Has anyone made significant improvement?

[Matthew_2]

Has anyone made significant improvement in a particular area after suffering for years with this illness?

I am looking for a ray of hope: that, as horrible as I feel, with so much dysfunction over multiple systems in my body, the damage is not necessarily permanent.

 

[Wishful]

Yes, absolutely. In the past year I cured myself of physically-induced PEM. The two years before that I'd had it effectively blocked by cumin, but last year it got permanently (fingers crossed) cured.

Much longer ago, the same thing happened with LDN and neuropathic pain: a year or so of LDN effectively blocking the pain, the pain stayed gone ... except that it still occasionally shows up during severe ME flare-ups.

I also had a worsening of symptoms that was blocked by taking T2 or iodine every 21 days. That problem went away at the same time that PEM did.

So yes, it is possible to find effective treatments and even cures which make major improvements in quality of life. It just seems to be a matter of luck. The more things you try, the better your chances of winning.

As for worry about permanent damage, I'll point to temporary remissions. I repeatedly (even several years into ME) switched from feeling quite awful from ME, to feeling fully healthy and energetic again, so no permanent damage was involved. I think of ME as a simple switch somewhere in our bodies. The little spring that keeps it in the 'healthy' position is broken, so it keeps dropping back into "ME" position. We just need to find that switch and replace it, or just stick a piece of tape over it to keep it in 'healthy'.

I still believe that if they found the right chemical, we could take a pill and be switched back to more or less fully healthy within an hour. Some of us might have some residual problems from lack of exercise, or chronic stress, or messed up microbiomes, but that should be fixable.

 

[ljimbo423]

Has anyone made significant improvement in a particular area after suffering for years with this illness?

I am looking for a ray of hope: that, as horrible as I feel, with so much dysfunction over multiple systems in my body, the damage is not necessarily permanent.

I have improved from severe and mostly bedridden for 6-8 years to mostly mild symptoms now. It's been a slow process but shortly after making some small changes I moved from mostly bedridden to maybe a 2-3 on the disability scale.

A big part of those fast changes came from the hope of the possibility of my being able to get healthy again. It gave me enough drive to research and make the changes I've needed to improve.

Hope for the possibility of improving, without doubt, is what has been and is the the main energy behind my success. For myself, I became convinced early on that my ME/CFS started in my gut.

That gave me something tangible to hold on to and "treat". It gave me purpose and hope. The kind of things that I needed to move forward and heal some. I think it's absolutely necessary to find hope and then something to do with that hope.

As I said, for me that something was that my gut was the root cause of my ME/CFS and treating it. Then I moved onto improving mitochondrial dysfunction and low grade brain inflammation. All of which gave me meaning and purpose and helped to keep me moving forward.

 

[xebex]

yes, i fixed my brain fog with LDN and sugar free diet - LDN did most of the work, i took it for 10 months, i still need to limit my sugar to stay brain fog free but don't need LDN anymore.

I also made a 30% improvement using EFT, now, I generally feel like i have enough energy to do things but i still get PEM as a result of unknowingly going over my limits, EFT and LDN moved me from 30% to 60% and even got to 70% last summer after an osteopath treatment.

Sadly i had a back injury which has set me back big time - it seems to be triggering my nervous system into shutting down, and i've been getting crazy muscles spasms and unable to stand for long, but recently I've been using a far infrared heat pad to significantly reduced the toxin build up in my back muscles and considerably cut the PEM down, sadly my back injury is getting in the way of me benefitting from the improvements I've made which is very frustrating. BUT there IS hope!

 

[leokitten]

The biggest factors it seems @Matthew_2 are your age, how long you’ve had ME, and severity of initial triggering infection and stages. The younger you are when you got ME, the closer in time you are to when you got it and, to a lesser extent, the severity of the initial triggering infection and stages, the higher the likelihood that there will be a spontaneous significant improvement or recovery.

These are much bigger factors and chances than any treatment etc and as @Wishful said it correctly it’s all a matter of luck, what treatments seem to work for one don’t work for most others or anyone else at all. But there are stories of long-term improvements even in people who don’t fall within the above factors, it’s just much rarer.

 

[Mary]

@Matthew_2 - in 2014 (after 16 years of ME/CFS) I discovered that branched chain amino acids cut my PEM recovery time by more than half. I used to be bedridden for 2 -3 days when I crashed, when I exceeded my 3 -4 hours a day energy envelope of light exertion. With the BCAAs, I now recover in one 1 day. This has made a huge difference for me. I'm still fairly limited in what I can do, but it is not as soul-destroying as it was when my crashes were longer and just overall much worse.

I've also found some other things that have helped with energy: methylfolate (had to add in potassium when I started this), B1 (increased my need for phosphorous), B6, creatine - all of these improved my energy. I'm currently experimenting with an oxygen concentrator - it's too soon to tell if it will be helpful or not, but am crossing my fingers!

I do have moments - even a few hours now and then of feeling well and lately have actually had almost an entire day of feeling well - I think my body is capable of health, and like @Wishful said, it may be a matter of finding the right switch to flip.

I think our cells have trouble absorbing and metabolizing nutrients, and that's why high doses of many of them are needed by so many - e.g., thiamine gave me a very nice energy boost - it's not fixing the root problem, but it certainly makes me feel better.

And I also agree the more things you try, the better chance you will have of making progress. I do think there is reason for hope! I definitely feel better than I did 10 years ago --

 

[Wishful]

The biggest factors it seems @Matthew_2 are your age, how long you’ve had ME, and severity of initial triggering infection and stages.

I'm not convinced that's even a significant factor. I made my biggest improvements in year 18 or 19 of my ME, age 58. Maybe they'd have worked as well in year one, but while I'm sure I had cumin then, I wasn't lucky enough to notice its effect.

 

[maybe some day]

Has anyone made significant improvement in a particular area after suffering for years with this illness?

I am looking for a ray of hope: that, as horrible as I feel, with so much dysfunction over multiple systems in my body, the damage is not necessarily permanent.

Yes. I've been sick an extreme amount of time. Over the years I've cycled from feeling of certain death to spending the afternoons on my motorcycle, and living 80% of normal health for quite some time. Could never do any cardio tho.

The last 4 or so years have been utter shit. But near full remissions do happen. Imo, the illness never fully goes away, it just hybernates. Just to add, I don't feel there is permanent damage, and the research I've read says the same. Once the illness subsided, my fog went away, sleep was normal, fatigue diminished, and my moods improved astronomically.

 

[lenora]

Yes, improvements can come and go, depending on what's happening in/to the body at the time of feeling better (I won't say remission). Things change is more like it. e.g. I had numerous (well over 100) FM "knots" (can't think of term at this time) during the 35++ years I've been diagnosed with this illness. All seem to have disappeared at some point during this time. I've also had severely swollen glands that just suddenly disappeared, but with all of them a different pound of flesh is extracted.

I've always had GI symptoms, but now they're really severe. I don't know what to eat, so many types of diet....and I'm torn in so many directions, so much info, too many doctors (that I don't really listen to any longer, except one), and exhaustion that's never-ending. That one's the key....I did have a couple of years where I had enough energy to walk again (outside) but that ended with attacks of Shingles. I was then bedridden for a year, or had so little energy that I could do nothing.

I'm older though, 74, and with that comes the general problems of aging. 6 stents, high cholesterol, high BP, seizures you name it, I've been there. Pain is better than it used to be....lots of nerve pain that was totally unbearable at one time, but ice has helped in controlling it as much as possible. I also suffered a number of falls last year, one really tore my back up, also. I'm walking around our house as much as possible, at a pretty fast clip but can't maintain it for longer than 10 minutes at a time, thus I do it a few times and also exercises

The illness changes, that's what makes it so hard to find a cause/effect treatment. I've never smoked, been into alcohol big time (although I did quit it totally when my meds increased....eat well although the no. of "good for you" diets out there are insane....just pick a thing to do, it seems and hope for the best. I wish I had more answers for you, but time does change the intensity of things....at least until something comes along to make it more difficult. Oh, but insomnia has been a constant companion. I find that short acting anesthetics, steroids and certain meds (some to help you sleep!) make it all worse. I just came off a 4-5 mo. period where I wasn't sleeping at all, but would just keep going until I passed out for perhaps 2 hrs. at most at a time. I blamed that on my latest hospitalization. I'm a believe in certain meds (not sleeping pills), vitamins, supplements and herbal remedies. Wishes of hope to you. Yours, Lenora.

 

[Cipher]

Has anyone made significant improvement in a particular area after suffering for years with this illness?

I am looking for a ray of hope: that, as horrible as I feel, with so much dysfunction over multiple systems in my body, the damage is not necessarily permanent.

Check out this great thread; List of ME/CFS Recovery and Improvement Stories.