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Optimism

Posted by friends27 @friends27, Aug 27 10:31am

Dealing with Idiopathic P Neuropathy is not easy. It’s a mystery to me and my neurologist how why my pain flared up so much in the last six months given my PN had no symptoms for so many years. I was diagnosed with it 30 yrs ago. Does anyone have examples of individuals who’s condition got much better for unknown reasons. I believe somewhat in the mind body connection and it is so important to remain optimistic and hearing positive stories can really help.

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NJ Ed | @njed | Sep 6 1:17pm
In reply to @ray666 "Hi, Ed (@njed) You're right, there is a lot of confusion concerning knee surgery. You've reminded..." + (show)
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Hi, Ed (@njed)

You're right, there is a lot of confusion concerning knee surgery. You've reminded me you’re bone-on-bone in both knees. That has got to be painful. I think you know my right knee is already a TKT, but it was done 20 years ago when I was 20 years younger, had Mell to help, and hadn't yet developed my PN balance issues. As I recall, the procedure and my recovery both went well.

Of course, "fond memories" of an earlier TKR only darken my dilemma over what to do now.

Oh, I almost forgot: that sepsis infection I had two years ago. The statistical rate of re-infection, even under the most sterile of clinical conditions, is disturbingly high.

I think your advice is sound, Ed: stay the course. Get that next cortisone shot. Keep up with the PT. If there's no guaranteed right road to follow, stay on the road you're on; you can always switch roads later (if the doc is still game to do another TKR) and, at a later date, if switching roads makes sense.

Onward, onward, ever onward! (Don't forget your cane, Ray.)

All my best to you, Ed.
Ray (@ray666)

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@ray666 Ray -- since early 2025, the cane is becoming an item which I now rely on more and more to be safe for reasons we both understand and have faced. I think your assessment as to the status of your knee is correct. If things change, a TKR is always possible down the road. Having your prior knee issues, as you're well aware, the pain level will be the driving force for any operation. Also, that two-year stat for reinfection is alarming. All needs to be considered.

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bjk3 | @bjk3 | Sep 6 6:53pm
In reply to @dbeshears1 "@ericmm I have heard a lot of folks here talk about the benefits of ALA. I..." + (show)
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@ericmm I have heard a lot of folks here talk about the benefits of ALA. I bought some, but then my primary care doctor cautioned me against it because my blood sugar can run low, and ALA could possibly lower it more. One of my Neurologists said he would like me to try Lyrica instead of Gabapentin. I ask if it would provide me some gains that I wasn't getting from Gabapentin, and he couldn't name anything additional I would get from it, just said most of his patients use it. So I didn't want to experiment with something that "MIGHT" keep me the same as Gabapentin - it could have been not as beneficial for me, plus I'd heard from others they gained weight on it. So unless it could make me be able to walk/bike/run again, or take away my numbness & tingling, I didn't want to add a weight challenge to my other health issues. I think we all have to be mad scientists to find the right balance for us! Good luck with your next visit! Debbie

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@dbeshears1
Right you are, Debbie. I concur. However, for me, the side effects from Lyrica, which I've taken for about 4 years, are less severe than those of Gabapentin, which I was prescribed first. Not a decision that's attractive on any level, but I've had to put up with a few extra pounds with Lyrica rather than debilitating depression with Gabapentin. Your thinking is straight as an arrow. And, I can't be sure if my gait/balance problems have anything at all to do with either of these medications. We just have to do the very best with what we know.
Blessings, my friend!
Barb

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Ray Kemble | @ray666 | Sep 6 6:54pm
In reply to @njed "@ray666 Ray -- since early 2025, the cane is becoming an item which I now rely..." + (show)
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@ray666 Ray -- since early 2025, the cane is becoming an item which I now rely on more and more to be safe for reasons we both understand and have faced. I think your assessment as to the status of your knee is correct. If things change, a TKR is always possible down the road. Having your prior knee issues, as you're well aware, the pain level will be the driving force for any operation. Also, that two-year stat for reinfection is alarming. All needs to be considered.

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@njed Ed– A cane has definitely become an item for me. I find myself using more and more around the house, which had not been true until only recently. If I'm to be brutally honest with myself, I can see needing a walker, especially under certain circumstances. For example, this afternoon I went to drop a parcel in a UPS drop-box. I parked at close as I could to the drop-box, but I still had to negotiate a number of irregular obstacles. Back in the day, when I was recovering from my sepsis attack and had to make weekly visits to the hospital's wound clinic, I used a walker to get around. I reveled in a walker's stability, like having personal guardrails go with you wherever you went. Today, after I'd finally lurched back to my car, I had a thought: Dammit, why didn't use my walker?!? Oh, this ol' PN! And oh, this ol' knee! I feel sometimes like my body's ganging up on me. 🙂 –Ray

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Ray Kemble | @ray666 | Sep 6 7:00pm
In reply to @greengold "@ray666 you mentioned cortisone injection. My sister used "durolane" injection, (not a steroid) . It lasted..." + (show)
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@ray666 you mentioned cortisone injection. My sister used "durolane" injection, (not a steroid) . It lasted about 6 months which allowed her to continue hiking, and then she had another shot. I believe she said it was also good for the knee, unlike cortisone.

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@greengold Hello! A few years ago, I was getting some sort of gel shot, and as I recall, it was only twice a year. I don't recall what the gel shot was; it's been so long. I continued with the gel shots until they were no longer helping me. That's when I switched back to cortisone. Now, unfortunately, the cortisone shots are losing their effectiveness. Thanks for your post! It was most appeciated. I wish you the very best! Cheers! –Ray (@ray666)

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spainmarshall | @spainmarshall | Sep 21 12:12pm

I have some GI neuropathy that has been helped by minimal activity, no caffeine, dairy, no chocolate, no nuts , gluten, alcohol free and a low histamine diet. I am also on gabapentin and starting Ldn.

I got over this once by following that diet etc… but went back too quickly to old diet and too much activity.

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