Possible CFS success story. Got much better after 4-5 years. Here's what has helped.

[msf]

@arty0mk - I'm sorry that your doctor was not more helpful. But I think you are very much incorrect in deciding that CFS was the culprit.

ME/CFS is defined by a pathological reaction to exertion. Exercise does not help us. It makes us extremely sick for days or weeks afterward. If someone finds exercise helpful in recovery or in just generally feeling better, it is a very strong indication that they do not have ME/CFS.

But not having ME/CFS is something to be grateful for, because people with ME/CFS don't recover with supplements, or exercise, or diets, or SSRIs, or anything else thus far. I'm glad you recovered, but I don't think it is relevant to people with ME/CFS.

You said ME/CFS, he said CFS. There is a difference. As I said above, he may well have fit the Fukuda criteria.

 

[roller]

congrats for getting back to life, whatever you were 'diagnosed' by one of those losers or not.

why do ppl still give anything about their opinion?
there isnt ONE out there, who does help - any autist, adhd, cfs, ms or whatever...
and still ppl do trust and hope onto them? lol-1

they can cut off limbs, cancers and cast bones.
with everything else they are obviously swamped, entirely overstrained and helpless.
telling you, that you are. lol-2

my mother has bladder infection for more than 40 years.
for more than 40 years she sees our doctor for that.
she says he is good. lol-3

 

[roller]

exercise is key.
dont hate me.

all jogging, cycling or i think its "aerobic" is deadly - to me.

everything else, like walking, stretching, tai chi, yoga, callanetics is good.
it may be strengous, you can sweat, but you mustnt get out of breath.
its so for me.

exercise is most important. to keep your muscles active, your fascia, all the tissues.
they are most attacked by whoever/whatever is in there on a rampage...

 

[msf]

I have also found that stretching and slow walking make me feel better - I think this is mainly because it helps to drain the lactic acid out of the muscles (athletes warm down in this way).

 

[worldbackwards]

exercise is key.
dont hate me.

Depends if you're up to it. If you're too ill to do something, it doesn't matter how good it's supposed to be for you, it will make you worse. On the other hand, staying in bed for years on end is hardly a healthy business in and of itself.

It helps if you can be upright and get about but if you can't, there's no point making yourself ill trying to do it or feeling guilty about it.

 

[msf]

Yes, I should add that I only feel up to it when my diet (and therefore sleep) is going well.

 

[roller]

@worldbackwards

Depends if you're up to it. If you're too ill to do something, it doesn't matter how good it's supposed to be for you, it will make you worse. On the other hand, staying in bed for years on end is hardly a healthy business in and of itself.

It helps if you can be upright and get about but if you can't, there's no point making yourself ill trying to do it or feeling guilty about it.

yes, its true. and there is no need to feel bad about anything.
im not talking about gym nor that i am doing anything like that 'right'.

when in bed, unable to move, turn on the side and lift one leg 5 centimeters up and down, until muscles hurt.
in the evening try the other leg. ..something like that... it may help.
surprisingly, badly done sit-ups help me to fall asleep. in bed, i make as many as possible, and take the back-pain with it.

 

[Valentijn]

when in bed, unable to move, turn on the side and lift one leg 5 centimeters up and down, until muscles hurt.

And then crash. We cannot do that sort of thing "until muscles hurt". The crash threshold is much, much lower than the point where the muscle pain starts.

 

[roller]

crash? what would happen if you do that?

 

[Valentijn]

crash? what would happen if you do that?

For ME/CFS patients, normal or even trivial amounts of exertion trigger Post-Exertional Malaise (PEM), also often called a "crash". We get extremely sick for days or weeks after exertion.

Because pain is usually insufficient to identify our threshold for activity, we engage in pacing and reduce our activities to manageable levels. Heart rate monitors can also often help.

But if someone is bed-bound, exercising until it hurts is quite possibly the stupidest thing they could conceivably be doing with the very very small amount of energy available to them. Eating, using the bathroom, speaking, etc, would usually have priority. Exercising until the muscle hurts would mean they would not be able to do those things, either as a direct trade-off for doing the exercise, or as a longer-lasting consequence of exceeding their limitations.

 

[roller]

ok, i dont know me/cfs. but i could do that musclewise, without feeling worse.
the last thing i can do in "crisis" phase is eating, speaking.

as said, its about one body part at a time.
ater a while one can perhaps increase - also depending on the phase (of the disease) one is in.

 

[Jon_Tradicionali]

congrats for getting back to life, whatever you were 'diagnosed' by one of those losers or not.

why do ppl still give anything about their opinion?
there isnt ONE out there, who does help - any autist, adhd, cfs, ms or whatever...
and still ppl do trust and hope onto them? lol-1

they can cut off limbs, cancers and cast bones.
with everything else they are obviously swamped, entirely overstrained and helpless.
telling you, that you are. lol-2

my mother has bladder infection for more than 40 years.
for more than 40 years she sees our doctor for that.
she says he is good. lol-3

What?

 

[Jon_Tradicionali]

I agree the forum should not be polluted by potential misinformation by non CFS sufferers.

However, who is to say he does or does not have CFS?

What is CFS to begin with?

A collection of symptoms which can have a variety of biological causes at its root.

His symptoms resemble ours close enough, so I'll accept that for what it's worth.

Although "simple" supplements such as St Johns Wart and D Ribose being the key to the OP's recovery does make it sound like it may be CFS-lite somewhat.

When someone reports 'cure' and 'recovery' coming by way of Coq10, VIT C, D Ribose etc...it does to a degree frustrate me, others too I imagine, as we've tried these years ago and are only still on this forum because nothing has worked for us.

Nevertheless, I'd recommend everyone to not be confined exclusively to the world of CFS. After all, there is no consensus as to what it is/caused by yet. Explore other avenues such as hormonal disorders, blood disorders, brain disorders etc....

To end, congratulations on better health @arty0mk

 

[arty0mk]

Although "simple" supplements such as St Johns Wart and D Ribose being the key to the OP's recovery does make it sound like it may be CFS-lite somewhat.

When someone reports 'cure' and 'recovery' coming by way of Coq10, VIT C, D Ribose etc...it does to a degree frustrate me, others too I imagine, as we've tried these years ago and are only still on this forum because nothing has worked for us.

To end, congratulations on better health @arty0mk

Thank you!

I totally understand your frustration. I do realize that I didn't have it nearly as hard as some of you.

I think I should mention that I have tried hundreds of supplements that reportedly have helped others and dozens of combinations and protocols. The vast majority of them either didn't make any noticeable difference, or made me feel worse. The ones that did make a noticeable difference are very few and I have mentioned most of them. And of course I was very surprised for something as simple as D-Ribose and St. Johns Wort to make such a huge difference.

 

[msf]

If this forum is only for people with severe ME/CFS, then it should say that in the title. I have gone from being almost housebound and feeling pretty awful the year before last to being able to go out and mainly just feeling tired last year. This was almost all a result of changing my diet, so why shouldn´t I tell people about it on this forum? It won´t work for some, but if it works for one person in taking them from housebound to being able to go out then that´s a positive thing, isn´t it?

 

[Mij]

@Jon_Tradicionali his symptoms can be a number of conditions or deficiencies. Take what you want from it.

 

[msf]

Or it could be CFS.

 

[msf]

Actually, isn´t that what CFS is?

 

[msf]

If the title of the forum was General Treatment - ME (ICC criteria) then I think those telling the OP that he is in the wrong place might have a point.

 

[Gondwanaland]

Any kind of stimulants used to give me increased anxiety, but I have been able to GREATLY reduce it and most of my mental symptoms like brain fog with 1 supplement: St. John's Wort, standardized extract. It has done wonders for my well being to a point that I feel mostly healed. It has changed everything, including my energy levels and even response to exercise. To this day I'm not sure how it has been able to do so much good, but it did. If you want to try it, experiment with different brands. An older way of making effective St. John's wort extracts is to standardize for Hypericin. "Now St John's Wort" is what I'm taking and it works. A better and more recent way is to standardize for Hyperforin, like the Perika brand. I currently experiment with it and it does work better, but is more expensive. Also research has shown that not all brands are equal in terms of claimed and actual hypericin/hyperforin content, so if one brand doesn't work or work well - try another. Now brand has never let me down and recently Perika.

This supplement is recommended for people with elevated Th1 immune system:

J Leukoc Biol. 2008 Jan;83(1):212-9. Epub 2007 Oct 18.
Hyperforin down-regulates effector function of activated T lymphocytes and shows efficacy against Th1-triggered CNS inflammatory-demyelinating disease
Abstract
Hyperforin (Hyp) is an active compound contained in the extract of Hypericum perforatum, well known for its antidepressant activity. However, Hyp has been found to possess several other biological properties, including inhibitory effects on tumor invasion, angiogenesis, and inflammation. In this paper, we show that treatment with Hyp inhibited IFN-gamma production, with down-regulation of T-box (T-bet; marker of Th1 gene expression) and up-regulation of GATA-3 (marker gene of Th2) on IL-2/PHA-activated T cells. In parallel, we showed a strong down-regulation of the chemokine receptor CXCR3 expression on activated T cells. The latter effect and the down-modulation of matrix metalloproteinase 9 expression may eventually lead to the inhibition of migratory capability and matrix traversal toward the chemoattractant CXCL10 by activated lymphocytes that we observed in vitro. The effect of Hyp was thus evaluated on an animal model of experimental allergic encephalomyelitis (EAE), a classic, Th1-mediated autoimmune disease of the CNS, and we observed that Hyp attenuates the severity of the disease symptoms significantly. Together, these properties qualify Hyp as a putative, therapeutic molecule for the treatment of autoimmune inflammatory disease sustained by Th1 cells, including EAE.