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Thu, May 28 7:58pm · Neuropathic Knee Pain Etc. in Neuropathy

Hi @sunnyflower
I have small fiber PN, with many of the same symptoms.
I also have moderately severe knee pain. However, I have had an xray, and I know that it is caused by osteoarthritis.
However, I feel that my knee pain has dramatically increased since my diagnosis of PN. I have tried to find out if PN can exacerbate osteoarthritis, but I'm not convinced that I have found the answer.
Anybody else out there with more information?

Mon, May 25 2:09pm · Nerve Conduction Study: Risk vs. Reward in Neuropathy

Hi @robtlhughes
I understand your reluctance to go for the tests, although on balance, I think I would go.
The real issue is what is your final diagnosis. You didn't mention whether you've had other tests. You may actually have a treatable problem which is causing your PN. If so, the sooner you get treatment the better. That may be reason enough for your trip. However, be aware of the fact that a substantial percentage of people with PN are of unknown cause (like me).
As to specific treatment for the PN, you sound like you are aware of the fact that it is problematic, and often less than satisfactory.
I disagree strongly with the poster above who advises that "Lyrica will "definitely help the pain", and that you should try stem cell treatment. Lyrica may help with the pain, not definitely. Furthermore you are already on gabapentin, which is very much like Lyrica. It is important that you are on the proper dose, which the neurologists can help you with. As for stem cells, they are not yet approved for PN (or almost anything else), and trials have been disappointing.
Good luck!

Tue, May 19 12:39pm · FGFR3 ANTIBODY in Neuropathy

Hi Kathy
I just read most of the paper you referenced. From my reading, I do not think it supports your claim that RF energy triggers neuropathic pain.
Most importantly, the paper was retracted. I don't know why or by whom, but that generally means either the author(s) or journal decided after it was published that it was faulty in some way.
Furthermore, the author(s) concluded that RF energy may trigger pain in amputated limbs, but not in people without an injury like amputation.
None of the above means that you're wrong in believing in this theory. It simply means that there is no scientific evidence to support it, if in fact this paper is the "first" that provides the evidence.
Hope you are doing well.

Fri, May 15 5:04pm · Member Neuropathy Journey Stories: What's Yours? in Neuropathy

Hi Hank
Sorry for not replying. I get so many posts from this forum that I likely miss some.
Thanks so much fro the suggestion. I just ordered some.
I'll post if it works for me, although I'm a bit skeptical by now, having tried so many things.
Stay healthy. Thanks again!

Tue, May 12 1:16pm · Member Neuropathy Journey Stories: What's Yours? in Neuropathy

Hi all
This is my story.
I am 75. Up until about 3 years ago, I was (I thought) remarkably healthy for my age. I was skiing, road biking long distances, hiking, etc.
I was having the usual old guy's problems with urination, and eventually decided to have a procedure done. My urologist ordered a CT scan of my belly, and, to his and my surprise, discovered a large tumor (lymphoma) on my small intestines, and numerous other tumors on both kidneys.
Long story short, the lymphoma was resected, turned out to be very slow growing type. I probably had it for years. The kidney tumors were unrelated, and were determined to be something rare (onchocytoma), and not malignant, so they're still in there.
BTW, I finally had the prostate surgery, which went well, except that I was found to also have prostate cancer, but again, the very slow growing type. All these conditions are simply being watched for development
For years, I had been noticing strange feelings in my feet. They felt like they were sweating, but weren't. This started happening when wearing shoes without socks.
Around the same time as my surgery , the feelings in my feet began to get worse, to the point where I couldn't wear any shoes or socks without experiencing severe burning. Finally, I got what was going on, saw neurologists at UCSF, had the million dollar workup, including skin biopsy, and was diagnosed with small fiber neuropathy of unknown cause.
I've tried almost every medication in the book, and can't honestly say that any have helped much. Currently, I'm on 150 mg of Lyrica at night (I tapered down from 450 mg daily, just to see what happens, and honestly, I can't say for sure). I'm also on Cymbalta. I have tried tramadol (doesn't work for me), gabapentin (as expected, same as Lyrica), low dose Naltrexone (who knows) and various supplements, vitamins, acupuncture, gadgets, the entire catastrophe.
Ironically, with all these diagnoses, the only thing that bothers me is the peripheral neuropathy, which has put the kaboom on half my life.
I'm trying my best to live as much of my life as I can. In particular, I am still able to ride fairly long distances on my bike, which I do whenever I can.
What I tell friends who I suspect may have PN is that they should see a neurologist soon. If they're lucky enough to have a treatable cause, the sooner the better. Also, it is helpful to have an expert do the workup. As we know, the disease is complicated and tricky to diagnose and treat. It's also helpful to understand that with these types of diseases, it's not at all unusual for medical providers to sometimes not act as well as we would like. Some even dread seeing patients with these types of chronic pain problems. So, don't take it personally, or allow it to make you angry. That doesn't help.
I had to quit a very satisfying (although part time) job simply because I couldn't wear shoes and socks. I've also had to quit numerous recreational activities, as noted above.
Regarding social interactions, I have less than before. Some of this is because sometimes, I don't feel well enough to go, or the venue will make me uncomfortable. I was a life long serious traveler. but I hardly travel at all now. Also, I have grown tired of having to explain to people what's wrong with me. I look like a healthy 75 y/o man. People's eyes glaze over, and I feel I'm boring them. Ironically, I often feel better in company when I finally participate, probably because I am distracted from the pain. This has led me to trying to learn how to distract myself.
It's mostly our responsibility to find out what helps. It's almost always different for each person. There are ways to feel better. We have to do the work and experiments to find them.
Hope this helps.
Jeff

Mon, May 11 1:36pm · Cold feet due to neuropathy - need help in Neuropathy

Yes, good days and bad days, with no apparent reason most of the time. Loki must be the god of peripheral neuropathy.
Hang in there

Sat, May 9 2:28pm · Cold feet due to neuropathy - need help in Neuropathy

No, I haven't.
To tell you the truth, I'm a bit burned out on new treatments, having spent the past 3 years helping to support the PN Treatment Industry, not to mention Amazon.
I've come to look at this somewhat simplistically. I know I have an anatomic defect (lack of small nerve fibers proven by skin biopsy). Until or unless those nerves grow back, I expect to have to deal with the pain. I don't believe much of anything will work more than a little in relieving the symptoms, including standard meds.
What I do believe will and does work is distraction and mindfulness, which almost anybody with this or other chronic pain syndromes can prove to themselves, by noting that when distracted, they can have a few moments being pain free. Everything is the same, but you don't notice the pain, because you're not paying attention to it. The opposite happens when things become bad enough to the point where the anxiety causes a hyper-awareness state, which leads to even more pain.
The hard part is training yourself to make those moments last longer. As usual, easier said than done. No magic bullet, just hard work.

Thu, May 7 4:16pm · Cold feet due to neuropathy - need help in Neuropathy

@rwinney, I have the exact same symptoms of burning pain and red feet when wearing footwear or socks. I've found that wearing fleece lined footwear (like Ugg shoes and boots) helps a little. My neurologists thinks it's a form of erythromelalgia associated with the small fiber neuropathy.
I also suffer from very cold feet when exposed to cold. I think I prefer the cold to the hot, so I go around barefoot, or wear flip flops, even in the winter.
How long did it take you to go from burning to freezing? You called it a "spurt" in your post.
Thanks
Jeff