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Elective Amputation Re peripheral neuropathy

S

sutch24

Member
Messages
6
It's probably a stupid enquiry but I suffer with peripheral neuropathy, both lack of feeling and painful. I take pregablin all the time but if I have any fluctuation in my bloods I have o take tramerdol which just makes me drowsy. I average about 4-5 hours sleep a night but when bad 2hours at most constantly getting ulcers on my feet Ann just got over osteomyelitis which took 3months. I'm unsteady on my feet and won't walk far as if I do to much I get an ulerdi u think I could get my feet amputated as I feel I would have a better quality of life , and with all the ulcers it's going to happen any way.
 
That’s so sad to read this. I suffer chronic pain with my arthritis so fully understand how pain can get you down. Before you decide to take such a drastic course of action can you tell us more about your meds, diet and blood sugar levels. Maybe there is some room for improvement. There’s also a supplement called Alpha-lipoic acid which helps some people with neuropathy, I don’t know much about it but hopefully someone will come along that does.
 
I'm on max dose of pregablin . Control not brilliant but about to start on insulin pump the begining of December . Control problems mainly due to pain as rocket Ben episode bad I have been running my bloods about 11 as that helps with pain stops me having to take tramerdol but if bloods drop below 6-7 one in agony for a week or If they go above 16 . Also without any warning the pain can get out of hand then it hard to make it bearable again . I just don't have any life as miserable and grumpy with my wife and kids.
 

Have you ever tried R-ALA for your nerve pain?

It's not something I have used myself, but some people find it very helpful indeed, in terms of reducing neuropathic pain.

It must be R-ALA, not just ALA.

Personally, I'd want to try anything rather than amputation. It's safe to say that whatever loss of sensation you currently feel can only be worse, if the feet aren't there at all. Of course that doesn't take into account your pain, and I'm certainly not trivialising it.

What are your medical team saying about this?
 
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Call me crazy, but I would put off amputation for as long as possible. You have no idea how well the amputations will heal. Half a foot could eventually lead to above the knee. I would try anything first.

I have read about R-alpha lipoid acid helping neuropathy. I take it just to prevent,since my father and maternal grandmother both had it and my sister has the start of it. She takes it and said it helps her.

Ask if there is anything you can do to prevent further ulcers. Double socks without elastic? Shoes that breathe, with Velcro to make them more adjustable? Cushioning on areas that are prone to stress? In the hospital where I work in the US, we use a foam padding called mepelex. It has poor sticking qualities, so it sticks but can be removed without damaging the skin. They must have some ideas. I’m sure you already know you need to visually inspect your feet daily and keep them moisturized to prevent cracks. Just don’t give up. Push for some help and guidance.
 
Hi and weclome @sutch24

I am sorry, I missed this thread up until now, or I would have responded earlier.

I second @DCUKMod 's suggestion of R-ALA, on top of your current medication.

So sorry to hear about your situation. The pain must be so wearing, and I hope that your pump allows you to maintain a steady blood glucose and minimise the highs and lows that trigger the worst of the pain.
 
What are your usual blood levels like?
I had painful neuropathy in my feet and right hand, but it did fade, slowly but significantly, when I kept my numbers low for an extended peiod. In my case, it was apparently exacerbated greatly by a very high triglyceride count. I was on rosuvastatin for a while and it did help (seemingly) with the trigs and neuropathy. I wonder if keeping your bloods as low as safely possible would help. Dr Bernstein has some commentary on this matter

 
This is so saddening to read. I can’t imagine contemplating having my feet amputated

For what it’s worth, in my experience neuropathy can improve. I had crippling pain when the numbness subsided after diagnosis. It got worse as my control got better. Really depressing. I also had some ulcers during this time.Thankfully I was able to get through the worst of it and now the pain is completely gone. My feet are completely healed, with full feeling. Of course I have no idea how far progressed you are, but I hope very much that you’re able to find a way through this without losing your feet, even if it means suffering more initial pain as your glucose control improves.

Sincere best wishes, and good luck.
 
I'm not sure where you live, but I would suggest you get to a high risk foot clinic. You really shouldn't get ulcers after walking for a few hours so something is really wrong here. A HRFC can help with this, they should also have access to other specialists like an endocrinologist and vascular surgeon. Having things amputated is not a solution. You really need your feet.
 
Hi! Just read your message, you have given me hope, thank you for posting
 
Totally agree with above about foot clinic re ulcers. And I would hope that you are seeing someone who is helping about the neuropathic pain. Being somewhat pessimistic, sorry, but foot amputation might leave you with the pain (phantom) still. There are other agents to consider such as duloxetine/amitriptyline, and other opiates and lidocaine patches (sorry if you have already tried these - and I am not suggesting a treatment) as well as addressing any possible Vitamin D, vitamin B12 or thyroid , and optomising glucose control; I would hope that one could make the pains bearable.
Best wishes
 

Hi, I just came across your thread today. I’m wondering how you are and how you are coping now. I hope that things have improved for you. Did you watch the video of Dr Bernstein that was posted. I have taken comfort from that... hoping that getting blood sugars under control - easier said than done ... will turn my life around regarding neuropathy. I sincerely hope that you are getting some good professional help to help you get some improvement in your neuropathy.
Best wishes!
 
gemma_T1 said:
Hi! Just read your message, you have given me hope, thank you for posting
Click to expand...
Just to back this up. I had tingling in hands and feet and what felt like cramps (eye problems, brain fog, fatigue, everything apart from a stoke). Getting the sugar out and walking has 100% reversed everything.
 
Mbaker said:
Just to back this up. I had tingling in hands and feet and what felt like cramps (eye problems, brain fog, fatigue, everything apart from a stoke). Getting the sugar out and walking has 100% reversed everything.
Click to expand...

I have all of those and the terrible pain and numbness too ... I’m so pleased for you

I hope I can manage to do the same

Thanks for posting!
 
gemma_T1 said:
I have all of those and the terrible pain and numbness too ... I’m so pleased for you

I hope I can manage to do the same

Thanks for posting!
Click to expand...

Have you tried the R-ALA, Gemma? Several people swear by it.
 
DCUKMod said:
Have you tried the R-ALA, Gemma? Several people swear by it.
Click to expand...

Hi, I haven’t been able to get hold of it. I went to a few different chemists and they told me they had it but it turned out to be only ALA600 SOD, which I am taking anyway as it cost 25 euros!!!
I ordered some from another chemist and it also turned about to be only ALA too.
When I’ve finished I may try online if you can recommend a safe place to buy from.
Thanks for writing
 

Many people pick it up from Amazon. I know our friend, @Bluetit1802 uses a source she has found to be very reliable, and the goods to be effective, so maybe she can help.

I do know it isn't cheap, and the R-ALA costs more then the ALA, but then, as I understand it, it's effectively doubly potent.
 

Thanks a lot! I’ll try Amazon and let you know how I get on! Thanks a million!
 
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