong thing and only ever getting back at most partial mobility after several severe episodes over the years?

I believe that they're good. I believe that ME is a state, and it can be switched off completely and rapidly ... if someone figured out how to do it reliably. I've had several different things switch me back to the fully healthy state, so there must be several pathways to switching ME off.

I do believe that if they figured out the right pill, you could get your prescription (have it delivered if you're bedridden), take the pill, and switch out of the ME state within hours, possibly within minutes. While you might still suffer from some atrophy from lack of exercise, it shouldn't take long to restore full health.

There are no indications that ME involves permanent degradation. The available evidence (people who have achieved remission) shows the opposite.

 

[Rufous McKinney]

Other than learning to 'pace yourself' what are some people getting (treatment or medication wise) that's enabling them to make full recoveries back to being fully mobile again

No, not really...sorry to say.

I"ve had some intense symptoms back off and be less intense.

I' ve experienced considerable break down of tissues...I seriously doubt there is a return to full health condition once one has been this ill for this many decades.

 

[Inca]

. I've had several different things switch me back to the fully healthy state, .

like what????

 

[Inca]

No, not really...sorry to say.

I"ve had some intense symptoms back off and be less intense.

I' ve experienced considerable break down of tissues...I seriously doubt there is a return to full health condition once one has been this ill for this many decades.

Hi, that's a shame. I have some electric pedals which I've used for years, they're easier than a regular exercise bike as can use them for a wheelchair and pedal my legs for me. I've used one of those Revitive circulation boosters too that have an 'Isorocker' function that's meant to exercise your legs as if you were taking steps.

I have managed to stay being able to weight bear enough to transfer between chairs and manage a few steps with walking aids but only indoors where its flat and I know the terrain. Even on a 'good day' it seems to impact pre-existing balance and muscle co-ordination difficulties (including speech muscles - I had 'mild dyspraxia' as a young child) previously barely noticeable to now..people who don't know me thinking I have CP!

 

[Wishful]

like what????

Prednisone: took 5 days of no effect, then full remission until I finished the pills. It worked just as well the second set of pills (took only 2 days to kick in), but never worked after that.

Cumin (cuminum cyminum): it triggered full remission the same way prednisone did. I started taking it daily, but at some point in the next week or two, it was no longer working, and never again triggered remission (did block PEM though).

T2 or iodine (which boosts endogenous T2 production): either triggered remission the first few times I tried it, but after the first few remissions, it no longer triggered them.

There were a couple of other temporary remissions that I never figured out the trigger for.

I'll point out that these first-time temporary remissions were complete surprises, and no one else has reported the same effect. Other people have reported other triggers for their temporary remissions ... which also didn't work for anyone else. So it's possible that you have some trigger just waiting out there. It could be some Chinese fungus or a Chilean herb or the artificial flavouring in guava-flavoured jellybeans; there's no way to predict what would work for an individual. If you try a lot of different things, you might find something that works.

Even if the remissions are only temporary, and can't be repeated, it is absolutely a major boost to your spirit to know that the horrible nightmare can be broken, and that it's a very rapid switch from full ME to full health.


BTW, looking at these three remission-triggers, the obvious question is: what do these three different chemicals do in the body to trigger the same effect? Unfortunately, the body is really complex, and the common point might be several stages downstream of their initial molecular bonding, so finding the answer isn't easy. I think it's likely that the T2 works by boosting RNA transcription, but it provably boosts hundreds of thousands or more different RNA transcriptions, so that doesn't narrow things down much.

 

[Inca]

Even if the remissions are only temporary, and can't be repeated, it is absolutely a major boost to your spirit to know that the horrible nightmare can be broken, and that it's a very rapid switch from full ME to full health.


BTW, looking at these three remission-triggers, the obvious question is: what do these three different chemicals do in the body to trigger the same effect? Unfortunately, the body is really complex, and the common point might be several stages downstream of their initial molecular bonding, so finding the answer isn't easy. I think it's likely that the T2 works by boosting RNA transcription, but it provably boosts hundreds of thousands or more different RNA transcriptions, so that doesn't narrow things down much.

but why would they work only once??? surely something either works or it doesn't?? if things can be become less effective over time could it be that my body isn't responding as well to synthetic levothyroxine? I've been taking it since I was a baby, being born with mine not working?

Due to being CEV and my surgery being in crisis right now with staff off and not enough Dr's and community nurses available I haven't been to the surgery or been able to get a community nureout to take blood for a couple of years now.

I haven't even had this years medication review (due in January, its now June!) as they have no-one available to do an home visit and I've been unable to get through on the phone when using the typetalk relay service (for deaf/speech impaired) - the problem is the waits are too long for receptionist to get to my call and the service has to to leave the call to attend to other people's calls so losing my place in the queue constantly.

I know fatigue can be an symptom of under active thyroid but usually once on medication if thats the cause of it then it will improve once the correct dosage is started. I wonder if its something like my body is no longer converting as much T4 to T3 as it needs to? But the GP will only test for T4 they never give me numbers I just get told whether its within 'normal range' or not.

I'm wondering if its worth getting a private online test done of full thyroid panel so I have soemthing to take to them? I might even bypass them completely and try sending results to an online GP service or thyroid specialist to see if I can get more help. I find I get talked to more like an adult when they don't know I have autism! ..and I can explain as much as possible via writing first! (as I struggle with physically speaking so much and can't work out other people's speech on a phone/video call).

 

[hapl808]

but why would they work only once???

This is a frustration that many with ME/CFS symptoms have experienced to one degree or another. The first time I took antibiotics (for a bad bronchitis) about 10 years into my illness, I experienced almost total remission for a few days. When I repeated that antibiotic (zithro) or others (doxy, etc), the results were much less dramatic and eventually nonexistent. Why does that happen? Who knows. Others have reported the same with Abilify and Goldstein reported it in his writings as well.

 

[Wishful]

but why would they work only once??? surely something either works or it doesn't??

It may not be obviously logical, but that's an all-too-common response to treatments for ME: they work for one or a few doses, then stop working and never work again. There is logic behind it, since the world does work logically (until you get into quantum physics); we just haven't learned enough to see the logic.

A counterexample of the 'either it works or it doesn't' line of thought is how T2 (or iodine) worked for me. If I took it daily, it stopped working after the first few days. What did work was taking it once every 21 days. Somehow, the T2 did something (transcribed RNA I think) which altered cellular function for a consistent 21 days, after which the cells self-destructed or some such thing.

As for thyroid issues, there are some members here who know a lot about the special disorders and which tests need to be done to properly diagnose them. I think there's a thyroid sub-forum you can ask in.

One question is: is what you have physical fatigue (inability for your muscles to do normal work) or neurological fatigue (neural dysfunction messing with proper signal flow, leading to the perception of fatigue)? The studies seem to show that ME isn't mitochondrial dysfunction or thyroid dysfunction. Some PWME might have those disorders as downstream symptoms, but they don't seem to be the root cause. You might spend a lot of effort and money trying to get thyroid tests done, with any treatment for that doing nothing for your ME symptoms.

I suggest you read about T2 (3-5 diiodothyronine), which is another active thyroid hormone that is generally ignored by practicing physicians, including endocrinologists. You could spend enormous effort on tests, or you could have a bottle of T2 ($30 maybe?) delivered to your door and see if that makes any difference to your symptoms. I'm biased, since it worked well for me, while T4 and T3 had no noticeable effect. If you already have a bottle of tincture of iodine (I did) or some iodine supplements or even seaweed, that's a possible experiment too. I noticed a big difference (might have been temporary remission) from the tiny amount of KI in a multivitamin/mineral tablet.

With ME, I trust experiments on myself much more than I trust the doctors to help me by doing tests, since no one understands ME well enough to design treatments based on tests.

 

[hapl808]

If you already have a bottle of tincture of iodine (I did) or some iodine supplements or even seaweed, that's a possible experiment too. I noticed a big difference (might have been temporary remission) from the tiny amount of KI in a multivitamin/mineral tablet.

My basic thyroid stuff looked fine, but since I recently felt that selenium over time worsened my symptoms, I wonder if iodine or iron or something could be relevant. I eat dark chocolate and occasionally took copper supplements and that didn't seem to change anything.

Debating between trying an iodine supplement or just some seaweed. Things like miso or anything with high glutamate content seems to affect me poorly, so not sure if daily seaweed is a great idea as glutamate is often isolated from seaweed I believe. But usually small amounts didn't affect me poorly in the past as far as I recall.

I use mostly iodized salt, but I don't eat a lot of salty foods so maybe that's not enough.

 

[Wishful]

FWIW, my ME responded to abrupt surges in iodine or T2 (100 mcg). Taking it daily made it stop working. I expect that low daily doses would provide enough iodine for your thyroid, but wouldn't do whatever it did for me. My hypothesis is that the surge in T2 (supplemental or produced from the iodine) boosted RNA transcription of something that countered part of my ME. Hmm, maybe small doses of T2 get utilized before reaching wherever the effect was taking place (likely my brain), and a large dose meant that some made it all the way to the target.

 

[CSMLSM]

Sure, I've managed complete remission. Multiple times. Sadly, they never lasted more than 'the rest of the day'.



I believe that they're good. I believe that ME is a state, and it can be switched off completely and rapidly ... if someone figured out how to do it reliably. I've had several different things switch me back to the fully healthy state, so there must be several pathways to switching ME off.

I do believe that if they figured out the right pill, you could get your prescription (have it delivered if you're bedridden), take the pill, and switch out of the ME state within hours, possibly within minutes. While you might still suffer from some atrophy from lack of exercise, it shouldn't take long to restore full health.

There are no indications that ME involves permanent degradation. The available evidence (people who have achieved remission) shows the opposite.

2 years and I am still recovering function and working on the atrophy so no not a switch. Its complicated how you do it and requires you to rebuild everything as you go. Sadly many will not achieve this because it requires you to get worse before you get better fully. It is a journey with many twists and turns along the way and many drop out of trials for these very reasons from what I can see.

When someone does achieve it they are not believed also. Coping mechanism I think.

 

[CSMLSM]

Prednisone: took 5 days of no effect, then full remission until I finished the pills. It worked just as well the second set of pills (took only 2 days to kick in), but never worked after that.

Cumin (cuminum cyminum): it triggered full remission the same way prednisone did. I started taking it daily, but at some point in the next week or two, it was no longer working, and never again triggered remission (did block PEM though).

T2 or iodine (which boosts endogenous T2 production): either triggered remission the first few times I tried it, but after the first few remissions, it no longer triggered them.

There were a couple of other temporary remissions that I never figured out the trigger for.

I'll point out that these first-time temporary remissions were complete surprises, and no one else has reported the same effect. Other people have reported other triggers for their temporary remissions ... which also didn't work for anyone else. So it's possible that you have some trigger just waiting out there. It could be some Chinese fungus or a Chilean herb or the artificial flavouring in guava-flavoured jellybeans; there's no way to predict what would work for an individual. If you try a lot of different things, you might find something that works.

Even if the remissions are only temporary, and can't be repeated, it is absolutely a major boost to your spirit to know that the horrible nightmare can be broken, and that it's a very rapid switch from full ME to full health.


BTW, looking at these three remission-triggers, the obvious question is: what do these three different chemicals do in the body to trigger the same effect? Unfortunately, the body is really complex, and the common point might be several stages downstream of their initial molecular bonding, so finding the answer isn't easy. I think it's likely that the T2 works by boosting RNA transcription, but it provably boosts hundreds of thousands or more different RNA transcriptions, so that doesn't narrow things down much.

immune modulation

 

[Rufous McKinney]

When someone does achieve it they are not believed also. Coping mechanism I think.

thats the truth!

what is it about the humans? I puzzle over psychology.

I was reading about how we prefer bad news over good. Somewhat related. Your improvement is good news, worth sharing. Had you arrived with bad news, you'd have a whole litany of new friends!

 

[CSMLSM]

thats the truth!

what is it about the humans? I puzzle over psychology.

I was reading about how we prefer bad news over good. Somewhat related. Your improvement is good news, worth sharing. Had you arrived with bad news, you'd have a whole litany of new friends!

Not here to make friends as my objective. Here to share a possible answer and I am at a loss as to how to proceed. I am doing my best I suppose while still recovering my physical strength. But everything nervous system wise is completely fine. No more dysautonomia (wish I new this word before) basically.

I hope maybe in a year or two to be fit enough to get back to some sort of work after approx 20 years. I am very unfit as you can imagine being ill so long.

 

[Wishful]

2 years and I am still recovering function and working on the atrophy so no not a switch.

That may not be remission, merely reducing some symptoms, while the core dysfunction of ME remains. From my experience, temporary remissions are a true switching out of the ME state, which also eliminates all the symptoms that ME causes. I expect you could take years whittling down all the downstream symptoms of ME to some degree, but that still wouldn't be remission of ME.

 

[Treeman]

First got I'll at 6, I'm 57 soon. I've had a couple of periods of nearly full remission bit have been constantly I'll for about 30 years.

5 years ago I became bed / couch bound, but I'm now able to spend a fair bit of time on my feet during the day. I hope to keep improving.

 

[CSMLSM]

That may not be remission, merely reducing some symptoms, while the core dysfunction of ME remains. From my experience, temporary remissions are a true switching out of the ME state, which also eliminates all the symptoms that ME causes. I expect you could take years whittling down all the downstream symptoms of ME to some degree, but that still wouldn't be remission of ME.

I did not say remission you did. I am recovering and am 99% normal. I manage my dysfunctional immune system with a CB2 agonist, caryophyllene. Given the nature of EBV (latent virus) what I am doing is possible what you suggest likely not.

 

[CSMLSM]

First got I'll at 6, I'm 57 soon. I've had a couple of periods of nearly full remission bit have been constantly I'll for about 30 years.

5 years ago I became bed / couch bound, but I'm now able to spend a fair bit of time on my feet during the day. I hope to keep improving.

I hope you do too. I have been ill since that age approx. It is strange to not have cognitive issues like I have had all my life. I even think I might be able to learn another language. It is something I have always wanted to do but there was no way before it would ever be possible. My coordination is now amazing and my hand before would shake and could no be held still, but now oh my solid. So many possibilities now I hope my treatment does not stop working after experiencing this!
I was even diagnosed with a tremor!

 

[Rufous McKinney]

It is strange to not have cognitive issues like I have had all my life.

enjoy that!

I'm the opposite- I am puzzled that merely six years ago, I'm writing a 185 page report.

And now can't really make it through a single paragraph

Strangers Things, and an upside down world feeing.