Neuropathy after TKR: I'm 68 and fearful of future

Posted by daveage68 @daveage68, Jun 13, 2021

I had knee replacement 8 weeks ago. This seem to accelerate neuropathy in both lower legs. Numbness, feels like feet are freezing, legs feel heavy and tired after little exercise. I have always been very active, this is killing me.
Any success stories out there? I read where this is incurable Not sure if this is a quality of life I can live with. Do not want to be burden for wife and family. Looking for good news.

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

@dbeshears1

Please don’t give up; I spent 6 months in a wheelchair when I got my sudden onset of idiopathic PN at age 51. Today I drive - my brain finally learned how to help me balance again, restore confidence in where my feet were positioned, and walk with walker or cane, or waddle about short distances on my own. I have no advice on what questions to ask doctor though, as I feel I have asked them all over my 5-6 years with this, and my answers have always been “we don’t know”, (hence idiopathic). A couple university medical center doctors said to just sit and wait and see what happens (did I mention 5-6 years?) What DID happen was physical therapy; in rehab nursing home first, then in my home, then outpatient. Yes, it was hard getting around without my support system, but today I am grateful for where I am and am having fewer pity parties for myself. It may be different when neuropathy is caused by post-op, we’re all different on here, but I’m praying you stick it out with PT and are able to enjoy some freedom out of that wheelchair very soon! And keep communicating here on Connect, I have learned more on here from experienced people than I have from my doctors since neuropathy is so befuddling.

Jump to this post

I'm speaking for a family member, my son who was diagnosed with SFN at age 38 after going through a few stressful years in his life, SFN took hold. It came on suddenly and has the balance issues, pain, wet skin, etc. As he is/was very athletic and health conscious, the only thing we can think of was stress and anxiety triggered this. He has a toddler son and needs and deserves a long healthy life and is adamant against using anxiety meds for his stress. In fact, we are pretty sure the meds are part of the culprit here and was wondering if anyone else has taken benzos to control anxiety and then come down with SFN?

REPLY
@lubelle

I'm speaking for a family member, my son who was diagnosed with SFN at age 38 after going through a few stressful years in his life, SFN took hold. It came on suddenly and has the balance issues, pain, wet skin, etc. As he is/was very athletic and health conscious, the only thing we can think of was stress and anxiety triggered this. He has a toddler son and needs and deserves a long healthy life and is adamant against using anxiety meds for his stress. In fact, we are pretty sure the meds are part of the culprit here and was wondering if anyone else has taken benzos to control anxiety and then come down with SFN?

Jump to this post

@lubelle Hi Lubelle, welcome to Connect. You are amazing for reaching out as a proud, protective mamma bear to learn more about SFN. I commend you!

As a mom, and as someone who was diagnosed with SFN in my mid-forties, I understand your concern for your son's future at such a young age and having a toddler.

I can't answer your specific question about benzos for anxiety causing SFN, but I'm drawn to respond to you and offer up some other info about the potential reasons behind onset of chronic pain and symptoms, anxiety, stress-management, etc...

You may find the following video presented by Mayo Clinic's Dr. Sletten, interesting. It's about Central Sensitization Syndrome (CSS) and how it relates to neuropathies and many other chronic conditions.


Also, it might be worth a watch for your son as Dr. Sletten discusses ways to achieve better life quality despite chronic pain and educates on Mayo's Pain Rehabilitation Center (PRC).
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Here you will find a conversation about my personal Mayo PRC experience in 2020. I hope it's helpful.
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
Please let me know if I can be of any further assistance or if you have any questions about what I've provided. I'm rooting for your son, grandchild and you on this untraveled road.

REPLY
@rwinney

@lubelle Hi Lubelle, welcome to Connect. You are amazing for reaching out as a proud, protective mamma bear to learn more about SFN. I commend you!

As a mom, and as someone who was diagnosed with SFN in my mid-forties, I understand your concern for your son's future at such a young age and having a toddler.

I can't answer your specific question about benzos for anxiety causing SFN, but I'm drawn to respond to you and offer up some other info about the potential reasons behind onset of chronic pain and symptoms, anxiety, stress-management, etc...

You may find the following video presented by Mayo Clinic's Dr. Sletten, interesting. It's about Central Sensitization Syndrome (CSS) and how it relates to neuropathies and many other chronic conditions.


Also, it might be worth a watch for your son as Dr. Sletten discusses ways to achieve better life quality despite chronic pain and educates on Mayo's Pain Rehabilitation Center (PRC).
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Here you will find a conversation about my personal Mayo PRC experience in 2020. I hope it's helpful.
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/
Please let me know if I can be of any further assistance or if you have any questions about what I've provided. I'm rooting for your son, grandchild and you on this untraveled road.

Jump to this post

Rachel - thanks for sharing and allowing others to learn from you. It makes sense that part of your success was being helped to see the need to focus on yourself in order to reset your mind and body, which appears including you taking a sabbatical from Connect for awhile back then (before I found Connect)
You no doubt understand the stages of grieving we go through on here, and you have been wonderful in staying positive and helping us stay focused on positives than using our valuable energy being negative. I can see where a lot of us, myself included, can pull others more down at times instead of up. Thanks for being part of the good group of coaches on here that have overcome the negativity and are sharing your energies in helping us overcome ours!

REPLY

If daveage68 is still reading here, I hope he knows, or has been told by now, as I was, “You are not the burden. The disease is.” Keep working with your neurologist and if that doesn’t work, find another one. Do all the tests, which may wind up still as idiopathic. Keep your legs, core, and upper body strong through exercises, PT and chair yoga. If you can find Aquatherapy, the water allows for resistance to muscles, greater freedom
of movement, and safety with a knowledgeable PT in there with you. Call friends and listen to their lives. Keep your body and spirit as strong as you can. Stay connected here. I hope this somehow helps you.

REPLY

I have been in a wheel chair for 7 months now with post op neuropathy. in house rehab, now
home care pt, next is out patient pt. I will never give up ! My pt said she worked with a lady 1 year, she made it back and now goes to yoaga 2 times a week. another just woke up one morning and could stand up and she still walks with a cane but thats wonderful she got that far. HANG IN THERE

REPLY
@dbeshears1

Rachel - thanks for sharing and allowing others to learn from you. It makes sense that part of your success was being helped to see the need to focus on yourself in order to reset your mind and body, which appears including you taking a sabbatical from Connect for awhile back then (before I found Connect)
You no doubt understand the stages of grieving we go through on here, and you have been wonderful in staying positive and helping us stay focused on positives than using our valuable energy being negative. I can see where a lot of us, myself included, can pull others more down at times instead of up. Thanks for being part of the good group of coaches on here that have overcome the negativity and are sharing your energies in helping us overcome ours!

Jump to this post

@dbeshears1 Debbie - you are very welcome and I can't thank you enough for such kind words of appreciation and gratitude. It's nice to know that what we mentors do here on Connect is well reciprocated and appreciated.

Undoubtedly, we have all grieved our losses, and can either choose to stay in the grief mode, and let life pass us by, or we can work to find strategies that help pull ourselves up and forward to make the most of what we have. You said it perfectly, " I can see where a lot of us, myself included, can pull others more down at times instead of up". At pain rehab we are taught to "pull in the viewfinder". Mindset is everything and it does take hard work, there's no denying that.

Thanks again, Debbie! I'm happy you're hanging out with us on Connect, and I look forward to sharing "our" positive energies to continue helping ourselves and others overcome. Keep hope alive!

REPLY

I have the very same issue, I’m 74, had TKR in October 2020 and
Developed foot neuropathy shortly thereafter. Saw two Neurologists,
had an ECG Scan which checks the nerves in legs and a deep vein
ultrasound for blood flow and no issues. Went to a uninvolved general
surgeon because I then developed a swollen lymph node in my groin,
same side as knee replacement. Had an ultrasound for that lymph and the surgeon said the ultrasound showed no abnormalities but was swollen.
He advised me that some folks with TKR do develop foot neuropathy
AND could be the cause of the swelling in the lymph node. He wants me
to wait another 6 months, if no pain or lumps etc… and have another
ultrasound completed. If no changes in 6 months, he will do a biopsy.
He said the nerves are clearly effected during a major knee surgery and could
take 2-3 yers to correct itself, if at all.
I have no discomfort with the swollen lymph node but do with foot neuropathy at night With bottom of my feet. I take a 300-milligram tablet of gabapetin at night about 6-7pm and it helps me through sleep the night.
I too was very active, did everything and this has changed my life. I’m not giving up though, will see what happens by October.
My best to you, hope this helped.
Vince

REPLY
@efgh1020

If daveage68 is still reading here, I hope he knows, or has been told by now, as I was, “You are not the burden. The disease is.” Keep working with your neurologist and if that doesn’t work, find another one. Do all the tests, which may wind up still as idiopathic. Keep your legs, core, and upper body strong through exercises, PT and chair yoga. If you can find Aquatherapy, the water allows for resistance to muscles, greater freedom
of movement, and safety with a knowledgeable PT in there with you. Call friends and listen to their lives. Keep your body and spirit as strong as you can. Stay connected here. I hope this somehow helps you.

Jump to this post

Quite honestly, I get tired of hearing the word
IDEOPATHIC, it’s an excuse for any doctor who can’t find the issue causing the problem.

REPLY

See my similar situation and comments please.
Vince

REPLY

I am 85 and just joined this group looking for ways to help me with my RLS a d neuropathy. Yes sometimes I just want to cry but that doesn't help. Don't want sympathy just help.
Well I drink tonic water, cut back on coffee, do stretching for my legs. I like my wine and white doesn't seem to bother me but red does. I purchased what looks like tea bags that take the tanic acid and other things out of red wine. Oh and I haven't tried yet but someone suggest foam roller e excise on back and legs. Don't give up keep reading from other people for help.

REPLY
Please sign in or register to post a reply.