[ConsiderThis]

I've had peripheral neuropathy in my feet, and one thigh was very painful a lot of the time.

Recently I've had a problem where I get this sharp, intense pain in my ... hip, sort of where my hip is, or the top of my thigh. When it hits it startles me so much I lose track and forget to notice where the pain is, mostly.

When it hits, I tend to fall... so I think of it being in my legs, but I think it's higher up.

Okay, here's the thing -- What can I do to not be thrown down by it? It sort of makes my legs buckle. But I can't tell if it is making my legs buckle, or if happens and then a moment later they buckle.

Do you have any idea if I were able to exercise more, if that would strengthen my muscles and maybe they would stand up to the pain better?

Or do you think the pain is a result of my muscles being out of shape... ???

I would really appreciate any input on this --

hi considerthis. I have PN in my legs too (burning, swelling, blood pooling, nerve damage) and it doesn't take much to knock me off my feet, so I know how scary it can be. When I walk downstairs I tap my heel on the next step down to orientate where my foot is going to land. I hate walking downstairs. I never walk on flat ground without looking at my feet often.

That hip pain could be from your back. I have ungodly backpain sometimes, but usually I just feel pain in my butt and legs. I do get a sharp pain in my butt (hip?) on the outside about 1/2 way down where it joins my legs. Get it behind the knee alot too. More so than my hip.

Can't offer any help other than to sympathize and tell you to be VERY careful when walking. I have LONG legs and my legs are so shot that the most I can muster are baby steps. My ankles are stiff and don't bend right.

I hate it! Takes me forever to get anywhere and the longer I walk the more they slow down. If I overdue do it on any given day I just park myself on the couch and call it a day. It's amazing how long you can hold a full bladder when it's too painful to walk

PS - trying to build up my leg muscles never does squat for me. The muscles just don't bulk up in response.

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I get thigh pain in my left leg real bad at times too. It seems to be on the outside of the thigh and the more I try to walk the tighter it gets and so does the other thigh? Weird. No one can tell me what it is or has even tried too. They just act like I never mentioned it. My left leg falls out from under me when the pain hits too. Wish I had an answer for both of us.

[ConsiderThis]

Originally Posted by dorry

hi considerthis. I have PN in my legs too (burning, swelling, blood pooling, nerve damage) and it doesn't take much to knock me off my feet, so I know how scary it can be. When I walk downstairs I tap my heel on the next step down to orientate where my foot is going to land. I hate walking downstairs. I never walk on flat ground without looking at my feet often.

That hip pain could be from your back. I have ungodly backpain sometimes, but usually I just feel pain in my butt and legs. I do get a sharp pain in my butt (hip?) on the outside about 1/2 way down where it joins my legs. Get it behind the knee alot too. More so than my hip.

Can't offer any help other than to sympathize and tell you to be VERY careful when walking. I have LONG legs and my legs are so shot that the most I can muster are baby steps. My ankles are stiff and don't bend right.

I hate it! Takes me forever to get anywhere and the longer I walk the more they slow down. If I overdue do it on any given day I just park myself on the couch and call it a day. It's amazing how long you can hold a full bladder when it's too painful to walk

PS - trying to build up my leg muscles never does squat for me. The muscles just don't bulk up in response.

Hi Dorry,
Yes, stairs are very scary. Most things here are one story, and the few other buildings I go to mostly have elevators, and I for sure use them.

I fell on stairs when I was still living in the hydrogen sulfide... but I caught the handrail and twisted around, but I didn't tumble down the flight. Whew.

I get upset at how much I wrench my wrists, but in the disabled taxi the other day I met a young woman with horrible scars on her arms from falling in seizures. She has epilepsy. So then I realized how really lucky I am.

The pain is ... inhibiting, to say the least.

Oh (((((((((Dorry))))))))))

I want us to be well!

I just had that major, buckling kind of pain when I was in the kitchen a minute ago, before I came here to see what might have been written.

And, me too with the long legs and little steps.

Do you get better after you've rested? Like in the morning are you better?

If I could rest, or learn to relax better than I do now, I wonder if I could get more good minutes out of each day...

[ConsiderThis]

Originally Posted by slogo

I get thigh pain in my left leg real bad at times too. It seems to be on the outside of the thigh and the more I try to walk the tighter it gets and so does the other thigh? Weird. No one can tell me what it is or has even tried too. They just act like I never mentioned it. My left leg falls out from under me when the pain hits too. Wish I had an answer for both of us.

Oh, I am so glad you wrote. I feel so weird when I think I'm the only one with this because no one seems to know what I'm talking about.

Whew!!!!! Thank you so much for writing!!!!!!

For sure, just absolutely for sure, it is not a good idea to push yourself when you are feeling pain.

Last summer I was doing much better than I am now. BUT, I was at Home Depot and could not get the task finished because the paint person was so slow. I was getting more and more bent by my muscles getting tighter and tigher. I fought it. I fought it.

But that was so stupid. After that I had intense pain by my diaphragm again, and I could barely get out of bed... for nearly three months.

So now I'm very cautious, and if I start to feel bad, I just do not push myself.

(I also now know about those little electric chairs in shops. I enjoy them. Feels like a carnival ride. )

((((((((slogo))))))))))

As an aside, do you take methylcobalamin at all?

It's helped my PN pain a lot. It just hasn't totally gotten rid of all of it.

Do you get better after you've rested? Like in the morning are you better?

When I first get out of bed my legs bend in at the knees to hold me up until they get warmed up. Then the more I go, they straighten out. Usually by the time I hit the bathroom I am upright. When I first get out of a chair same thing.

I never shop anymore because it wipes me out so bad. Just not worth it. I do have good days though and feel pretty good. Usually followed by a few days of hell. I just take them as they come and live with it.

I had a muscle biopsy years ago and they found some mitochondrial problem and said it pointed to muscle disease. Polyneuropathy, severe nerve damage, yatta yatta. Even with all the abnormal tests, they wanted to do more tests. Then I fell and shattered my wrist and got RSD. Throw in a few TIA's and heart/autonomic problems and well .....crap!

My solution was to quit going to doctors, so I haven't a clue, other than it's getting worse instead of better. The shorter and shorter steps are really ticking me off bigtime. We took our boxer to the park the other day off leash and he ran like the wind...must have been doing 35mph. I hobbled back to the pavilion thinking, that poor hyperactive pup, no WONDER he pulls like a tanker on the leash.

I wish I had a cure. I do know the only thing that kills nerve pain (like when you are on FIRE) is to take the hottest bath you can stand. Pain free while in the tub!

disability just sux

BUT, I was at Home Depot and could not get the task finished because the paint person was so slow. I was getting more and more bent by my muscles getting tighter and tigher. I fought it. I fought it.

oh gawd standing in one spot too long is killer, I think worse than walking. Talk about going downhill fast! every muscle tightens up to the point you feel like they are going to rip.

[ConsiderThis]

Originally Posted by dorry

When I first get out of bed my legs bend in at the knees to hold me up until they get warmed up. Then the more I go, they straighten out. Usually by the time I hit the bathroom I am upright. When I first get out of a chair same thing.

I never shop anymore because it wipes me out so bad. Just not worth it. I do have good days though and feel pretty good. Usually followed by a few days of hell. I just take them as they come and live with it.

I had a muscle biopsy years ago and they found some mitochondrial problem and said it pointed to muscle disease. Polyneuropathy, severe nerve damage, yatta yatta. Even with all the abnormal tests, they wanted to do more tests. Then I fell and shattered my wrist and got RSD. Throw in a few TIA's and heart/autonomic problems and well .....crap!

My solution was to quit going to doctors, so I haven't a clue, other than it's getting worse instead of better. The shorter and shorter steps are really ticking me off bigtime. We took our boxer to the park the other day off leash and he ran like the wind...must have been doing 35mph. I hobbled back to the pavilion thinking, that poor hyperactive pup, no WONDER he pulls like a tanker on the leash.

I wish I had a cure. I do know the only thing that kills nerve pain (like when you are on FIRE) is to take the hottest bath you can stand. Pain free while in the tub!

disability just sux

Darn it!!!!

DARN IT!!!!!!!

Okay, so you've got me thinking now. See I have the shorter and shorter steps problem, and it has to do with the tetanus, for me. I know that tetanus is a central nervous system disease, but it doesn't feel that way, it feels like it's a muscle disorder.

When it was really bad I couldn't step over a cord on the floor. It used to take me three steps to cross one, single Saltillo tile. The tiles are a foot square.

But see, in the morning I was always the best, feeling the best, and as the day wore on I would be more and more bent.

So now I try to rest a lot. Only now I need to exercise more, well, I've always needed to, but exercise made me so much worse it wasn't possible.

Do you take much methylcobalamin? It has helped me, but I've been taking rather huge amounts. (I don't think it's too much, though, because when I cut back I start getting nose bleeds again, and feeling depressed.)

[ConsiderThis]

Originally Posted by dorry

oh gawd standing in one spot too long is killer, I think worse than walking. Talk about going downhill fast! every muscle tightens up to the point you feel like they are going to rip.

Yes... sadly, I can see that you know how I feel.

(((((((((((dorry))))))))))))))

There is a very fine line between beneficial exercise and causing damage, so you have to listen carefully to your body.

I have so many overlapping problems it's hard to say from one day to the next why I feel like crap. Crap is crap, so it really doesn't matter though. If you're having a good day, do a little more.

Some days the more I do I feel better, but then it exhausts me out of the blue afterwards, when I didn't feel any overdueing it pain while being more active.

I think muscles have little reserve with some of these diseases. Kind of like low blood sugar. You don't have a clue when it's going to hit you and then wham!

I used to take neurontin and loved it because it stopped the burning. Then I ended up in the ER and had to quit taking it.