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

Ysabelle-S

Highly Vexatious
Messages
524
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!

I tried again yesterday and found I could do it if I adjusted my back position, but not otherwise. The previous day I couldn't do it. It's strange, but I'm not sure changing position of my back is the best option. At least it worked though, but I could feel my legs still paying for the first attempt for the rest of the day and yesterday.
 
Messages
49
When I started this thread I didn't know there would be something that I could suggest that allows me to lift my legs.
It was very hot a little while ago and I came across 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.
After letting the bubbles dissipate down 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
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl Are you able sit from a lying position just by using your core muscles or do you need your hands to do so ?

@Dechi, I am not certain if I understand your question. Do you mean can I maintain sitting up (on bed, in wheelchair or desk chair, etc) without requiring my hands to hold up my weight, or do you mean if I am lying flat and need to get up, do I use my hands to prop myself up? For the first question, I have absolutely no issue being in a seated position and can sit in the car (as the passenger) for as long as needed (even a 6-8 hour car trip). But if I am getting up from lying down, I use my hands/arms to help prop myself up or my husband helps me to get up if I am not strong enough to do it (which varies).

I tried again yesterday and found I could do it if I adjusted my back position, but not otherwise.

@Ysabelle-S Am curious, what did you do to adjust your back position that made it work?

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

@Tilney That is so interesting and I wonder what the Diet Pepsi is doing that allows you to do the leg lifts? I have not been able to drink any soda or diet soda in about 1.5 yrs (since my MCAS began) b/c at least in the US, they all contain preservatives and food dyes that I am allergic to. I also do not tolerate caffeine but there are caffeine free versions (if I could tolerate the preservatives and dyes which at this point I cannot). There is one brand of natural Ginger Ale that I am able to drink without allergic reaction but I doubt this would have any effect on the leg lifts. Do you think it is the caffeine or something else? If you drink coffee (which I cannot b/c of tachycardia/POTS) does it allow you to do the leg lifts? Can you remind me, in your case, does it feel like a problem with your core muscle strength or a problem with your brain not being able to signal your legs to lift?
 
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49
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.
 

Gingergrrl

Senior Member
Messages
16,171
I have never drunk tea or coffee - I was offered it as a child but took a mouthful & refused to drink it

I drank coffee and tea all of my life before getting ill and developing this caffeine intolerance, POTS, and MCAS. Now I can only drink certain flavors of decaf tea like Peppermint, Ginger, Rooibos, etc, but they have no bearing on the ability to do the leg lifts.

The first bottle of Diet Pepsi had caffeine in it but the second two bottles were caffeine free so its definitely not the caffeine.

That is fascinating and I wonder if it is the phenylalanine? It can't be the carbonation b/c I drink sparkling water every day with no affect.

I don't think its a core muscle problem I believe its a problem signalling the legs to lift.

I think mine is a signaling problem to lift the legs as well as my core muscles being weak. I see Neuromuscular doc on 10/5 and will definitely be asking her opinion of this. I am certain she does not grasp the extent of my disability b/c she saw me seated in wheelchair and I was speaking very clear and coherently. But if she had me stand or walk or try the leg lifts, she would see quickly how impaired I am.
 

Ysabelle-S

Highly Vexatious
Messages
524
I think when I couldn't do it, I was trying to lift my legs without engaging my back to help. I found that if I moved my back or even just focused more there, I could lift my legs. Tried it again today, and couldn't lift legs if I just focused on the legs, but could do it with the help of my back. Not sure my position would have looked much different if at all to someone watching though.
 

Dechi

Senior Member
Messages
1,454
This leg exercise thing is a hard one to do for anyone one. It your core muscles are not strong enough, it puts a lot of strain on your back.

I don't think anyone should be trying this. @Gingergrrl I meant no 2. I was trying to assess the strenght of your abs and core muscles.

About the pepsi, it most likely has to do with sugar. The energy production cycle uses sugar as fuel, in the aerobic psrt of it. @Tilney If this works for you, I suggest you look at your eating habits and how you can use food to give you more lasting energy. Some people with ME do better on high carb diets. Eating complex carbs would provide you with lasting energy fuel. You never know...
 
Messages
49
The label on a bottle of caffeine free Diet Pepsi states the ingredients as

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

Per 100ml -
Energy 0.6kcal
Fat 0g
of which Saturates 0g
Carbohydrate 0g
of which Sugars 0g
Protein 0g
Salt 0.05g
 

Gingergrrl

Senior Member
Messages
16,171
About the pepsi, it most likely has to do with sugar.

It can't be the sugar b/c @Tilney is drinking diet pepsi which has no 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

The ingredients are slightly different than the American version but in general, I could never drink this b/c am allergic to Sodium Citrate, very allergic to Potassium Sorbate, and most likely allergic to Carmel Color (food dye) although I have not tested out this particular dye.

I don't think anyone should be trying this. @Gingergrrl

@Dechi and all, it is the weirdest thing on earth, that I have no explanation for, but last night and this morning I am able to do the leg lifts! I can do the complete leg lifts with both legs in both positions (toes pointed & flexed) with ease. I focused on my abdominal muscles vs. my legs like @Ysabelle-S said and this was helpful.

I will mention everything that could have possibly contributed but it also may just be random and by tomorrow, I will not be able to do them again. My MCAS is dramatically better again (I believe this is from IVIG) so two nights ago my husband and I ordered Chinese Food (take-out) for the first time in 1.5 years. I ordered only foods that I tolerate (chicken, two safe veggies and plain rice) and had no allergic reaction. However, sadly the food had MSG even though we'd mistakenly thought this particular restaurant did not use MSG.

I had a horrible reaction with chest pain, stomach pain and nausea, muscle cramping, complete insomnia, etc, and I have an antibody (GAD65) that already means I do not convert glutamate to GABA (so adding glutamate in MSG was bad and a mistake I will not make again). I ate zero food the next day so my stomach could recover. Last night I was much better except for continued severe muscle pain in my legs which kept me awake. So I was trying everything I could to stretch and massage my legs and they were moving with ease. So I decided to try the leg lifts in the middle of the night (first with just one leg) and it was so easy that I tried both and it was also easy! I was in shock and the only thing I can think of is that the MSG reaction gave my muscles energy or fasting for a full day gave my muscles energy?

By this morning I was starving and was able to eat a gluten free English muffin w/almond butter, an apple, and milk with no pre-food meds and no allergic reaction and I can still do the leg lifts. I showed my husband and he was shocked that I could prepare the food myself and do the leg lifts. I am typing all the boring details just in case they are relevant. I don't quite know how any of this would allow the leg lifts any more than the diet pepsi (unless it just goes to show how weird our bodies are :eek:)! I almost feel like if I fast every other day, I will do better overall and might test this theory out.
 

Sidereal

Senior Member
Messages
4,856
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.
 
Messages
49
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?
 
Messages
1,082
Location
UK
@Gingergrrl Are you able sit from a lying position just by using your core muscles or do you need your hands to do so ?

Its interesting thinking about this because, a couple of years ago social services gave me an electronic bed lift as i was unable to sit up easily to get out of bed. I couldnt use my arms either to push up so always had to roll onto my side and slide onto the floor to get out of bed. I never stopped trying to sit up properly though, just couldn't do it.

With the bed lift, it bends roughly at the waist and using a button i can go from flat to sitting up and everything inbetween. Fantastic for POTS and migraine.

Ever since using this device and therefore not trying to use my core muscles at all when in bed. My health has improved quite a lot. The bed lift has been a life saver for me.

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 :confused:
 

Gingergrrl

Senior Member
Messages
16,171
Sorry about that. It's mast cell activation syndrome.

Sorry, I use the abbreviation a lot too and try to write "mast cell disease" when I think of it but often forget.

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 :confused:

That is interesting and I have never used a bed lift so I know this is not a factor in my case (but it makes sense in yours)! I cannot figure out why I can do the leg lifts today but I know it will reverse again and this is not permanent.
 

erin

Senior Member
Messages
885
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)!

Sorry for the late reply, I am not so good recently.
The breathing problems I had was 10 - 11 years ago. I can't remember the details much.
I was having so many many chest infections and I couldn't breath well. My GP sent me for a lung capacity test. Result was normal. But my GP knew something was not right. She suggested alternative medicine, I was sent to Homeopathic Hospital since modern medicine tests did not show any fault in my upper respiratory system. I think I used a remedy called Ozonium and it helped.

Good luck with IVIG.
 

Gingergrrl

Senior Member
Messages
16,171
Thanks @erin and no worries on delayed reply. Your breathing issues sound different b/c you had some kind of chest infection but I do not. I think mine is both autonomic and neuromuscular and I cannot pass the lung capacity tests in any form to save my life. Thanks for the good wishes for my next IVIG and hope you feel better soon.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
I haven't read the whole of this thread but remembered it today in a neuro appointment where I couldn't lift my legs when straight.

I also couldn't do this one
http://forums.phoenixrising.me/inde...i-need-your-insights.44812/page-6#post-803002

Can you do that?

It doesn't seem like anyone on here worked out what this is testing. It seems odd if just strength as some of the testing on me seemed fine and then there were a couple I couldn't do at all.