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

[Dechi]

@Gingergrrl what do you mean you have " absolutely no core muscle " ? Were you muscles surgically removed for medical reasons or are they just not developed ? If the latter, this is fixable.

As for muscle relaxant cream, there is Naproxen here in Canada. You might have access to something similar in USA.

 

[Gingergrrl]

@Gingergrrl what do you mean you have " absolutely no core muscle " ? Were you muscles surgically removed for medical reasons or are they just not developed ? If the latter, this is fixable.

Sorry I didn't explain well! I have the muscles but they are weakened due to this autoantibody which makes my lungs and diaphragm in particular very weak (which is what I meant by "core'). I don't have the core muscle strength to pass a basic breathing test and EMG showed weakness of the phrenic nerve to diaphragm. Am hoping this improves as the autoantibodies are reduced with treatment but for now it's only a hope! Short of that, am not sure of anything else that can change it.

As for muscle relaxant cream, there is Naproxen here in Canada. You might have access to something similar in USA.

I am very allergic to Naproxen and have tried it in pill form and also once tried Voltaren Gel. I think this is b/c of MCAS I don't tolerate this class of meds. But your post reminded me that I have a magnesium spray that does help muscle pain and I just used the TENS unit which helps temporarily. Really, I should not be typing but I am stubborn.

 

[Dechi]

Don't answer me anymore ! I wish you a speedy recovery.

 

[Gingergrrl]

Don't answer me anymore ! I wish you a speedy recovery.

Thanks @Dechi and it turns out that I injured my lower back even more than my neck from attempting those leg lifts! It feels like a sharp knife is inside of my lower back making it hard to sit in a chair (which is usually not an issue for me and my desk chair and motorized wheelchair are both very soft/padded). So now I am going to see my chiropractor on Weds so he can hopefully fix whatever I did. If I ever get well enough to do exercises, I will need full body PT b/c my muscles are incredibly weak and injure with the slightest wrong move. But if I reached that point, I would also be very grateful and take on the challenge (but am nowhere close yet).

 

[Sushi]

it turns out that I injured my lower back even more than my neck from attempting those leg lifts!

Trying to raise both legs while lying flat is a big strain on the back. It is not usually advised unless you are sure that your muscles are strong enough. Lifting one leg at a time does not stress the back nearly as much.

 

[Gingergrrl]

Trying to raise both legs while lying flat is a big strain on the back. It is not usually advised unless you are sure that your muscles are strong enough. Lifting one leg at a time does not stress the back nearly as much.

Yes and it was idiotic on my part in retrospect. I was using it as a test to see if my strength had improved post-IVIG, and it definitely has, but I will not be attempting the leg lifts again as my core muscle are too weak and it messed up my back and neck. If anything, I will just do gentle stretches from a seated or lying position and maybe the leg lifts with just one leg at a time. There are other ways that I can measure small improvements in my muscle strength without injuring myself.

 

[Dechi]

Yes, @Gingergrrl there are safe ways for you to exercise. I am sure you will get better, with time and patience.

 

[Gingergrrl]

I wanted to post an update re: the leg lifts since I was able to do them in Aug after my 2nd IVIG infusion. I decided to try them today and not only could I not do the leg lifts in either position, I could not even lift each leg separately again! I attempted with all my strength and all that happened is that it hurt my neck and my shoulder and arm muscles began shaking.

My husband put his hand on my abdominal muscles as I was telling my brain to instruct my legs to move and with all the force in me, he said that my abdominal muscles do not move or contract whatsoever. And not b/c my stomach is flabby or untoned (which it is ) versus that they simple do not respond to the command from my brain. And oddly enough my third IVIG (at the higher dose) was not effective and I have seen no benefits from it and had bad side effects from the steroids. Whereas with the lower dose of IVIG, I had a three week remission of MCAS, I could do the leg lifts, I had improved blood pressure, I had improved arm strength, etc.

So it appears the lower dose might be more effective for me although I have no idea why. I do not see the neuromuscular doctor for 2-3 more weeks but this leg lift issue and my complete lack of being able to contract my abdominal muscles is high on my list of questions b/c it must relate to the weakness in my diaphragm. I am so grateful to this thread b/c the Neuro tested my arms and legs while I was in wheelchair and I could do most of her tests and I want to show her the stuff like this which I cannot do.

 

[Ysabelle-S]

Well, I just tried this and I had real problems. I could raise my feet/legs just a few inches, and then no further, and it took real effort. But then I couldn't raise them any more. Bizarre.

 

[Hell...Hath...No...Fury..]

This is bizarre. I thought i could do this easily as i'm sure i've done it before.
But from the bed, i can't lift them at all today. I can get my feet off the bed but the backs of my calves are still in contact with the bed

 

[Ysabelle-S]

This is bizarre. I thought i could do this easily as i'm sure i've done it before.
But from the bed, i can't lift them at all today. I can get my feet off the bed but the backs of my calves are still in contact with the bed

Yes, same here, my calves are still on the bed. I thought I'd be able to do this easily too.

 

[Gingergrrl]

Exactly as I was last night. I could manage to lift only my feet off the bed but not my calves, no matter how hard I tried. It was as if my brain could not manage to give the signal to my legs to lift even an inch off the bed. It kind of scared me again!

 

[erin]

Exactly as I was last night. I could manage to lift only my feet off the bed but not my calves, no matter how hard I tried. It was as if my brain could not manage to give the signal to my legs to lift even an inch off the bed. It kind of scared me again!

I feel exactly the same. It is not a muscle problem, it is a brain command problem.

 

[Gingergrrl]

I feel exactly the same. It is not a muscle problem, it is a brain command problem.

Yes @erin and this is what I was feeling last night! Can you remind me, do you use a wheelchair or have breathing problems?

I am feeling lately that there is not a traditional problem with my heart or lungs yet I am completely disabled and it is beyond dysautonomia (which I also have). I had to have an EKG and Echo this morning (long story but am suspecting the results will be normal). I am truly starting to feel that I have a neuromuscular problem and there are certain issues (like the leg lifts or trying to breath while standing) in which my brain is not giving my legs or my diaphragm the proper signal.

There is no reason that I should not be able to lift one individual leg (not both together, just one!) off of the bed. Even just lifting the foot, it was like my brain could not tell my foot to do it. It was so odd and last month after IVIG, I could do the entire leg lift with both legs!

I wish I could interpret what this means and cannot wait to see the Neuromuscular doc in Oct and see what she makes of the leg lift issue. I will definitely report back on her opinion.

 

[erin]

@Gingergrrl I don't use a wheelchair and I don't have breathing problems either. I had breathing problems in the beginning. I had lung capacity test, tests for viruses in the throat and nothing showed abnormal.
My "showing" problems are:

heart rthym problem, that I use betablockers daily

Hashimoto's tyroid diagnosed but nothing done about it

vitamin B deficiency I take injections 3 monthly and I don't think this amount is sufficient for me

very stiff neck I was told due to herniated discs on my neck prescribed pain killers but not take them as they ruin my digestion

and lastly I have Lichen Sclerosis that nothing yet helped

My other problems have not been diagnosed are, sporadic extreme fatigue and brain fog. Frequent digestive issues and constant vertigo in various intensity.

My symptoms are different than yours. I practice very mild yoga, I can use my legs to a highish degree. They feel usually little heavy and limp at times, not much muscle tone nowadays. But I am very sure not being able to lift my legs is not due to my muscles. I can't lift is not enough description. When I tried, I didn't even struggled. I feel the command did not even reach to my brain, let alone to my legs. There's a communication problem in my body.

 

[Gingergrrl]

@Gingergrrl I don't use a wheelchair and I don't have breathing problems either. I had breathing problems in the beginning. I had lung capacity test, tests for viruses in the throat and nothing showed abnormal.

Thanks @erin for the detailed reply and I was curious how similar our other symptoms lined up. When you said you had breathing problems in the beginning, what were they like? My lung capacity tests (in all forms) are an abysmal failure and we are just about certain now that this is due to neuromuscular problems (but not sure if this leg test issue relates and plan to find out). I test positive for several viruses via blood tests (not in the throat per se) but not sure if this relates either.

heart rthym problem, that I use betablockers daily, Hashimoto's tyroid diagnosed but nothing done about it, vitamin B deficiency I take injections 3 monthly and I don't think this amount is sufficient for me, very stiff neck I was told due to herniated discs on my neck prescribed pain killers but not take them as they ruin my digestion and lastly I have Lichen Sclerosis that nothing yet helped

We do have similarities in that I have POTS and take beta blocker daily, I have Hashimoto's, I have had low Vit B, I have very stiff/painful neck with disc problems from prior car accident but I do not have lichen schlerosis.

My symptoms are different than yours. I practice very mild yoga, I can use my legs to a highish degree. They feel usually little heavy and limp at times, not much muscle tone nowadays. But I am very sure not being able to lift my legs is not due to my muscles. I can't lift is not enough description. When I tried, I didn't even struggled. I feel the command did not even reach to my brain, let alone to my legs. There's a communication problem in my body.

I cannot do any yoga but yet my legs are still stronger than my arms. And I agree with your description that to say you could not lift your legs is not enough. It is not even a struggle vs. that the command from your brain does not reach your legs. This is exactly my experience except after my second IVIG when I was able to do the full leg lift with both legs together. I did not do it gracefully or easily and injured my spine/neck in the process, but I did it and now I cannot. I am going to test it out again after my 4th IVIG. My mast cell doctor said that "IVIG peaks after the 4th dose" so I am curious how my body reacts to the 4th dose or if it improves my muscle strength or breathing to any degree (but am prepared for it not to and don't want to go too far off topic)!

 

[Glycon]

Just tried the leg thing.

GODDAMMIT!!!

 

[Gingergrrl]

So, I take it @Glycon, @Ysabelle-S and @Hell...Hath...No...Fury.. that you guys cannot do the leg lifts whatsoever either? Do you feel that it is a core muscle strength problem or a problem of your brain not being able to give your legs the signal to lift? I really feel this is a critical piece of the puzzle (for me) and was curious what you guys think? Thanks in advance!

 

[Glycon]

So, I take it @Glycon, @Ysabelle-S and @Hell...Hath...No...Fury.. that you guys cannot do the leg lifts whatsoever either? Do you feel that it is a core muscle strength problem or a problem of your brain not being able to give your legs the signal to lift? I really feel this is a critical piece of the puzzle (for me) and was curious what you guys think? Thanks in advance!

1) These aren't mutually exclusive.
2) It's not the sort of thing one can just "feel".
3) I have no idea.

 

[Gingergrrl]

1) These aren't mutually exclusive.
2) It's not the sort of thing one can just "feel".
3) I have no idea.

That makes sense that someone could have a problem with both their core muscle strength and a signaling problem from the brain to the legs. I suspect I have both as my abdominal muscles do not move when I was trying to lift my legs and it seems like they should have for the effort I was putting in.

I guess when I said "feel" I meant I "suspect" based on my autoantibody and my understanding of how it might weaken the neuromuscular junctions combined with my inability to inhale a full breath or do these leg lifts. But I don't know for sure.