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?

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josiegirl2 | @josiegirl2 | Jul 28 10:56am

My experiences with doctors' tests and rx's are just band aides. Piriformis is so not good along with all the other joys of neuropathy and I don't do doctors and deal with it. I don't think they know where the piriformis. so disappointing when no help. Good luck....................

REPLY
1 reply
thighirritationno1 | @thighirritationno1 | Jul 28 12:43pm
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

Thanks
I totally understand where you are coming from!!
Same stuff as I have..
Continuous aching though not as painful ..
Gabapentin for me too but I resisted getting started in it for over a year..
I can sleep better at times and that helps hugely..
Also using aspercreme with lidocaine..almost nightly..

Very bright neighbor has shared a lot of ideas with me over the past year..Hes been an incredible
help because hes got a ton of physical issues and has done myriads of therapies to mitigate the pain..
A terrific fellow..

He has informed me that rapid
changes in barometric pressure
(up or down) can really initiate
great neuropathic pain..
I unfortunately have been confirming these bouts of pain
the past few months..

You might have experienced one of these rapid changes..
These changes can be a real bummer to people with neuropathy..
Kind of like feels like your body is
getting its butt kicked..
Seriously

Doctors and chiropractors have little time or knowledge to point
these things out.

One thing I have not learned how to do is learn to calm myself down regularly and another thing
eliminate things that will initiate
neuropathic pain..

Its so tricky for sure
Finding the origins of the cause
of neuropathic pain in the body
is currently out of medical sciences abilities..
Thats a huge problem also ..
Thanks for your contribution

REPLY
1 reply
thighirritationno1 | @thighirritationno1 | Jul 28 12:45pm
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.

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Meds that you are taking??

REPLY
1 reply
heisenberg34 | @heisenberg34 | Jul 28 1:11pm
In reply to @thighirritationno1 "Meds that you are taking??" + (show)
@thighirritationno1

Meds that you are taking??

Jump to this post

300 mg gabapentin 3x daily; diclofenac K; occasional Tramadol; just cut out Diazepam. Various otc vitamins. Tamsulosin for prostate.

REPLY
thighirritationno1 | @thighirritationno1 | Jul 28 4:05pm

Thanks very much for your reply..
It helps a great deal
Cheers

REPLY
bayhorse | @bayhorse | Jul 29 12:17pm
In reply to @heisenberg34 "I've had doctors do the typical "piriformis stretch" to rule it out. Seems somewhat incredible that..." + (show)
@heisenberg34

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?

Jump to this post

What is the piriformis stretch?

REPLY
1 reply
coachrandy | @coachrandy | Jul 29 5:17pm
In reply to @josiegirl2 "My experiences with doctors' tests and rx's are just band aides. Piriformis is so not good..." + (show)
@josiegirl2

My experiences with doctors' tests and rx's are just band aides. Piriformis is so not good along with all the other joys of neuropathy and I don't do doctors and deal with it. I don't think they know where the piriformis. so disappointing when no help. Good luck....................

Jump to this post

Thank you and best wishes,

REPLY
coachrandy | @coachrandy | Jul 29 5:26pm
In reply to @thighirritationno1 "Thanks I totally understand where you are coming from!! Same stuff as I have.. Continuous aching..." + (show)
@thighirritationno1

Thanks
I totally understand where you are coming from!!
Same stuff as I have..
Continuous aching though not as painful ..
Gabapentin for me too but I resisted getting started in it for over a year..
I can sleep better at times and that helps hugely..
Also using aspercreme with lidocaine..almost nightly..

Very bright neighbor has shared a lot of ideas with me over the past year..Hes been an incredible
help because hes got a ton of physical issues and has done myriads of therapies to mitigate the pain..
A terrific fellow..

He has informed me that rapid
changes in barometric pressure
(up or down) can really initiate
great neuropathic pain..
I unfortunately have been confirming these bouts of pain
the past few months..

You might have experienced one of these rapid changes..
These changes can be a real bummer to people with neuropathy..
Kind of like feels like your body is
getting its butt kicked..
Seriously

Doctors and chiropractors have little time or knowledge to point
these things out.

One thing I have not learned how to do is learn to calm myself down regularly and another thing
eliminate things that will initiate
neuropathic pain..

Its so tricky for sure
Finding the origins of the cause
of neuropathic pain in the body
is currently out of medical sciences abilities..
Thats a huge problem also ..
Thanks for your contribution

Jump to this post

Thank you for your response. I agree that barometric pressure change can affect your pain level. I have been disabled with chronic pain for over 29 years now due to spinal problems and surgeries. I hurt much more with weather changes. Rain and drastic changes in temperatures have drastic effects on my pain level. I was a high school coach and I like what you said about calming yourself down; I always talked to players before shooting free throws about calming down and relaxing before shooting. It is like hitting a golf ball or hitting a baseball, tension is has a negative effect on you.
I lay down when needed and use ice packs or heating pads when needed. A good short walk sometimes helps; being outside is a positive for me.
I went to the neurologist today and we are going to do an MRI (my 31st) on my back to see if that could be causing some of my leg problems. She is very good and reminds me we have a long way to go in learning about neuropathy.
Best wishes to you.

REPLY
thighirritationno1 | @thighirritationno1 | Jul 29 8:55pm

Good luck coach!!
Better futures ahead for you!

REPLY
heisenberg34 | @heisenberg34 | Jul 30 9:28am
In reply to @bayhorse "What is the piriformis stretch?" + (show)
@bayhorse

What is the piriformis stretch?

Jump to this post

While seated in a chair, you are asked to cross your right leg over your left knee. Then, grasping the right ankle, pull the right lag toward your body, seeing if it illicits any pain in your pelvic region(where the piriformis muscle is located. Then repeat with left leg.

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