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Foggy's "Invisible Illness" Support
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I’m new here. Have neuropathy. Decreasing my intake of gabapentine. Anyone taking this medication?

Hello

I had spinal cord surgery 4 months ago and ever since i have neuropathy. Worst on my hands, feet, stomach (like the feeling of a very painful belt), lower back. I started on Lyrica which gave me swollen hands and feet so i was stopped on that. I am now on the Gabapentine which is not helping much... I am trying to come off it (now on 600 mg from 1200 mg) anyone got any advise as to what might be good for pain relief?

Thanks, Ellen

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Surely it is up to your doctor AND surgeon as to when and why about your pain relief medication. Are they familiar with PN?

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I also have bad PN, and Drs dont know what to do about it. I tried gabapentin and it didn't do anything at all so I stopped it years ago. With PN you have to keep trying different approaches to see what works best in your situation. I find that moving around more vs resting is better, and I take lots of extra vitamins and supplements and wear ortho shoes....if Drs could feel what we feel I bet they would find a cure faster. They have no idea and most of us just live with it. It can drive you insane. I just keep working and hoping someday someone figures out that ahha moment with a cure.....lots of good ideas on this site this, you've come to the right place . Best of luck

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Thank you! You too

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I had de-compression surgery back in 2007 & have PN in lower legs and feet. My shoes are my feet 😊

I self inject B12 weekly and have decided to increase to daily. B12 works to maintain the myelin sheath that protects every nerve. B12 used for pain relief in some countries - but not UK !

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Hello Ellen

Could you describe the pain you feel in the stomach area ? I too have PN which started in feet & legs but has moved up to stomach mid back & under ribs which feel like I am being squeezed by a girdle like sensation & itching on stomach & ribs & back area. I feel at the end of my rope with 24/7 pain whereas it has compromised my life to the point of not having a life as I feel like I am only existing & not living. Pain meds do not help nor did Neurontin or Nortriptyline & side effects were awful. Feel so alone with this debilitating disease as no one including family friends or doctors understand what you are dealing with as it is hard to understand having pain 24/7 & how it affects every aspect of ones life.

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Yes I have the ‘girdle pain’ as you describe it... I had major spinal cord surgery...

I notice the pain becomes less when eating an alkaline diet, no alcohol, coffee etc (google it).

I am on a low dose of Gabapentine in combo with omega 3, Vit B12, paracetamol 4000 p day and I take a lot of Shilajit (tears of the Himalaya, also google ..), oh yes and TENS helps me too...

If I stick to all above, I’m ok.

Where are you in the world?

Good luck! The worst pain ever!!

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Haven't taken it but I did take Lyrica, which I think is a close cousins (drug wise). Lyrica had no effect on the pain, it only made me feel dizzy, and doped up.

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Yea, like Marz, I just started taking vitamins C, B complex, ALA, & Glutathione intravenous drip once a week. And in between the drip, orally, 3000 mg of B12, 2000mg B complex, 3 multiple vitamin & mineral/ day and one TRYPTANOL Tablet 10 mg. per day. So far it's working pretty good. Went from level 9 down -> level 3 (on a 1-10 scale). At night the pain increases to 5 but I can fall asleep and I'm sleeping (deeply) the night thru now. No more 1-2hour cat naps all night.

No drugged feeling. It's so much better!

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By the way, I started taking the B complex in mega doses because my blood work show B-1 really really low and my Dr. recommended taking it a supplement. My nerves need it to build up the damaged myelin sheaths. And btw, I'm eat healthy too, no sugar, no alcohol and mostly fruits, vegetables and flesh. Lot of water and watermelon (rind, seeds and all)

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When first taking neurotin I started out with low dose i think this helps, now I am taking 600 a day, finding i was sleeping all day, but have sense got ovr it, its the hardest thing for your husband to realize, this illness which is horrible does get worse, now I am having knee problems, will need surgery. The twice a day 300 works now I am thing maybe a 3rd one. My sister takes 600 all together at night with nighquil?

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I live in Ga in the US -I am ready to give up & die I cannot imagine living years with this unbearable pain plus I have spine issues & can hardly walk or care for myself. I live with my children as I had to stop working last year & now on disability which is basically nothing and could not live on my own. I go to my PCP and she has nothing more to offer and is about to retire so don’t know what to do about pain meds as the regular GP’s are getting out of the pain meds & want to refer you to a pain management dr. Thanks for responding to my question as the stomach pain & rib pain are the worse & getting worse each day. Hoping you find relief.

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Stopped at 6oo per day seems to help, more gabapentin just makes me more sleepy during the day, my sister takes this at night plus niquil, said she sleeps very well at night! so go figure?

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