1. < Neuropathy

Peripheral Neuropathy life changing

Posted by orsons @orsons, May 3 7:08pm

It all started with pins and needles in one foot. I left it but finally went to hospital and they said my thyroid was underactive. So I was put on tablets to regulate my thyroid but the pins and needles remained and then went to other foot as well. I went to neurology and had MRI of head and back and later that year had another MRI but apart from stenosis there was no compression. I was very ill back in 2020 with other ailments which remain which is all rather strange. This neuropathy has been life changing. I take maximum dose Pregabalin but it doesn't really help save if I come off it the pain and discomfort could become worse. I have tinnitus and gastric problems digestive issues. I am going to see a specialist to see if I might have autonomic neuropathy which I hope will be ruled out. I just cannot accept what has happened to me.

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paulbse | @paulbse | May 6 4:19am

If you wish to minimize the pain from neuropathy, you must eat healthy meals and smaller portions. And this I cannot emphasize enough, eat your last meal no later than 6:00 pm - 7:00 pm, and no snacking of any kind after that before bedtime. Every time I break this self-imposed rule, my neuropathy goes wild keeping me awake most of the night from the shooting pain in my feet. Try it and see if it works, you have nothing to lose.

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orsons | @orsons | May 6 8:20am

600mg is maximum dose allowed here in UK. Don't forget it's a street drug as well. Can't imagine why.

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orsons | @orsons | May 6 10:07am
In reply to @paulbse "If you wish to minimize the pain from neuropathy, you must eat healthy meals and smaller..." + (show)
@paulbse

If you wish to minimize the pain from neuropathy, you must eat healthy meals and smaller portions. And this I cannot emphasize enough, eat your last meal no later than 6:00 pm - 7:00 pm, and no snacking of any kind after that before bedtime. Every time I break this self-imposed rule, my neuropathy goes wild keeping me awake most of the night from the shooting pain in my feet. Try it and see if it works, you have nothing to lose.

Jump to this post

Thanks for that advice so eat little and often and no later than 7.pm. I have nothing to lose by trying this. Not a big eater anyway due to gut problems which I think is linked with all this.

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bunnybear | @bunnybear | May 7 7:55am
In reply to @paulbse "Out of curiosity, how much do you take daily?" + (show)
@paulbse

Out of curiosity, how much do you take daily?

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Right now I am at only 200 mg. Back when I took something like 900mg I developed problems with my legs and ankles swelling. So I changed to Lyrica at that time. Then when I got shingles the doctor put me back on gabapentin on a dose I’ve forgotten but I had no bad side effects. Since Lyrica made me gain so much weight I went back to gabapentin on a low dose and it helps a lot.

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julbpat | @julbpat | May 7 8:05am
In reply to @pnpam75 "Sounds sadly too familiar to me. What are AFOs? All these abbreviations are new to me...." + (show)
@pnpam75

Sounds sadly too familiar to me. What are AFOs? All these abbreviations are new to me. Peripheral neuropathy has taken over my life in last two years. Now I have MGUS ? as well. I have zero balance as of about a year ago and several falls. I use my newly acquired walker “ almost” all the time. I greatly appreciate “Connect” as I am learning so much about this dreadful condition.

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As far as abbreviations go, Google will usually identify them for me. I jut type it in the search box. I’ve learned through Connect that TKR is total knee replacement!

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orsons | @orsons | May 7 8:57am
In reply to @bunnybear "Right now I am at only 200 mg. Back when I took something like 900mg I..." + (show)
@bunnybear

Right now I am at only 200 mg. Back when I took something like 900mg I developed problems with my legs and ankles swelling. So I changed to Lyrica at that time. Then when I got shingles the doctor put me back on gabapentin on a dose I’ve forgotten but I had no bad side effects. Since Lyrica made me gain so much weight I went back to gabapentin on a low dose and it helps a lot.

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Hello yes I think I'll speak to my doctor about going on that. I don't eat much but Pregabalin seems to retain water and possibly slow metabolism. I'm not medic but it's a gut feeling.

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pnpam75 | @pnpam75 | May 7 11:24am
In reply to @julbpat "As far as abbreviations go, Google will usually identify them for me. I jut type it..." + (show)
@julbpat

As far as abbreviations go, Google will usually identify them for me. I jut type it in the search box. I’ve learned through Connect that TKR is total knee replacement!

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Thank you! Really helpful. So would THR be total hip replacement? If so, I have had four(4) THRs! I wonder if I set a World record? Not good.

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orsons | @orsons | May 7 1:18pm
In reply to @julbpat "As far as abbreviations go, Google will usually identify them for me. I jut type it..." + (show)
@julbpat

As far as abbreviations go, Google will usually identify them for me. I jut type it in the search box. I’ve learned through Connect that TKR is total knee replacement!

Jump to this post

To be perfectly frank I didn't know what lol meant for ages and felt I should know but was afraid to ask!

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redhatter54 | @redhatter54 | May 7 1:35pm
In reply to @orsons "Well I've been on Pregabalin 600mg for quite a while but it doesn't really help. My..." + (show)
@orsons

Well I've been on Pregabalin 600mg for quite a while but it doesn't really help. My doctor said thing is pain might be even worse coming off it. I gained about 10 pounds in weight and I don't eat much. Pregabalin seems to cause water retention. That said it is supposed to be best one for PN save Tramadol but that's a killer in the end isn't it.

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Gabapentin is for your nerves. I take it along with Tramadol. We’ve found that combination helps me with my idiopathic neuropathy. It took about 5 years to get the right combination of medications to work.

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