Leg Weakness

[firewatcher]

A previous post has caused me to think about this. I also have inappropriate leg weakness. My thighs and calves have shrunk and simply won't do what I could easily do before my POTS crash in 2007. I was also fit when all this started. I have now been taking Pilates for almost two years and it isn't any better. I recently tried Tai Chi, but my legs were shaking and would barely support me after the first session.

How many of us have similar symptoms? Have any of you found a fix? Even exercising while supine doesn't work, my legs just give out.

Any thoughts?

[potsgirl]

My leg weakness comes and goes. Some days it's really bad, and I feel like I'm walking through deep water and my legs feel like they won't support me - and sometimes they don't and I fall on my behind. I was doing the treadmill 3 or 4 times a week for awhile (have one at home) and now I can only do it 2, maybe 3 times a week. I have a lot of pain in my feet and knees, too, so that doesn't help.

Do you try to work on building up your lower leg muscles? Standing on a stair and raising up and down (while holding onto bannister!) or a step/curb whatever works? I think we just get so weak and deconditioned in some cases, we have to start really small to re-build those muscles. Sometimes, nothing seems to work for me, either.

You're not alone, just keep trying as much as you can. Don't give up! We're here to encourage and support you.

[Noreen]

Do you notice any difference wearing your compression garments vs. not?

[Nikki]

I have the same problem. Some days are worse than others but my legs definitely feel very weak most days - especially compared to how I was before all this started. I used to do a lot of cardio workouts and kickboxing type of stuff..Tons of lunges and squats and never had a problem. Now sometimes just walking to do everyday things makes them ache. I find that wearing compression stockings really help though. My legs feel a lot stronger when I wear them. Have you ever tried them out?

[firewatcher]

I do wear compression and have done strengthening exercises, but I am just as weak as before with long lasting soreness.

[Noreen]

I do wear compression and have done strengthening exercises, but I am just as weak as before with long lasting soreness.

I knew you had been wearing compression garments and had, in fact, been doing a search this morning for the ones that had worked best for you. So my question was probably mostly curiosity.

For the soreness, I swear by Arnica gel. I know you are really looking for the answer or a solution but I can only offer support.

hope you find some answers,

noreen

[basktbal22]

I had leg weakness when my symptoms began- for no particular reason! And then, for no real reason (I had been exercising/lifting regularly all the time- even when my leg strength decreased), I started gaining strength back in my legs about 2 years later. Thus, the purpose of my post is to point out that there is always hope in terms of regaining leg strength. I think some of the most effective ways for someone with POTS to regain leg strength are calf work-outs and recumbent bikes/squats. It is also important to get plenty of protein throughout the day - in fact, one of the best foods to eat for someone trying to gain muscles before bed is cottage cheese! Many of my friends who lift weights regularly eat this stuff, for the casein-protein it provides. This protein is slowly digested so it gives a sustained release of muscle-building protein while one sleeps. Also, coincidentally, cottage cheese is high in sodium, so it may be a good choice- if you can handle dairy products.

[comfortzone]

I most assuredly have leg weakness - but my case has so many confounding elements I don't really know from where it stems. There's muscle insufficiency in my internal and external hip rotators....that for me means that stooping, bending, crouching, pulling the side of the bed to turn in bed, using a chair to peek into cupboards or the refrigerator are common very frustrating issues. I cannot get up out of any seat of normal height without relying on my arms.

This may be due in part to damage done during the bilat. hip replacements. There is also chronic S1, L5 radiculopathy on emg - yet I don't particularly know how this finding impacts my symptoms or functioning. There are also two knee replacements in the picture.

Additionally there is the hypermobility syndrome aka ehlers-danlos type 3 tossed in there and small fiber neuropathy.

What I can do is walk. And I walk as many miles a week that I can muster to keep being able to walk. I seem to lose any gains in fitness rapidly so must use my legs about daily in some fitness walking endeavor. This is a vicious cycle with pain control though - yuck.

Just a few months back they were trying to rule out all the normal causes such as MS, myasthenia gravis and those types of things. All of it is negative.

It is for me my biggest issue and torment. For two years I've had a buckling right knee in addition to the leg weakness issues and clinicians would constantly tell me to strengthen my quads etc.... I've had a solid two years of physical therapy but it does not improve the weakness - so this last time a doctor told me to strengthen my legs I broke down and cried. Which bought me a visit to yet another specialist - who agreed my legs ARE strong - and that's why I haven't fallen when the right knee buckles.

So how can you be strong .... yet weak at the same time? Talk about going crazy. In the morning I literally teeter around -- grasping all furniture and walls to be able to 'get going' -- it's pretty sad and to me quite dramatic to have to move like this at age 53 yet nothing definitive is wrong - well not one certain thing - more likely a bunch of little things....

I need cushions and seat elevation on toilets etc... on all surfaces. They tell me to not push with my arms because I am worsening my severe shoulder arthritis & rotator cuff issues .... but I have to use them -- so therein lies my wanting to jump off a cliff when I listen to all these doctors.

Then add the whole orthostatic issues and vasomotor instabiltiy -- while not labeled pots - I do much of the same treatment plan as many of you....I am on the hyperadrenergic end of all of these symptoms

Yes it does feel like to me that it's like trudgeing through quicksand or some such thing......like my legs weigh an absolute ton. That's why I am working fast and furious at weight loss ..... to help it maybe be easier to move ... though it doesn't feel like my weight is contributory to the leg heaviness at all.

Anyway - I would really like to know from your experiences which component of a dysautonomia picture would come into play in this leg weakness -- to maybe give me some clarity as well

Thanks

[janiedelite]

Yes, I have weakness in my legs, as well as my arms and hands. It's hard to know if the leg issues are due to the car accident and 2 subsequent hip surgeries, but the only cause of arms weakness I can think of is my POTS and the neuropathy associated with that (burning skin, allodynia, vasomotor dysregulation, etc). I have diminished deep tendon reflexes, pain and weakness along my S1 nerve path but no nerve root impingement. My EMG was a little abnormal in that region as well. All I know is that laying in bed makes me hurt worse, so I try to do as much as possible but also have a lot of fasciculations and pain especially toward the end of the day. Sometimes it feels like my legs will give out but they never have.

[issie]

Count me in on this one. I have severe leg weakness and trouble picking my feet up sometimes. I'm trying to get in with the doc. that arizona girl sees - neuro. And I have an appt. with the cardio that dani sees. Hoping to get more answers. I too have to have risers and my hubby built a box to put the recliner on so it would be higher. I too push up with my arms and it is hurting my shoulders. But, what else can you do? I have had this weakness for about 4 years now. It hasn't really gotten any worse, but shouldn't be for someone my age - I'm 50 going on 150. I too have alot of pain - ALL OVER. When I'm real bad a muscle relxr. and pain med helps.

[comfortzone]

Could we all be related ;-) ??? Makes me want to start a group home for this leg situation ~ that way I'd be understood by at least some very nice people! All the furniture would be super cool and super elevated - as everything else, grab bars to hang on to - and for really bad days maybe a couple of 'real' bars just to toss one back and say once again, "nowwhat!" Wow I had no idea so many of you had this as well!!!

I had the arm weakness for about a month - I couldn't hold onto a glass of liquids or it would spill, pots and pans were too heavy and I dropped everything I picked up it seemed... The diagnostics for that were limited to a neck MRI - and it did show severe cervical stenosis on the right and left at C3,4,5 & 6. But I couldn't afford the epidural injections they wanted to give to reduce nerve swelling in the neck - and truthfully that whole idea scared me to death. My arms at that time felt too heavy to hold just their weight. I wanted a sling for each of my arms just to walk. However the good news is for whatever reason those symptoms graudually went away and now I don't have them at all. That was the weirdest and scariest thing to deal with! But it truly only lasted about a month...or a tiny bit more perhaps.

[firewatcher]

I was checked for Myasthenia Gravis, but the test was inconclusive, in the zone between you don't have it and you do. So, the doc said I didn't. If I do nothing else, I can walk/exercise and do normal things like anyone else....one day a week. If I try to do more, I'm weakened and incredibly sore for days. A half a mile walk has never hurt my muscles this much in my life! I can't seem to make any gains at all, or achieve any conditioning. It is very frustrating.

[Noreen]

I was checked for Myasthenia Gravis, but the test was inconclusive, in the zone between you don't have it and you do. So, the doc said I didn't. If I do nothing else, I can walk/exercise and do normal things like anyone else....one day a week. If I try to do more, I'm weakened and incredibly sore for days. A half a mile walk has never hurt my muscles this much in my life! I can't seem to make any gains at all, or achieve any conditioning. It is very frustrating.

Have you been checked recently for fibro? With weather changes and at certain unknowable intervals I have incredible pain as you describe which has always been attributed to fibro. If you can get into a pool therapy program, that helps.

Generally, my feeling has been that occasional pain med relief is a good idea to stop the pain cascade that can then last for weeks.

Are you having more pain as you have adjusted your meds as you are trying the Eastern approach? Just wondering whether this is playing a part.

I saw this article in the NY Times recently on topical NSAIDS and have wondered whether it is worth pursuing.http://www.nytimes.com/2010/09/07/health/07pain.html?scp=1&sq=NSAIDS%20topical&st=cse

[comfortzone]

I was checked for Myasthenia Gravis, but the test was inconclusive, in the zone between you don't have it and you do. So, the doc said I didn't. If I do nothing else, I can walk/exercise and do normal things like anyone else....one day a week. If I try to do more, I'm weakened and incredibly sore for days. A half a mile walk has never hurt my muscles this much in my life! I can't seem to make any gains at all, or achieve any conditioning. It is very frustrating.

I am so sorry you are going through this! Yes it is horribly frustrating and I do pray you can find answers and some helps for this...

Your story about mobility, painful afterwards.... losing your conditioning fast -- all of that I relate to 100% What the heck IS THIS ABOUT 'they clamored' .... Seriously .... !!! I worked today on my feet for near 5 hours. Almost a record. I do NOT sit down even though I need to - because it is so near impossible to get back up and out of the chair should I take a ten minute break. I then am so self-conscious if I take a break -- because I walk with these little stiff steps after I get to a stand again.... while trying to conceal how badly this upsets me and fake my way to a healthy 20 year old person's gait. So I just quit taking breaks... at first I HAD to every hour, then every two hours -- Now I work the four without a break.

When I drive home....and then try to get out of the car???? It's even worse than at the restaurant. It's a Parkinson's style gait -- and so miserable. Sure I can take pain pills and then lie down for an hour or so - and then I'll recover -- from pain and stiffness and sometimes lowish blood pressures...but my gosh this is NOT normal - yet no definitive answer arises from some of the brightest doctors I've had the pleasure to meet.

I guess it could be the Hypermobility Syndrome maybe ... but I question that. Do you have joint hypermobility too? I question so many things as I know you do too. In order for me to keep working at losing weight I have to walk - and as you - it beats me up pretty bad. So much so that my primary told me that some people are just not designed to do a lot physically. I hear her - but I know I must walk or if I don't I'll only deteriorate more. So I try to do this. Though lately I feel just too darn tired....that's probably from some med changes. And it feels like sharks are gnawing on my feet from the SFN.

Do the doctors know that your muscles are actually atrophy-ing and getting smaller? That seems so remarkable like they MUST find a suitable cause when it's that severe to cause loss of muscle mass. Have you revisited the lab test for Myasthenia Gravis lately to see if you are now more definitively in the yes or no category?

Blessings your way!

[green]

I sympathize with you. It would be an unpleasant and frightening situation to have your muscles atrophy. Good luck finding a solution!

One possibile cause of weak and atrophied legs: autonomic dysfunction makes it hard to initiate activity, so you use your legs less and they get weaker, this feedsback into making it harder to initiate activity, thus a negative feedback loop is born that leads to progressive deconditioning of the legs. But you can reverse this by using stationary bicycles and elliptical machines.

Another possibility is neuromuscular disorders. Washington University has an interesting website with information about neuromuscular disorders if you are interested. There is a section where it lists disorders and discusses the different kinds of muscle weakness they cause. It even has some pictures of people with atrophied muscles. Try: http://neuromuscular.wustl.edu/maltbrain.html

Speaking of weakness in the legs.... It's worst for me when I squat. I even have trouble getting up off the toliet sometimes. HOWEVER, I've been doing high volume, low intensity leg presses lately - 30 % of my maximum, 4 sets per session, each set to failure (aprox. 40 reps per set) - since I started doing this I've been having less trouble squating and getting up.

[firewatcher]

Reen- things are actually better since I started my "Eastern approach." The herbal medication is cutting down on the pain after my workouts.

Nowwhat!- I have not revisited the MG labs and yes, I'm hypermobile. My Tai Chi instructor told me today that "almost nobody" has the hip flexion that I am showing and we discovered that my stances are too "open" and that was causing the knee pain. The docs don't care that my legs are getting smaller, its "in my head" or me "obsessing." My PT knows and thinks that I need to shift down a gear and go slower so that my brain doesn't shut the muscles down as quickly. I talked to her after my Tai Chi class and she thinks that upright exercise is just too much.

Green- It is unpleasant. Squats are the worst for me too. Apparently the Chinese call the thighs the "second heart" and the TC instructor gave me some conditioning exercises to do.

This isn't a new problem for me (well, since my POTS crash in 2007,) I just noticed that several other people mentioned it and wondered if it was "common" with us. I know that hormone issues can cause muscle wasting and I've got plenty of those!

[issie]

things are actually better since I started my "Eastern approach." The herbal medication is cutting down on the pain after my workouts.

What type of supplements are you using? For pain and/or POTS?

[comfortzone]

Speaking of weakness in the legs.... It's worst for me when I squat. I even have trouble getting up off the toliet sometimes. HOWEVER, I've been doing high volume, low intensity leg presses lately - 30 % of my maximum, 4 sets per session, each set to failure (aprox. 40 reps per set) - since I started doing this I've been having less trouble squating and getting up.

I appreciated your post. Squatting, stooping and crouching are too for me the worst. PT knows that if I were to fall I could not get up off the ground. They taught me 'how' but it remains I would absolutely need furniture or something to assisst me in getting up. I've gotten stuck on toilet seats in public places....once nearly tore off a sink faucet using it for leverage to pull me up....thank goodness it didn't pull loose -- that would have been quite a scene to say the least lol... I've had hip flexor issues for five years now. I believe they think perhaps some permanent damage was done to the internal and external hip rotaters during a surgery.... But after the right knee surgery - when I couldn't get that leg up a curb for at least 7 mos....they now believe I had a post-op lumbosacral radicular plexus neuropathy. But how much of what I have now as a residual - is unknown and a frustration. When I tried to do functional PT - some of it practicing sit to stands on progressively lower seated surfaces - I had big issues with hip flexor and or thigh pain....that put me back on a walker for a couple of times a day for a couple of days.

I called Physical Medicine and Rehab at Mayo yesterday and am going to give physical therapy another try their way. I might as well - at first I balked because I've been working at this issue for so so long - what could they possibly do different....But in the end I changed my mind and think I'll give it a shot. I want those thigh muscles stronger - or whatever hip girdle muscles can get stronger to do just that ... I just have my sincere doubts I guess that they'd have a hook that works somehow better than what I've been trying.

[firewatcher]

things are actually better since I started my "Eastern approach." The herbal medication is cutting down on the pain after my workouts.

What type of supplements are you using? For pain and/or POTS?

I know this answer will frustrate you, but what works for me may not be what you need. I have weekly acupressure treatments (the insertion of a needle would fire up the sympathetic NS) and specifically tailored formulas of Traditional Chinese Herbs. I know that with my formula, two of the three ingredients are licorice and ginger, but I couldn't tell you the amounts. I know it isn't the placebo effect since my formula raises my BP to a point where I have to monitor it. My OM doc is treating me for "Kidney Deficiency" but it isn't anything like Western concepts of kidney problems. He is also treating me for "Blood Deficiency," which actually IS very similar to the Western concept of hypovolemia. The Oriental Medicine approach is very integrated and explains some of the stranger symptoms of POTS very neatly, from an Eastern point of view. I have not gotten far enough into treatment to tell you with certainty that it is a good thing, but so far it is for me: I'm down to .25mg of Klonopin a day instead of .75+mg and my headaches and fatigue are better. The herbs aren't supplements and aren't being treated that way; they are medicines and are very specifically prepared. If you check into this route, screen your practioner very carefully, they need to be licensed and experienced...you can become very sick, very fast with this stuff----just like with Western Medicine.

[jem15]

I experience muscle weakness too. I've noticed it more the past 2 summers in the heat. But I also have the problem of never seeming to gain endurance or strength from exercising. I've been consistently using the recumbent bike for almost a year and half now and dont feel any improvement. I also have leg weights and would walk briefly with them and do leg strengthening exercises, but feel weaker now then I did 2 years ago. Very frustrating!! I also have always had since a kid, before the POTS, leg pain and foot pain if I stand or walk for a short amount of time. I used to hold out longer as a child, maybe 30-45min before a lot of pain, now it's like 10-15min, and that's after all this exercise, i don't get it. I feel your pain and frustration. I lately am wondering if it has anything to do with circulation, at least the pain, I"ve never tried compression stuff due to my heat intolerance, thought I wouldnet tolerate it. but i'm lookin into trying to find something now.

[comfortzone]

Not long ago I spoke with a woman who had truly miraculous functional gains through Tai Chi. She talked for near half an hour about how doctors at big medical centers wanted to do all these invasive things for her becoming like a big puddle of pain and weakness with no known 'certain' medical cause.....her mother was frantic - University of Michigan wanted her to do these odd things. Well she ignored everyone's advice and took up Tai Chi --- and every single symptom resolved. This woman I do not think of as 'off' or a quack or any such thing. She's a wonderful lady. Suddenly two years ago these symptoms started to come back - and she learned it was caffeine that was the evil this time around....got rid of it and a couple other diet changes and she resumed her normal good health again. Now she has a significant other with some chronic health issues and she has signed him up for Tai Chi..... I'm happy to read here again how it helps people and down the road here in a bit -- I would like to maybe give this a try if I'm not too limited by my physical issues. I'm convinced though I'm a skeptic and a western medicine health professional by career in the past - that there is something here to powerful to ignore. My brother and sister are really into this kind of thing too. At their suggestion I once tried acupuncture - only to find out I got the only 'true' quack in 3 counties....just my dumb luck I guess - I never went back - but do have a very funny story to tell....wasn't so funny at the time - but still a quack is a quack and this was pretty bizarre for sure!

[houswoea]

yes, the dysautonomia doctor at mayo saw how weak my legs were and then just assumed I had pots due to deconditioning. I was a very competitive dancer for 7 years, and a non-competitive dancer for the other 10. There's no way they just stopped being strong... must be a connection.

But are we saying PT does not help or it just hasn't helped enough? Is it worth it, I guess is what I'm asking.

[firewatcher]

yes, the dysautonomia doctor at mayo saw how weak my legs were and then just assumed I had pots due to deconditioning. I was a very competitive dancer for 7 years, and a non-competitive dancer for the other 10. There's no way they just stopped being strong... must be a connection.

But are we saying PT does not help or it just hasn't helped enough? Is it worth it, I guess is what I'm asking.

PT has not helped me with POTS. My legs are just as weak as they were two years ago. I agree that there is probably a connection, at least with flares. I used to have very strong legs before my big POTS crash, and I know that I've had POTS since I was a young child (dizziness, tachycardia and exercise intolerance.) I am trying my hardest to get back to where I was before my crash, but I just can't seem to get there.

[basktbal22]

Firewatcher- I had the same experience with leg strength. I lost my leg strength suddenly when the POTS symptoms occurred (and subsequent diagnosis later). For some reason, about 2 years after the onset of my symptoms, I started to regain my leg strength. I kept up the same exercises during this 2 year time frame, and just started getting stronger all of the sudden. My advice is to keep up your exercises- because you never know, you just might start gaining strenght at some point in time. And if you give up your exercises, this gain in strenght is not likely to occur (ie you are not working out, so your body will not produce muscle).

I highly suggest calf exercises with weights. I also suggest other weight exercises- such as squats, lunges, etc. On top of this, I found that working out with a recumbent bike was highly effective. I have not yet tried a rowing machine, so can't comment on that. I truly believe that the rebuilding of my muscles has lowered my heart rate significantly, and lowered the severity of my POTS symptoms (aside from flushing, as stated in my flushing post). Also, diet is key if you are rebuilding muscles- so make sure you get enough protein and carbs. Eating healthy seems to help POTS in general, but don't surpass the carbs, as is common with 'diets'!

Anyways, you probably already knew effective 'POTS' workouts, but I just wanted to give some input. I think the biggest help for me has been the recumbent bike, lifting, and daily 30 minute walks. And if you manage to sweat alot during a workout, adjust your salt intake accordingly (ie add more).

[bkweavers]

My 14 yr. old daughter has leg weakness as well. As her other symptoms have improved, that has also. She started out in therapy and at home lifting 2 lb weights and worked her way up. Her therapist would change the exercises from time to time.

I almost hate to mention this because I know you're a "pro" when it comes to autonomic disorders but have you ever tried Mestinon? I've read that it is suppossed to help leg weakness and my daughter was on it for a year or so.

Prayers to you and all I can say is to keep working out when you can and hang in there.

Brenda