ME/CFS Test? Can you raise your legs when lying down?

[Lindberg]

@Gingergrrl Perhaps not being able to lift the leg up at all is a different thing from being able to lift it but not for long? Perhaps it's more of a neurological problem? But I'm no doctor so I really don't know. Sorry.

In my case it was clearly a mitochondrial problem since the muscles did work but couldn't perform repeatedly. Perhaps that's why Q10 has made a big difference for me? I only get good resultat from the q10 if it also contains oil of some sort though, dryed q10 doesn't make any difference at all for me. It needs some fat for the uptake.

@RinkyInky You nailed my doctors words! It was very much: you are doing the right things, keep on doing that... So, no program unfortunately.

 

[RinkyInky]

@Gingergrrl Perhaps not being able to lift the leg up at all is a different thing from being able to lift it but not for long? Perhaps it's more of a neurological problem? But I'm no doctor so I really don't know. Sorry.

In my case it was clearly a mitochondrial problem since the muscles did work but couldn't perform repeatedly. Perhaps that's why Q10 has made a big difference for me? I only get good resultat from the q10 if it also contains oil of some sort though, dryed q10 doesn't make any difference at all for me. It needs some fat for the uptake.

@RinkyInky You nailed my doctors words! It was very much: you are doing the right things, keep on doing that... So, no program unfortunately.

Hey Lindberg,

Thanks for the quick replies!

May I ask how do you live around this (work/social/physical activity etc.)?

Also, although I am not diagnosed, my Naturopathic Doctor who has just studied gene therapy/ epigenetics is going to put me on a programme in the future based on my symptoms and 23andMe results. It won't be soon though as I still need to go through the basics of rebuilding my gut bacteria etc.

I can't vouch for this method yet as I am just beginning it and she says that results will only come in about 6 months, but at least I have something to look forward too before I need to worry about finding other methods. You might want to find a Naturopathic Doctor (not just a naturopath or a homeopath) that has studied epigenetics.

Again, I vouch for it yet, but it's comforting for me to have someone guide me at least for the time being.

Cheers!

 

[Gingergrrl]

@Gingergrrl Perhaps not being able to lift the leg up at all is a different thing from being able to lift it but not for long? Perhaps it's more of a neurological problem? But I'm no doctor so I really don't know. Sorry.

@Lindberg I am wondering about this, too, and if I cannot lift my legs in that test b/c of a neuromuscular issue vs. de-conditioning? And I don't mean that de-conditioning is the cause of my illness vs. the result of using a wheelchair for two years (in Oct).

In my case it was clearly a mitochondrial problem since the muscles did work but couldn't perform repeatedly. Perhaps that's why Q10 has made a big difference for me? I only get good result at from the q10 if it also contains oil of some sort though, dryed q10 doesn't make any difference at all for me. It needs some fat for the uptake.

The Q10 that I took was also in a fatty/oil capsule plus and was not the dried kind but it still did nothing for me- good or bad.

 

[Dechi]

@Gingergrrl Perhaps not being able to lift the leg up at all is a different thing from being able to lift it but not for long? Perhaps it's more of a neurological problem? But I'm no doctor so I really don't know. Sorry.

In my case it was clearly a mitochondrial problem since the muscles did work but couldn't perform repeatedly. Perhaps that's why Q10 has made a big difference for me? I only get good resultat from the q10 if it also contains oil of some sort though, dryed q10 doesn't make any difference at all for me. It needs some fat for the uptake.

@RinkyInky You nailed my doctors words! It was very much: you are doing the right things, keep on doing that... So, no program unfortunately.

@Lindberg what is the exact supplement you're taking if you don't mind ? I am out of dry q10 and would like to try it. Is it Ubiquinol ?

 

[Lindberg]

@Dechi Yes, it's Ubiquinol: "Bio-Quinon Q10 Gold", Pharma Nord. 300 mg per day, sometimes more sometimes less depending on what I'm doing that day.

It hasn't made me all well though! It's not like I don't still suffer from PEM. Pacing is still very much needed. But it has helped me raise my function level and it helps me to recover faster from PEM.

 

[justy]

I can lift my legs in both foot positions easily, which surprised me as im house/wheelchair bound with gentle pottering in the house for many eyars now.

 

[Gingergrrl]

I can lift my legs in both foot positions easily, which surprised me as im house/wheelchair bound with gentle pottering in the house for many eyars now.

That is so interesting b/c I cannot do it at all but you can do it easily, so wheelchair use is not the reason. I am curious if you don't mind me asking, what do you mean by pottering?

It's not a term I am familiar with and want to use it as a basis of comparison to me when I eventually discuss this leg exercise with Neuro in the future. I can stand/walk for approx 30-60 seconds with my best effort but I am not sure if that is pottering (sorry if dumb question)!

 

[Dechi]

@Dechi Yes, it's Ubiquinol: "Bio-Quinon Q10 Gold", Pharma Nord. 300 mg per day, sometimes more sometimes less depending on what I'm doing that day.

It hasn't made me all well though! It's not like I don't still suffer from PEM. Pacing is still very much needed. But it has helped me raise my function level and it helps me to recover faster from PEM.

Thanks, I'll try it. I haven't had PEM in almost 3 months now. Probably a combinatiom from nimodipine, supplementation, pacing, measuring my AT and HRV. I know Q10 is part of the mito coktail so I want to keep taking it.

 

[Dechi]

@Lindberg there not available in Canada, but most importantly, the're not Ubiquinol.. They are Ubiquinon. I can't remember why, but I know it's important that we consume Ubiquinol, not ubiquinon. I can ask people who are more knowledgeable if you're interested.

 

[daisybell]

Toes pointed I can do this. With toes up towards the ceiling, I can only just manage to lift my legs,and several attempts...

 

[Valentijn]

It's really an abdominable muscle thing. The failure of those muscles to engage was a pretty sudden phenomenon at the beginning of my ME. It wasn't deconditioning ... just suddenly I had trouble standing up, and mostly had to use my arms to compensate.

Those muscles also came back pretty quickly several years later after taking IV antibiotics for Lyme. No idea why.

 

[Lindberg]

@Lindberg there not available in Canada, but most importantly, the're not Ubiquinol.. They are Ubiquinon. I can't remember why, but I know it's important that we consume Ubiquinol, not ubiquinon. I can ask people who are more knowledgeable if you're interested.

Thank you, I didn't know about the difference but read about it now. I have had such good effect anyway (but it takes 6 hours before it kicks in) so I never thougth about it. Now I will definitely try the other kind!

 

[justy]

what do you mean by pottering?

I guess that 'pottering' should go in the UK/US dictionary thread

move around without hurrying, and in a relaxed and pleasant way:
I spent the afternoon pottering around the garden doing a few odd jobs.
He doesn't drive very fast - he tends to potter along.
Thesaurus: synonyms and related words
Moving gently on foot

http://dictionary.cambridge.org/dictionary/english/potter

 

[Wendymay]

@Tilney you said this was a possible test of meningitis and I was wondering if you have more info on that?

I just got home from 8+ hours in the ER trying to determine if I have some form of meningitis from IVIG (all doctors said I do not) but I just tried your test out of curiosity while lying flat in bed and for the life of me, I cannot raise my legs in either position (pointed toes or flat toes). If you offered me a million dollars, I cannot do it.

No doctor has ever asked me to try this and I when I just read your post, I actually thought there was a chance I could do it but it is physically as impossible as me walking on water LOL. No idea if this confirms I really do have ME/CFS or if I just have incredibly weak muscle strength which I already knew.

I just tried that and can only get about one inch off the bed

 

[daisybell]

I guess that 'pottering' should go in the UK/US dictionary thread



http://dictionary.cambridge.org/dictionary/english/potter

That's how I describe my abilities these days. Pottering is my specialty!

 

[Gingergrrl]

Thanks @justy and I had Googled "Potter" but when it gave an example of someone driving slowly (seated) I was not sure if the word related to standing versus just doing any task slowly.

I can work on computer for eight hours, pay the bills, organize family events and do any seated tasks but can't stand/walk. Since I knew you use wheelchair too (but you can do the leg exercise easily and I can't do it at all), I was trying to compare us but am still not sure!

I guess mine is a combo of something neuromuscular plus de-conditioning from the illness?

 

[Gingergrrl]

I just tried that and can only get about one inch off the bed

Glad I am not the only one LOL! Do you also use a wheelchair? Am just curious (and please don't respond if not comfortable).

 

[RinkyInky]

Thanks @justy and I had Googled "Potter" but when it gave an example of someone driving slowly (seated) I was not sure if the word related to standing versus just doing any task slowly.

I can work on computer for eight hours, pay the bills, organize family events and do any seated tasks but can't stand/walk. Since I knew you use wheelchair too (but you can do the leg exercise easily and I can't do it at all), I was trying to compare us but am still not sure!

I guess mine is a combo of something neuromuscular plus de-conditioning from the illness?

Do you get aches in your lower back when sitting too? I can walk and I can lift my legs while lying down though it is tiring. I also find standing in the same position more tiring than walking due to my back and possibly my balance (which seems to be a concern in mito patients, bad balance). I've checked a few websites and I have most of the symptoms listed, but I'm not sure how reliable the info is.

 

[Gingergrrl]

Do you get aches in your lower back when sitting too? I can walk and I can lift my legs while lying down though it is tiring. I also find standing in the same position more tiring than walking due to my back and possibly my balance (which seems to be a concern in mito patients, bad balance). I've checked a few websites and I have most of the symptoms listed, but I'm not sure how reliable the info is.

I do not get any aches in my lower back when seated although I get arm/neck pain from a prior injury if I use my arms too much. In general my arms are much weaker than my legs which is partially why I was so surprised that I cannot do this test.

 

[RinkyInky]

I do not get any aches in my lower back when seated although I get arm/neck pain from a prior injury if I use my arms too much. In general my arms are much weaker than my legs which is partially why I was so surprised that I cannot do this test.

Do you have poor grip strength as well?