Dechi
Senior Member
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@Gingergrrl Are you able sit from a lying position just by using your core muscles or do you need your hands to do so ?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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!
@Gingergrrl Are you able sit from a lying position just by using your core muscles or do you need your hands to do so ?
I tried again yesterday and found I could do it if I adjusted my back position, but not otherwise.
When I started this thread I didn't know there would be something that I could suggest that allows me to lift my legs... a nice cold 2 litre bottle of Diet Pepsi I drank it & went to bed. I got hot in the night woke up & kicked the bed cover off. I was just about to doze back off when I realised what I had done & spent the next few minutes lifting my legs but didn't wake the hubby up. When I tried to show him the next morning it didn't work & my legs wouldn't budge so off he went to get another bottle... I drank the bottle & lifted my legs then left it a few hours and I couldn't lift my legs I have tried it again and it still works but the effect soon wears off and there appears to be a down side as once the effect has worn off I feel worse than normal so be warned if you want to try it. In the UK they manufacture a caffeine free version but it contains Phenylalanine
I have never drunk tea or coffee - I was offered it as a child but took a mouthful & refused to drink it
The first bottle of Diet Pepsi had caffeine in it but the second two bottles were caffeine free so its definitely not the caffeine.
I don't think its a core muscle problem I believe its a problem signalling the legs to lift.
About the pepsi, it most likely has to do with sugar.
Carbonated Water
Colour (caramel E150d)
Acids (Phosphoric Acid, Citric Acid)
Sweeteners (Aspartame, Acesulfame K)
Flavourings
Acidity Regulator (Sodium Citrate)
Preservative (Potassium Sorbate)
Contains a Source of Phenylalanine
I don't think anyone should be trying this. @Gingergrrl
Drinking soda definitely improves my muscle strength and energy slightly but it's also a MCAS trigger for me so it's not worth it.
Sorry for the lack of technical knowledge but is MCAS an abbreviation of Middle cerebral artery syndrome?
@Gingergrrl Are you able sit from a lying position just by using your core muscles or do you need your hands to do so ?
Sorry about that. It's mast cell activation syndrome.
My core muscles are probably even weaker than before i got the bed lift from lack of use but i'm so much more well because of not using them or attempting to
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.
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.
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)!