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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orsons | @orsons | May 7 4:24pm
In reply to @redhatter54 "Gabapentin is for your nerves. I take it along with Tramadol. We’ve found that combination helps..." + (show)
@redhatter54

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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Does Gapapbentin cause weight gain together with Tramadol? Don't know if GP would prescribe Tramadol. I might ask him when I speak with him this week. What dose of Gapapbentin do you take?

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furdog | @furdog | May 7 6:32pm
In reply to @artisticbone "My mother at around age 75 had PN after having had chemotherapy and was in terrible..." + (show)
@artisticbone

My mother at around age 75 had PN after having had chemotherapy and was in terrible pain. I found a PT who would treat her IF she would take an over-the-counter vitamin combination (Extra Strength Nerve Support Formula by RHP Health Products). It was by mail order and expensive for a variety of vitamins, mostly various vitamin Ds.

She took the vitamins and felt a lot better and also received treatments from the PT for awhile although she found them painful. After awhile just the vitamins were all she needed.

I ended up also with PN and also take those same vitamins daily for the last 25 years and they help a LOT. I also have foot reflexology twice a month. And, acupuncture, a massage session a PT session, and a Feldenkrais session monthly too, a lot of variety of bodywork. (I am a CranioSacral Therapist myself so aware of a variety of potential non-mediated solutions.)

I do not have any foot pain now, and can feel my feet. I do cardio at my gym 3-5 times a week plus 1-2 sessions of strength training weekly. I do stretching exercises given to me by my PT most every day for between 15-20 minutes.

I also eat mostly organic food, and am growing my own when I can. I do have other medical issues that I've had various medical treatments for. I still work 3/4 time and have an active brain, see friends, read, and spend time monitoring my lifestyle and noticing in-the-moment how I'm feeling along with checking in with myself at the end of each day for what I'm grateful for.

My clients and friends say I look 20-25 years younger than my actual age. I have a positive attitude and tend to look for the blessings and opportunities in life. I also tend to sleep between 8-9 hours a night which helps a lot too.

I love what I do professionally and see clients in-person, helping them live a better life themselves. By staying busy and in-the-moment I avoid spending time worrying about all the negative things that can happen. Being cautious helps too, not rushing, holding onto hand railings, etc. Noticing the beauty in nature daily too rather than dwelling on all the aches and pains (I have them too) helps me live a better quality of life that is mostly pain free when I take good care of myself.

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Thanks so much for your encouraging experience !

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paulbse | @paulbse | May 7 9:21pm
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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Wow, back in 1996, my doctor and I played with different cocktails of drugs for my idiopathic peripheral neuropathy, for the better part of a year. We finally settled on 200 mg of Tramadol, 60 mg of Cymbalta, and 4800 mg of Gabapentin. Consider yourself very lucky to be on such a low dose that works for you.

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bunnybear | @bunnybear | May 7 11:36pm

I agree. But you know how pain is…It’s a rolling target! What works today may not tomorrow. Regards, Gayle

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orsons | @orsons | May 8 1:41am

Absolutely right there. I thought Tramadol was a bit of a dodgy drug to be on. That's what ultimately killed Prince. A last resort drug like Morphine. Not good. These neurologistsvand scientists need to be researching more in cure and causation. God knows what caused mine. Right now it's there pins and needles and pain you couldn't make it up. 4 years of it now. My sister reckons it's years of wearing my collection of Doctor Martens. How could they cause this?

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orsons | @orsons | May 8 1:45am
In reply to @paulbse "Wow, back in 1996, my doctor and I played with different cocktails of drugs for my..." + (show)
@paulbse

Wow, back in 1996, my doctor and I played with different cocktails of drugs for my idiopathic peripheral neuropathy, for the better part of a year. We finally settled on 200 mg of Tramadol, 60 mg of Cymbalta, and 4800 mg of Gabapentin. Consider yourself very lucky to be on such a low dose that works for you.

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You are on a mixture. Never been suggested for me. Then again my local hospital and their Neurology department are not knowledgeable enough in Peripheral Neuropathy. I've been referred to Kings College hospital London. Got to wait until August.

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1 reply
paulbse | @paulbse | May 8 4:06pm
In reply to @orsons "You are on a mixture. Never been suggested for me. Then again my local hospital and..." + (show)
@orsons

You are on a mixture. Never been suggested for me. Then again my local hospital and their Neurology department are not knowledgeable enough in Peripheral Neuropathy. I've been referred to Kings College hospital London. Got to wait until August.

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Let me know how it goes. It's important to get a doctor who will listen to you and who is willing to experiment with different drugs and doses to provide you with some relief. I have found that they are few and far between. Good luck to you.

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orsons | @orsons | May 10 1:27am
In reply to @orsons "Thanks for that Verna" + (show)
@orsons

Thanks for that

Verna

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When I see Dr Hadden who is an expert in this most peculiar condition Peripheral Neuropathy. I am hoping he is expert enough to know what's what. A skin biopsy will be performed after consultation. Quite ridiculous really but it's times they do these biopsies. Hopefully after I've told him all and the impact it has had he may come up with a resolution. I am hoping he is a genius though .......maybe that's too much to ask for

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jimbral | @jimbral | May 10 2:49am

I had skin biopsy which showed “small nerve fiber” neuropathy as the cause of moderate to severe neuropathy pain. (Not diabetic)

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