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

[Gingergrrl]

Do you have poor grip strength as well?

Yes, I have incredibly poor grip strength to the level that it shocks most doctors who test it. My right arm (even though I am right-handed) is the worst b/c of an injury to my right triceps tendon from an antibiotic in 2010.

 

[Wendymay]

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).

Hi there, no I don't use a wheelchair but I do have a stick for days when I'm in a lot of pain x

 

[Gingergrrl]

Hi there, no I don't use a wheelchair but I do have a stick for days when I'm in a lot of pain x

Thanks and I was just curious. I do not have any pain when I walk and my issue is that I cannot breathe when I stand up for more than a few minutes. My lungs just don't inhale a full breath and it's like I have run up a flight of stairs and get chest pain. This does not occur when I am lying flat nor seated and only when standing. Yet for the leg lift exercise, I am lying flat which is why I thought I could do it. It's very confusing to me and my mind can't quite let it go!

 

[RinkyInky]

Thanks and I was just curious. I do not have any pain when I walk and my issue is that I cannot breathe when I stand up for more than a few minutes. My lungs just don't inhale a full breath and it's like I have run up a flight of stairs and get chest pain. This does not occur when I am lying flat nor seated and only when standing. Yet for the leg lift exercise, I am lying flat which is why I thought I could do it. It's very confusing to me and my mind can't quite let it go!

it's quite mind boggling that you can't do it at all. My therapist recently mentioned that the lumbar (lower back) is connected to intestinal health, that's why I get backaches often and I usually get a slightly bloat in my small intestine (lower duodenum area) at the same time. But you say you don't have any backaches so it might not be that for you.

 

[Gingergrrl]

it's quite mind boggling that you can't do it at all. My therapist recently mentioned that the lumbar (lower back) is connected to intestinal health, that's why I get backaches often and I usually get a slightly bloat in my small intestine (lower duodenum area) at the same time. But you say you don't have any backaches so it might not be that for you.

I agree and it was mind boggling to me as well but I cannot do it at all (and no back pain). Thanks for asking though!

 

[RinkyInky]

I agree and it was mind boggling to me as well but I cannot do it at all (and no back pain). Thanks for asking though!

If you're interested you could get a 23andMe test (if you haven't already). It's pretty cheap and I find it comforting to gather as much info as I can. You might like it.

You do have to find someone to interpret the results for you though as it is pretty complicated.

 

[Gingergrrl]

If you're interested you could get a 23andMe test (if you haven't already). It's pretty cheap and I find it comforting to gather as much info as I can. You might like it. You do have to find someone to interpret the results for you though as it is pretty complicated.

@RinkyInky I did 23andMe in 2014 and we put the results into Genetic Genie and Livewello but I truly lack the skills to interpret them on my own. One of my doctors interpreted some basics for me and I learned that I am a slow liver detoxer of the CYP2D6 pathway, my Vit D is messed up, etc.

But as far as how it would relate to me not being able to do these leg lifts, I would not have a clue what to look at! All I know is that my brain tells my legs to lift but the max I can actually lift on my own is just my feet off the bed/floor and not the leg.

There are many activities in which I can "force" myself beyond my ability, but this is not one of them, and if you offered me a million dollars, I cannot do the leg lifts (like I cannot pass a spirometry/breathing test) and don't know why.

 

[RinkyInky]

@RinkyInky I did 23andMe in 2014 and we put the results into Genetic Genie and Livewello but I truly lack the skills to interpret them on my own. One of my doctors interpreted some basics for me and I learned that I am a slow liver detoxer of the CYP2D6 pathway, my Vit D is messed up, etc.

But as far as how it would relate to me not being able to do these leg lifts, I would not have a clue what to look at! All I know is that my brain tells my legs to lift but the max I can actually lift on my own is just my feet off the bed/floor and not the leg.

There are many activities in which I can "force" myself beyond my ability, but this is not one of them, and if you offered me a million dollars, I cannot do the leg lifts (like I cannot pass a spirometry/breathing test) and don't know why.

Hi, did your doctor put you on any programme based on your genetic mutations? If he did, how was it?

 

[Gingergrrl]

Hi, did your doctor put you on any programme based on your genetic mutations? If he did, how was it?

No, have never been on a program based on genetic mutations and I don't know of any doctors who do that. I also suspect the triggers of my illness were not genetic vs. an injury from an antibiotic followed by a virus followed by mold exposure, etc. Although I have no doubt that my genetics played a role.

 

[RinkyInky]

No, have never been on a program based on genetic mutations and I don't know of any doctors who do that. I also suspect the triggers of my illness were not genetic vs. an injury from an antibiotic followed by a virus followed by mold exposure, etc. Although I have no doubt that my genetics played a role.

The Naturopathic Doctor that I'm seeing right now has put me on a programme for my 23andMe results but this method of treatment is very new to her as well. I'll be following the programme for the next 6 months to see if there is any improvement. Fingers crossed!

I believe my illness is largely genetic as I have been sick my whole life and my mother showed similar symptoms (though not as bad as mine) when she was alive. I also had a vaccine reaction when I was 18 months old which included a high fever followed by fits.

 

[Gingergrrl]

@RinkyInky That is interesting and please keep me posted, am curious how the program with your naturopath goes and if it ends up that you are able to do the leg exercises at the end (meaning maybe it was a genetic or mito problem in your case)?

I am sure these are all factors in my case as well except that I did not become sick until much later in life (early 40's) and my parents are both still in great health today.

 

[RinkyInky]

@RinkyInky That is interesting and please keep me posted, am curious how the program with your naturopath goes and if it ends up that you are able to do the leg exercises at the end (meaning maybe it was a genetic or mito problem in your case)?

I am sure these are all factors in my case as well except that I did not become sick until much later in life (early 40's) and my parents are both still in great health today.

I can do the leg exercises now, but I suffer from very weak muscles and very little muscle mass (ribcage, hip bones spine can all be seen clearly), so I'm experiencing the same thing as the other guy, whereby I can do it but it's just tiring which seems to be different from your case.

But I'll definitely update you on the effectiveness of the genetic programme, it should help even if a little as healthy, non-mutated genes will definitely support recovery (think that's why some people fall sick easily and others have immune systems like tanks) and different approaches can be recommended for different genetic mutations.

 

[sorin]

In my case I am almost semi-paralyzed during night-time. If I have to wake up suddenly after I have fallen asleep I would hardly be able to move my legs or arms. This improves dramatically in the day-time, after 30 min from wake up in the morning I am quite well to move my feet and arms for the rest of the day. I wonder if someone else experience such neurological problems during the night-time?
Another thing that I noticed is that my fatigue increases a lot after lunch, so in the morning I am relatively ok and a couple of hours after lunch, even I do not sleep at all after lunch. I do not know if this is also common to other people having CFS.

 

[Wendymay]

I find that eating exhausts me. It's as if the digestion process uses up my energy. I'm good in the mornings too but flag as the day goes on. Come 9pm I come alive and can't sleep !

 

[trails]

Many people have exaggerated responses to diphenhydramine, an over-the-counter medication (Benadryl, Dramamine, Nytol), normally considered quite safe. While this is primarily considered an antihistamine, I would point out that it is also antagonist for all classes of muscarinic acetylcholine receptors. I'm wondering if the people with the kind of limitation Gingergrrl describes also have exaggerated responses to diphenhydramine. This is what I would expect if they had antibodies to muscarinic acetylcholine receptors.

@anciendaze, I have always had a fairly severe paradoxical reaction to Benadryl and other histamines. That is, they make me extremely wired, agitated, and genereally feeling as if I'm crawling out of my own skin. Is this the "exaggerated response" to which you are referring? If not, do you think that this paradoxical reaction could also be somehow related to muscarinic acetylcholine receptors?

I'd appreciate any thoughts or speculation you might have. Thank you!

 

[anciendaze]

@anciendaze, I have always had a fairly severe paradoxical reaction to Benadryl and other histamines. That is, they make me extremely wired, agitated, and genereally feeling as if I'm crawling out of my own skin. Is this the "exaggerated response" to which you are referring? If not, do you think that this paradoxical reaction could also be somehow related to muscarinic acetylcholine receptors?

I'd appreciate any thoughts or speculation you might have. Thank you!

That sounds like the kind of thing I'm chasing. Another possibility is that you have a problem with sodium channels, which are also affected. Strange responses to antihistamines can go along with mast cell disorders. I'm just taking a shot in the dark. I won't speculate further because I'm already out on a limb.

 

[Gingergrrl]

@anciendaze, I have always had a fairly severe paradoxical reaction to Benadryl and other histamines.

I have had this response to Benadryl but for whatever reason, I do not have this response whatsover to Atarax, Zyrtec, Ketotefin, or any other antihistamines and H1 blockers that I have tried- it is solely with Benadryl. Do you get it with all antihistamines or only with Benadryl?

 

[trails]

I have had this response to Benadryl but for whatever reason, I do not have this response whatsover to Atarax, Zyrtec, Ketotefin, or any other antihistamines and H1 blockers that I have tried- it is solely with Benadryl. Do you get it with all antihistamines or only with Benadryl?

@Gingergrrl, now that you mention it, I don't recall ever taking any antihistamines other than Benadryl...so for me, thus far, I can only attest to the reaction to Benadryl. It is quite severe and as a result don't (can't) even use common cold medicines that contain it.

@anciendaze, I appreciate your response and willingness to throw out a few ideas!

 

[ahmo]

I've come back here to say that I can now raise my legs while pointing with no problem. I didn't try it again until a couple weeks later, but have doe it a few times since. It seems as if it might be a learning thing, it's gotten progressively easier.

 

[Sushi]

It seems as if it might be a learning thing, it's gotten progressively easier.

I think for most who don't have any specific muscle problems the learning thing is tight abs, tight butt and practice.