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

@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).

Here you will find a conversation about my personal Mayo PRC experience in 2020. I hope it's helpful.

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.

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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

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@vinran Hi Vince. How frustrating to have foot neuropathy after TKR, I'm sorry to hear about that unwanted souvenir. Congratulations though on having a positive attitude for yourself despite.

I'm curious, are you aware of Central Sensitization Syndrome and how it relates to neuropathy? You may find it interesting.

What strategies are you using to help foot symptoms while you wait through these next 6 months for more testing?

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I follow the dietary issues which I did anyway
and exercise every other day as prescribed by walking or the
Recumbent bike.
No, Not sure how that CCS would really help though?
Thx

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@vinran
I only throw CSS out there because many folks are not familiar with it. CSS explains the process the central nervous system goes through when upregulated from a number of causes such as surgery. It won't necessarily help but does help to explain how a condition becomes chronic. Food for thought, that's all

Keep on, keeping on Vince! Continued healing is wished for you. Will you keep us updated on your progress and share any tips you find helpful?

PS: A recumbent bike is awesome on the joints. I love mine!

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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?

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Hi Rachel, Thank you for your kind words and information. I just watched the video and found it very informative and also very scary. We are all still trying to understand why this would happen and realistically know we will never get to the cause. After watching video I see our approach has been to look at the SFN as though it was acute and not chronic. My son is still talking to doctors that want to treat this acutely so I'm struggling with exposing the reality it may be chronic.
Logistically we are on opposite side of the US and he in a location which does not have great health care options. This was part of our frustration in even getting a diagnosis.
How are you managing now? I believe your post for the pain rehab program at Mayo was in 2020.
Curious to hear if you are trying any treatments at all? I so appreciate you responding and the hope and positive energy you are present. Thank you!

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As a loving grandma too, try to look objectively at your son’s behavior with your grandson and (if he has) “a significant other”. My son (40) has anxiety/depression issues and before he went on meds, he was often angry, yelling, frustrated, irritable- at his children, wife, slow servers, drivers of other cars, etc. With meds (refused counseling), life for all of them is MUCH better. If this is happening in his house, maybe he’ll listen to you as to the effect of his behavior on the kids and his wife/SO.
Last thought- I’ve been thinking about this a lot- we know COVID is a virus that also attacks nerves. We know other viruses cause nerve damage (Guillain Barre, Epstein Barr). We know COVID infection, especially in younger people, can be very mild and that Long COVID (in mild cases too) can develop many months after the initial infection. This possibility may bring him a little comfort, rather than thinking the PN appeared “out of the blue”.

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Hello @lubelle - You're welcome! Being your son is in the early stages of his neuropathy diagnosis, I completely understand how some of the info I provided could be scary. I'm sorry for that, and in no way meant to alarm you. Not having a known cause is frustrating, when it comes to treatment. In some cases, nerves have the ability to regenerate over time, that would be a hope.

The info I provided you earlier can be tools to keep in your back pocket. I like to inform folks not to scare them, but to educate because I wish someone had offered me more. That's why I came back to Connect after my rehabilitation program, to help. I get a little overzealous sometimes out of passion.

I am managing fine now, thank you for asking. I've come to accept my chronic condition and have learned to manage using the many life-changing tools taught at Mayo's PRC. There are no longer "treatments" as I have been there, done that and say good riddance to what never worked.

It's a journey, and my best advice to your son is to stay informed about his health and condition, learn as much as possible, and be his best advocate. Remaining calm and taking care of emotional and behavior needs is important as he navigates the future. There are many good telehealth services for this. Also, proper nutrition and exercise is vital.

A while back I found this helpful book about SFN. It was collaborated on with my personal neurologist from NY, Mayo doctors and others. It's pretty cheap on Amazon. Here's a link:

And here is a discussion about the book and other helpful resources:

- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-book/

Connect is here to help, support and provide encouragement during challenges for all along the way. Do you mind keeping us updated on your son's progress?

Wishing you all the best.

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You have already been so incredibly helpful and I so appreciate your encouragement. I am going to purchase the book and continue to learn more. I will most definitely continue to update on his progress. I am still naïve but continue to hope to find "something" that will provide true relief. He will be visiting in August for 3 weeks and I hope to be more educated by then on SFN. Are you involved in any new treatments at all? I read about VM202 - a gene therapy that is proving to be positive for regenerating nerves. Thank you again for your encouragement and being a volunteer. I feel very powerless as his advocate, but with all of this information, I hope to regain some sense of some control for us both. Sincerely thank you!

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