1. < Neuropathy

Cramps in thighs and pain up to my waist

Posted by coachrandy @coachrandy, Jul 26 6:32pm

My idiopathic peripheral neuropathy has progressed where I am having cramps in my thighs with pain up my legs to my waist. It is really making it hard to walk and to stand up for long periods of time. I had a topical compound added to my medicine regiment that only helps for a short period of time. Does anybody else have cramps in their thighs and/or pain up to their waist?

Interested in more discussions like this? Go to the Neuropathy Support Group.

Leonard | @jakedduck1 | Jul 26 11:03pm

@coachrandy
I’ve had neuropathy for nearly 40 years probably caused by seizure medications. Started in the bottom of my feet and after a number of years progressed up to my waist with varying degrees of numbness. i've never had any of the cramps like you describe. Doctors believe my ED, bladder and bowel problems are a result of the neuropathy. The neuropathy pain is gone and replaced with numbness, leg weakness and increasing balance issues. Although part of my balance troubles are from seizures and seizure meds.
I hope you don't have any more neuropathy complications.
Take care,
Jake

REPLY
2 replies
allegheny | @allegheny | Jul 27 8:26am

Hi! Yes I had excruciating pain in my upper thigh so bad one night that I passed out. My husband called 911 (thinking I had a stroke since I had gotten out of bed and was on the way to the bathroom when I fainted. Hospital said it was a fainting spell from pain ( which I knew because I do pass out with pain) After that first episode that terrible pain would occur every 4-5 months. My doctor said that the pain was due to neuropothy, which I had for 4 yrs at the time and resisted taking any drugs, he told me to start gabapentin, which I finally did. 100 mg in AM and 200mg in PM. I also take magnesium at night and rub magnesium oil on my thighs in PM. It has been 4 months since that terrible pain in inner thighs. Hoping that the gabapentin is doing its job and I do not have to increase dosage. Best wishes to you, I have been dealing with idipathic neuropothy for 8 yrs now, I feel neurologists are not interested in really finding the root cause of this awful disease. I have had an MRI of brain and total spine, neurosurgeon and neurologist said nothing there to cause PN. OH WELL! Again BEST WISHES TO YOU.......

REPLY
3 replies
heisenberg34 | @heisenberg34 | Jul 27 9:26am
In reply to @allegheny "Hi! Yes I had excruciating pain in my upper thigh so bad one night that I..." + (show)
@allegheny

Hi! Yes I had excruciating pain in my upper thigh so bad one night that I passed out. My husband called 911 (thinking I had a stroke since I had gotten out of bed and was on the way to the bathroom when I fainted. Hospital said it was a fainting spell from pain ( which I knew because I do pass out with pain) After that first episode that terrible pain would occur every 4-5 months. My doctor said that the pain was due to neuropothy, which I had for 4 yrs at the time and resisted taking any drugs, he told me to start gabapentin, which I finally did. 100 mg in AM and 200mg in PM. I also take magnesium at night and rub magnesium oil on my thighs in PM. It has been 4 months since that terrible pain in inner thighs. Hoping that the gabapentin is doing its job and I do not have to increase dosage. Best wishes to you, I have been dealing with idipathic neuropothy for 8 yrs now, I feel neurologists are not interested in really finding the root cause of this awful disease. I have had an MRI of brain and total spine, neurosurgeon and neurologist said nothing there to cause PN. OH WELL! Again BEST WISHES TO YOU.......

Jump to this post

Geez, Louse! I have often felt like I was on the verge of fainting but have never actually fainted. My pain gets so bad that my hands shake, it is difficult to stand or sit. I tend to suddenly jek or twitch when in bed. My wife has commented on this many times. I wonder how bad one hs to get before your docs take you seriously and dive deeper into the root cause and possible treatment of your pain.

REPLY
2 replies
coachrandy | @coachrandy | Jul 27 10:48am
In reply to @jakedduck1 "@coachrandy I’ve had neuropathy for nearly 40 years probably caused by seizure medications. Started in the..." + (show)
@jakedduck1

@coachrandy
I’ve had neuropathy for nearly 40 years probably caused by seizure medications. Started in the bottom of my feet and after a number of years progressed up to my waist with varying degrees of numbness. i've never had any of the cramps like you describe. Doctors believe my ED, bladder and bowel problems are a result of the neuropathy. The neuropathy pain is gone and replaced with numbness, leg weakness and increasing balance issues. Although part of my balance troubles are from seizures and seizure meds.
I hope you don't have any more neuropathy complications.
Take care,
Jake

Jump to this post

Thank you, I hope the best for you.

REPLY
coachrandy | @coachrandy | Jul 27 10:53am
In reply to @heisenberg34 "Geez, Louse! I have often felt like I was on the verge of fainting but have..." + (show)
@heisenberg34

Geez, Louse! I have often felt like I was on the verge of fainting but have never actually fainted. My pain gets so bad that my hands shake, it is difficult to stand or sit. I tend to suddenly jek or twitch when in bed. My wife has commented on this many times. I wonder how bad one hs to get before your docs take you seriously and dive deeper into the root cause and possible treatment of your pain.

Jump to this post

Thank you. I hope the gabapentin does not make you tired. I have been on it for 4 years now and I do get tired a few hours after taking it. Mine is idiopathic and it is frustrating to not know why. I have spinal problems; had my first neck surgery at 34 and I am sure that has an effect. It is terrible how the doctors make money on us running us through all these tests to prove they don't know your cause.
I hope things go well for you.

REPLY
heisenberg34 | @heisenberg34 | Jul 27 11:14am

And for you as well. You developed problems at a young age. My pain is the result of a skiing fall eight years ago. The pain was under decent control for about three and a half years. It has been ramping up to new, almost intolerable levels over the past six months. Yes, not knowing how to deal with it is extremely frustrating, especially when you are dealing with so-called "pain docs", aka anesthesiologists for the most part, who can't be bothered to look more deeply into your pain.

REPLY
josiegirl2 | @josiegirl2 | Jul 27 4:19pm

I feel your pain. I have neuropathy/stenosis ++...My experience started in the back then thighs and hips. Then it goes to your calves and feet. Have you experienced your piriformis? Muscle in your butt. Had this for too long and tried all but no results. I choose to live and deal with it. Don't like it but.......

REPLY
1 reply
josiegirl2 | @josiegirl2 | Jul 27 4:28pm
In reply to @jakedduck1 "@coachrandy I’ve had neuropathy for nearly 40 years probably caused by seizure medications. Started in the..." + (show)
@jakedduck1

@coachrandy
I’ve had neuropathy for nearly 40 years probably caused by seizure medications. Started in the bottom of my feet and after a number of years progressed up to my waist with varying degrees of numbness. i've never had any of the cramps like you describe. Doctors believe my ED, bladder and bowel problems are a result of the neuropathy. The neuropathy pain is gone and replaced with numbness, leg weakness and increasing balance issues. Although part of my balance troubles are from seizures and seizure meds.
I hope you don't have any more neuropathy complications.
Take care,
Jake

Jump to this post

Hi and interesting since I did seizure meds for 20 years. Dilantin etc. I now have neuropathy and never connected them. I will research since my seizures were from aspartame. Don't trust pharma...........

REPLY
cantab | @cantab | Jul 28 5:12am
In reply to @allegheny "Hi! Yes I had excruciating pain in my upper thigh so bad one night that I..." + (show)
@allegheny

Hi! Yes I had excruciating pain in my upper thigh so bad one night that I passed out. My husband called 911 (thinking I had a stroke since I had gotten out of bed and was on the way to the bathroom when I fainted. Hospital said it was a fainting spell from pain ( which I knew because I do pass out with pain) After that first episode that terrible pain would occur every 4-5 months. My doctor said that the pain was due to neuropothy, which I had for 4 yrs at the time and resisted taking any drugs, he told me to start gabapentin, which I finally did. 100 mg in AM and 200mg in PM. I also take magnesium at night and rub magnesium oil on my thighs in PM. It has been 4 months since that terrible pain in inner thighs. Hoping that the gabapentin is doing its job and I do not have to increase dosage. Best wishes to you, I have been dealing with idipathic neuropothy for 8 yrs now, I feel neurologists are not interested in really finding the root cause of this awful disease. I have had an MRI of brain and total spine, neurosurgeon and neurologist said nothing there to cause PN. OH WELL! Again BEST WISHES TO YOU.......

Jump to this post

‘They” are all trying to end the disease. It is extremely difficult as attested by all the people on these boards having different experiences and having to try multiple treatments. Can you imagine being the one who comes up with a solution!
Be nice, we’re all in this together.

REPLY
heisenberg34 | @heisenberg34 | Jul 28 7:46am
In reply to @josiegirl2 "I feel your pain. I have neuropathy/stenosis ++...My experience started in the back then thighs and..." + (show)
@josiegirl2

I feel your pain. I have neuropathy/stenosis ++...My experience started in the back then thighs and hips. Then it goes to your calves and feet. Have you experienced your piriformis? Muscle in your butt. Had this for too long and tried all but no results. I choose to live and deal with it. Don't like it but.......

Jump to this post

I've had doctors do the typical "piriformis stretch" to rule it out. Seems somewhat incredible that one, simple move can rule out such a complex injury. Any thoughts?

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.