Please can someone help me --

[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 --

[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.

[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.:confused:

[ConsiderThis]

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]

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.:confused:

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.

[dorry]

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 :mad:

[dorry]

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]

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 :mad:
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]

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))))))))))))))

[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.

[ConsiderThis]

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.

Boy, that is the one thing I am so sure of after the last two years: "There is a very fine line between beneficial exercise and causing damage, so you have to listen carefully to your body.

Moose posted a dynamite article along those lines. I used to go back and read it, but then when I was banned I couldn't even see the forums for awhile, then I got a new computer, but... etc.

For me, I make myself rest for weeks. Weeks. not hours.

I'm in bed most of the time. And when I start getting up, if I go soooo slow, just a little walking in my garden... then I get better day by day.

But if something stressful happens, like you getting the bill you didn't expect, then I can suddenly be just as bad as I was before I made myself rest for a week.

I got a ... massage chair, it massages. It is very helpful. More than I would have expected. So that was helping me learn to relax my muscles. But then I got this horrid leak in the bathroom next to the room with the massage chair and I could not get they guy whom I'd just paid to fix it to come back, and every time I used the chair the sound of the dripping made my muscles more tight than the chair was able to handle. and then there was major damp all the way into the kitchen from it... and mold.

so... it's never easy.

And now I have the leak fixed, but it was there so long that going in to use the massage chair makes me feel very anxious, as if the leak were still there.

Irritating.

Disability is NO fun. I sure agree on that.

[dorry]

I had back surgery back in the 80's for a ruptured disc and unstable spine. They fused it, etc. When I used to use a back brace often, I'd have to take it off by 2 weeks or my back would start weakening. Rest is great, but I only rest when there's no more get up and go left. What ticks me off is it takes very little to push me over that line.

water leaks are scary! In this old house we've done some remodeling and I'll have nightmares if I allow myself to think about what we found in the walls. Icky, old looking wood and framing like a mile apart! I keep thinking the whole house is going to fall down.

stress with any disease is frosting on the cake that we don't need.

[ConsiderThis]

I had back surgery back in the 80's for a ruptured disc and unstable spine. They fused it, etc. When I used to use a back brace often, I'd have to take it off by 2 weeks or my back would start weakening. Rest is great, but I only rest when there's no more get up and go left. What ticks me off is it takes very little to push me over that line.

water leaks are scary! In this old house we've done some remodeling and I'll have nightmares if I allow myself to think about what we found in the walls. Icky, old looking wood and framing like a mile apart! I keep thinking the whole house is going to fall down.

stress with any disease is frosting on the cake that we don't need.

Just for the fun of it try resting whole days, and then see if you feel better the day after the extra rest.

I wish Moose would post the rest article again.

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

[dorry]

Just for the fun of it try resting whole days, and then see if you feel better the day after the extra rest.

I wish Moose would post the rest article again.

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

Lately I will veg most of the day stretched out on the bed. Maybe 2 days tops. I feel better with the rest, but then activity wipes the energy again. So I sit alot or we have a reclining couch so I keep my feet up.

The most good days I can get in a row are 2.

[ConsiderThis]

Hi Dorry,
I think that to get three good days you'd have to rest three full days or more, and not deplete all the rest before you rested again.

Would you do me a HUGE favor? Please? and post asking someone to please post the information that Moose posted on BT about the red balls and rest, or something like that...

It's going to look too weird if I post another, "Please will someone help me"

but you could.... :D

[dorry]

Hi Dorry,
I think that to get three good days you'd have to rest three full days or more, and not deplete all the rest before you rested again.

Would you do me a HUGE favor? Please? and post asking someone to please post the information that Moose posted on BT about the red balls and rest, or something like that...

It's going to look too weird if I post another, "Please will someone help me"

but you could.... :D


what?!! I'll sound liek a bigger idjiot asking about mooses red balls post!! haha. Someone will ask me a question and I'll be like, "duh" :confused:

YOU ask it! There's no limit on the amount of questions you can ask. Besides, ppl are bitching that nobody is talking on the health forums ;)

lol get US started and we yak it up for the rest of them.

[ConsiderThis]

what?!! I'll sound liek a bigger idjiot asking about mooses red balls post!! haha. Someone will ask me a question and I'll be like, "duh" :confused:

YOU ask it! There's no limit on the amount of questions you can ask. Besides, ppl are bitching that nobody is talking on the health forums ;)

lol get US started and we yak it up for the rest of them.
Sure, but you're in a thread I started...

PLEASE ask... please please please...

I'll jump right in and say I know what you are talking about...

PLEASE?????

[Curious]

i'll ask if dorry won't. i'm not shy.:D

[ConsiderThis]

i'll ask if dorry won't. i'm not shy.:D
Oh, how funny. I completely forgot that a lot of people can see what I wrote. I was thinking about dorry and thinking of her, only her reading it. shaking my head, here.

Do you have a smilie that's shaking it's head?

I just gave up and posted it. but it is a very lame question.

[Curious]

i thought your title should have been:

moose and her red balls?

:p

[dorry]

i thought your title should have been:

moose and her red balls?

:p

YES it should have. Go back and edit that topic!

[ConsiderThis]

i thought your title should have been:

moose and her red balls?

:p

I am genuinely laughing so hard, and so out loud that I am afraid my neighbors are going to turn off their tellys to see whether they really heard a loud cackling.

[ConsiderThis]

YES it should have. Go back and edit that topic!
You guys are incorrigible... corrigated boxes... no...

but you know what I mean.

(((((((((you guys))))))))))))))))))))

[ConsiderThis]

i thought your title should have been:

moose and her red balls?

:p
Well, the beauty of that is that it would certainly be a perfect topic of the Rare Disorders forum...

:D

[Curious]

i double dare you. :p

[ConsiderThis]

i double dare you. :p

well... let's see... if you posted it... it would certainly appear at first blush as if it were an entirely Different topic....

[dorry]

Well, the beauty of that is that it would certainly be a perfect topic of the Rare Disorders forum...

:D


http://img246.imageshack.us/img246/7923/lolux7.gif

stop it dammit you're killing me!!!!

[dorry]

You guys are incorrigible... corrigated boxes... no...

but you know what I mean.

(((((((((you guys))))))))))))))))))))

incorrigible is my middle name! my husband always shakes his head and tells me so :eek:

[snoozie]

You guys crack me up :D ...Sue

[ConsiderThis]

You guys crack me up :D ...Sue

:D Happy to hear it. Laughter is just a wonderful thing!!!!!!!!!!

[Jaye]

I have had upwards of five doctors at a time, none of them able to find a reason for that much pain. For me the answer was not to stop going to doctors but to keep working with the ones I had, firing the ones I couldn't work with, and finally finding the answer--myself--on the internet. I didn't diagnose myself, I just figured out what kind of doctor to see and what questions to ask. Now, please don't take anything that happened to me as applying to you, CT, but here's advice which is only my way of doing things.

How old you are doesn't matter. It can be Parkinson's (PD) or Osteoarthritis or anything degenerative, and it can still happen to younger people. Some docs don't know this.

What you already have doesn't matter. I have PD, so my neurologist could only see arthritis and my family doctor could only see Parkinson's, and no one was treating the buckling leg, the pain that doubled me over and got better with absolute rest, the shattered mind state that came with repeated inability to do as the docs ordered me (I also have a major clinical depression, physically caused, that is treated along with my PD).

A lot of people give up and become wheelchair-bound, etc., when they don't need to. Docs worry about this. They urge you to keep moving. I know they're right to do so, but the body doesn't lie.

See an article called "Anterior Hip Pain" at http://www.aafp.org/afp/991015ap/1687.html. Many, many amazing revelations for me were found there.

See the website of the Arthritis Foundation at www.arthritis.org. Exhaustively thorough, it covers all the bases. Avoid diagnosing yourself from it, or you'll be laid up for years! LOL

Ask yourself questions. Puzzle about it, looking for an overall picture. Post about it but remember we're not docs here.

Find a good Movement Disorder Specialist if brain-to-muscle signalling problems seem to be at work. I think there's one in Albuquerque at UNM Hospital (or whatever they're calling it these days). The MDS certification goes on top of a specialty in neurology.

And about Stress:
Reacting strongly to stress can itself be a symptom, as can your sleep patterns.
Personally, I have a deep religious faith that doesn't require me to leave my brains at the door and is quite accepting of other faiths and their practices (will it suprise you that it's a Christian way that's right for me and fits this description?). This is what keeps me afloat.
Massage and/or Reiki help. You can learn just the first level of Reiki to do on yourself for not too much money.
I"m sure you can add to this list.

For everything there is a season, a time to laugh, a time to cry,
a time to rest, a time to get up and put that 'puter to work!

Jaye

P.S. Much better today, thank you.

[ConsiderThis]

(((((((Jaye)))))))

What a powerful post!!!!!

Gosh, it's really touched me emotionally.

I so understand when you write about doctors saying to exercise only ...

Well, the pain.

And then the fact is that you get better with absolute rest.

Absolute rest!!!!!!!

We live in a society where "No Pain, No Gain," is the slogan... but pain is not good. Maybe for someone.

but not for ANYone with nerve disorders.

I have gotten so much worse so many times by simply pushing myself to ignore the pain.

(this is since I've had tetanus)

And what I've begun to wonder is whether, if I hadn't pushed myself to shut out the pain and do things despite it for so many years, if my health would be better now... my nerve health.

Whew!!!!!!

That's all I can respond to right now. (because I'm in overwhelm)

((((((((Jaye))))))))

Thank you!!!!!!

[Jaye]

Anyone: what did you think of the anterior hip pain article? Too much medicalese, boring, what?

You know I'm not going to be happy with "too much medicalese." Maybe I can help some more.

Jaye

[dorry]

hi jaye. I just read most of it. I like articles like that where they break it down into tables and pictures. As far as the medical information, mine doesn't bother me enough to look into it, but if it did, that article would be one that I would review.

[Jaye]

Thanks for your reply, dorry. I like the charts and tables, too.

Jaye