Six years of severe pain & misery and doctors have no answers
I'm 72 years old and in these my final years, I've spent 6 years of severe peripheral neuropathy since fracturing my hip. I had hip-pinning.
Prior to the fracture, I had very slight neuropathy. Slight numbness below the knee, occasionally feet would hurt some ... no bad. No darting nerve pain.
After fracturing my hip, the darting nerve pain was off the charts unbearable.
One of the conclusion of my first EMG was that my right leg was worse , and yet it was not worse for one minute of one. day.
After three years, I woke up one morning and my left foot felt like in had a twenty pound ankle weight and the right felt 10 pounds heavier.
Three years late, they're both heavy.
-my left leg is still weak
the nerve pain is still real bad
-to step up stairs normally, I need to pull myself with both hands on the rail
-when the feet got heavy, that's the first time my left leg felt longer
-I must use a cane and I have no balance whatsoever.
-I almost fall several times a day
-I can only walk around fifty yards
-my left thigh sometimes feels like it buckles
The mental and physical torture has me at my wits end.
I'm hoping someone can gives me some clues about what has caused my condition.
Thank you for reading,
JerryMcG
Interested in more discussions like this? Go to the Neuropathy Support Group.
I have a lot of the same symptoms as you,and the pain is awful everyday.
I’ve gone to many neurologists with no relief and I’m going to a new one now.
Hopefully he can help me
Hello Jerry @jerrymcg, I would like to add my welcome to Connect along with @harley22 and others. I'm sorry you both have to deal with the awful pain every day and I'm hoping you both can find some treatment that provides relief. I don't have that pain along with my neuropathy but I do have the numbness and balance problems and it's a daily challenge also. What has helped me is taking each day one at a time and living the best that I can including enjoying things that make me happy.
I think it helps to learn as much as you can about your symptom and what options might be available to provide some relief for your symptoms. One of the better sites I've found is the Foundation for Peripheral Neuropathy.
-- Living Well: https://www.foundationforpn.org/living-well/
Hi Jerry @jerrymcg
I'm 61 and figured out I also have Peripheral Neuropathy (PN). It is a weird disease. My arms and hands are numb. My legs and feet are numb AND they have shooting nerve pain. Never at the same time shooting so far.
The PN gets into my jaw and teeth. It makes me feel like I have an infection to the left of my left nostril.
I also cannot walk far. Sometimes the lower spine nerves will scream and send the voice nerve down my left leg. It is dastardly! Once in a great while I (shhhh...) feel almost good.
I take 2700 mg Gabapentin, smoke marijuana, Cat's Claw (a vine from the Amazon to help arthritis like ailments), and in the eve a bit of whiskey.
I'm sleeping better. As soon as I awaken, feeling awesome, my friend PN says, "Not so fast!".
As John @johnbishop says, "taking each day one at a time and living the best that I can including enjoying things that make me happy." That was worth repeating again!
I'm pushing through the burn and practicing with my bow! I'd better be ready by mid Sept. as my hubby surprised me with new hunting garb which was just under $600.00!! That's a motivator! Get up in that stand with your hunting garb or look at a sad face from hubby (kinda snarly really)!!!
I don't know that cause of my PN. I do research from time to time to check out new ideas on causation and new medications.
So, Jerry, I wish you all the best. You have 10 years on me. Check in from time to time!
Cheers, Jill the Pill
I am so sorry for you. I have never heard anything like it before. I have fibromyalgia and torn rotator, neuralgia on my whole right side but none of my pain compares to yours. I have prayed for you that God will lift your pain. God bless you.
Jerry, I am so sorry for your pain and frustration. You are not alone. If you have not had recent extensive workup of your spine, including MRI/CT, you want to request these additional tests.
Stay safe, as mobile as possible. Thinking of you
Hello, @jerrymcg ~
I am so sorry to read of the dilemma and pain you find yourself in. My experience mirrors some of yours, especially the lack of balance, having to use a cane (or sometimes walker), daily coming close to falling, sometimes having to pull myself upstairs using the handrail, and inability to walk any kind of distance. I've had P.N. for well over 20 years but it wasn't on prescription pain medication until after total hip replacement (after a failed pinning, both in April, 2022). I don't know if you or I will ever find out the real cause of our neuropathy - my neurologist tells me there could be a number of causes, not the least of which could be, in part, age (I'm 77). I've never been athletic (so no overuse of anything!) and am not aware of P.N. having been present in any family members.
All of that aside, the best advice I've seen comes from @johnbishop, the Volunteer Mentor from this group on Mayo Connect (and others here as well), which is to try to educate yourself as much as possible about options you can try in order to lessen the pain, sustain motion, and remain independent by investing in all the ways possible to attain those results. There are a bazillion different things that have been suggested by folks here on this discussion, and it seems that what works, or how well, is totally a matter of individual case. I do go to physical therapy every other week and also to my chiropractor every month. Pretty sure the prescriptions will be forever - just hoping that the strength doesn't have to increase. I invested in a BEMER this spring (through my physical therapist) - best thing I could have done. It has given me my hands back from carpel tunnel without surgery. And has increased my overall energy level, which means a more normal life without chronic fatigue (some of which was from dealing with pain).
Like @1kay2, I have prayed for you that God will lift your pain, and also that He will lead you to what will benefit you in treatment. Peace to you, Jerry - ~ Barb
@jerrymcg
Did you fall when you fractured your hip? I have congenital cervical and lumbar stenosis, degenerative disc disease and peripheral neuropathy (I am a 55 year old female first diagnosed at 42 and 47). I had similar symptoms to you and had surgery on both cervical and lumbar spine.
My suggestion is you see an orthopedic spine specialist and get MRIs of cervical and lumbar spine to see if you have any issues with discs/bone spurs/arthritis/vertebrae that is compressing your spinal cord/nerve roots/nerves that may be tied to your hip injury or degeneration with aging. My experience with neurologists is they are very limited in doing anything for neuropathy (was told there is no cure for idiopathic small fiber neuropathy and I have that, too). They test and test with EMGs/nerve conduction studies and prescribe certain medications that either don’t help or cause more symptoms. I was told by my spine surgeon that EMGs of your upper/lower limbs does nothing to identify nerve root/nerve health in your spine (radiating nerve pain from your spine may radiate to your legs, for example, but EMGs may show “normal” nerve health in your legs).
Have you had updated MRIs of your pelvis/hips to check bone/joints plus soft tissues? I had to get them done because I had pain/numbness/weakness in back/hips/buttocks and down my legs. It showed bilateral gluteal tendiopathy and bilateral hamstring partial tears which was adding to my spine pain/weakness/numbness.
I'm assuming that most of you have had the usual tratments? Injections, nerve blocks, etc. None of them worked for my severe, chronic pain. I finally went to a neurosurgeon who suggested a trial of the spinal cord stimulator. I did the temporary trial which reduced my pain by about 80%(along with the meds I was already on). I went ahead with the permanent trial. That reduced my pain by about 50%. But, it was enough to get most of my life back...cycling 30-50 miles aweek and working around the house again. It's not effective for everyone, but the trial is a way to find out.
This explains a lot.
I'm glad it worked for you - tried two different companies and was very disappointed when neither of them worked at all for me