Legs Keep Giving Way

[Tanzanite]

I've had the really heavy legs thing since th ePOTS became bad, I believe that's because of blood pooling? For about 6mths mostly at night or in the morning when I've been in bed for awhile then get up, I get the heavy thing like my legs are made of wood and an achy type feeling thats hard to describe but my legs feel also feel weak and my legs keep giving way.

Just now, I got out of bed after being sat in it for about an hour filling out disability forms and I can't stand up properly, my legs constantly want to keep giving way. Does anyone else get this?

[hannahsmom03]

Hi,

I also have this feeling everyday . It is difficult just doing simple things like going grocery shopping and standing for long periods of time. Driving concerns me because my legs feel like weights and sometimes just go "numb" I wake up this way and go to bed this way. It is very dissapointing because I have always been so active (walking , pilates) but now I find it difficult to do any of those. What makes it harder is not keeping up with my young daughter they way I used to . I totally understand. I hope your day gets better Take care

Erica

[Maxine]

I have had the heavy legs for at least four years now. I remember this starting the summer I had a bathroom put in my basement. The two guys that were supposed to do it were not qualified, and everything was a horrible mess. My brothers helped fix it-----and they also finished the job. When I would go to the Home Depot---Lowe's ect with them to pay for any materials they would get I was shocked at how quickly legs would get heavy.

They are numb, heavy, feel like lead, and weak all at the same time. I'm not sure if this is related to my POTS, spine issues, or the recent lesons found in my brain. Perhaps the lesions were there for a while. I'm trying to get into a neurologist who also has a lot of experience with ANS dysfunction-----------------I'm awaiting a refferal. i'm kind of angry because my appointment was all set, and a week before I was scheduled to see him I get a call from their office saying I need a referral.

You should probably get a neurological work up by a neurologist who will take your symptoms seriously, and hopefully has experience with ANS dysfunction.

Maxine :0)

[lloppyllama]

I have been getting this alot lately too, i think for me its worse right now because the weather is alot warmer than it was before. It kinda scary when i am at school walking on the stairs (cause my doc says i cant use the elevator) But yea i just school is almost out now, so it should be not as scary soon.

Hope your legs start working better for you soon!!

Mary

[yogini]

Hi. Have you tried compression stockings or midodrine?

[MNsue]

You may want to have some muscle testing done by a neurologist to make sure you have not developed a neuropathy.

I found that the physical therapist I work with has been very helpful in documenting the weakness in my legs and arms. The exercises were helpful, but the IVig really made the difference. I am normal in my legs for the first time in over 1 and 1/2 years.

IVIG is not for everyone and it has some pretty tough side effects, but it is working for me.

Rhonda

[Tanzanite]

You may want to have some muscle testing done by a neurologist to make sure you have not developed a neuropathy.

I found that the physical therapist I work with has been very helpful in documenting the weakness in my legs and arms. The exercises were helpful, but the IVig really made the difference. I am normal in my legs for the first time in over 1 and 1/2 years.

IVIG is not for everyone and it has some pretty tough side effects, but it is working for me.

Rhonda

I know I do have some problems with cold hands and feet etc, the specialist (endo) said I had autonomic neuropathy so I'm guessing it could be that.

rqt9191: I haven't tried compression stockings or midodrine, no one wants to know in the UK and dont have a clue. I was lucky to get Florinef (though I actually put myself on it, then they said they'd continue prescribing it for me)

I tend to not see a Dr unless it's almost an emergency as all I get is 'it's all in your head'

[Sunfish]

just to clarify a bit....autonomic neuropathy does not in & of itself cause any weakness. other peripheral neuropathies can, and someone can certainly have something more than "just" autonomic neuropathy (i have some additional peripheral autonomic neuropathy other than autonomic) but if "only" autonomic neuropahty is present it won't cause weakness nor will it show up on any sort of muscle testing. there is testing where it WILL show up (QSART, sweat testing, etc), but that wouldn't necessarily be indicated if weakness is the concern.

deconditioning can play a HUGE role in leg heaviness/ weakness as well. depending in the situation it can't always be helped, but it is definitely something to keep in mind. for me though i can tell a difference between deconditioning weakness (.i.e. after weeks in bed while septic) & heaviness from blood pooling...it feels entirely different to me.

and yep, compression hose helped with the blood pooling heaviness issue for me in the past, at least to a degree. they are something that can be obtained on your own (though insurance won't consider paying without a doctor's prescription.)

melissa

[flop]

Hi Tanzanite,

I'm in the UK and have been put on both Midodrine (not licenced in the UK but obtained on a named-patient basis from Germany via the hospital pharmacy) and compression stockings (provided on the NHS - you're entitled to 2 pairs every 6 months).

If you'd like to PM me and say where abouts in the UK you are I could share the details of my specialist if you like?

Flop