Newly diagnosed : Hello, I’ve just been... - Neuropathy Support

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Newly diagnosed

Bethany_rachel profile image
9 Replies

Hello,

I’ve just been diagnosed with Peripheral Neuropathy and struggling really bad with the pain. I’m only 23 and I’m very active but it’s stopping me from doing exercise because it just causes so much pain afterwards. Doctors have given me Codeine and I’m a little apprehensive to take this due to may becoming addictive but nothing else is working! Has anyone got any advice? What else do people do for pain relief to help them get on with their lives?

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Bethany_rachel profile image
Bethany_rachel
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9 Replies
RoadRunner44 profile image
RoadRunner44

Go online and ask Google best medication for peripheral neuropathy. There's lots of useful information. Otherwise go on the restless legs forum and ask for Manorbia to help. He knows everything about these conditions and is the best for advice and will give you real help and support.

Chrys 👍

martino profile image
martino

Hi! I have Small Fibre Neuropathy as well as RLS. I see a neurologist from time to time. I take Pregabelin for the pain which I think mostly comes from neuropathy but Restless Legs is probably involved as well. I also take Tramulief, a longer lasting form of Tramadol, and this helps the pain. I have a codeine and paracetamol (30/500) and this also addresses the pain. Opioids are frowned on by some because of addiction possibilities but if used properly then they are ok. My medication mix works in that the pain level moves from, say, 7 to 3 or 4. I am rarely without pain. The person on the RLS forum is Manerva.

Hooha215 profile image
Hooha215

Hang in there. I have Polyneuropathy as well and effects entire body extreme pain. The only thing I found that helped was CBD/THC oil. Really helped dull some of the pain. For your feet MagniLife foot creme for diabetic neuropathy.

Bethany_rachel profile image
Bethany_rachel in reply to Hooha215

Thank you I will definitely look into those!

Cb1963 profile image
Cb1963

What a shame that you have been diagnosed with PN, I sympathise with you,i have had this condition for many years and its extremely painful, the symptoms and pains can come in different guises, pins and needles, burning sensations, shooting pains,you name the pain you'll probably be able to explain it,I have it in my feet, legs and hands,definitely don't smoke, and keep the alcohol to a minimum, there's medication available to help if you are struggling with pain,pregabalin, gabapentin, or duloxiten are used,they aren't always suitable as nerve damage is notoriously difficult to treat,but this might be useful if you find pain is holding you back,I have been reading that acupuncture has been getting good reviews, but this was for patients who were receiving chemotherapy,maybe make enquiries with your health centre if this available, or perhaps have a look online in your local area for a recommended specialist who can do this treatment,I take a tablet a night to help aid with sleep, as I find my feet are always 'hot' so trying to get some sleep is important, I'm always trying to find a cold spot in the bed lol,its important to get a decent night's rest, so all these things are worth looking at,don't be afraid to ask your doctor, it's your health that's matters, and try not to get stressed out to much,as this gets the nerves on edge,and it gets the pain receptors going into full drive, have a calm surroundings, and gentle attitude, and hopefully the pains won't be as bad,I know it's a long post, but you need to have the information,best of luck, thanks.

geoff1940 profile image
geoff1940

As with my father, this affliction came to me much later in life (I am now 80). I presume you have read my original description of my experience and are aware that CBD (the non-hallucinatory component of marijuana) has totally eliminated the shooting pains I had been experiencing in my feet and legs. Although the progression up my lower limbs seems to have lessened, it has recently appeared at my finger tips, so the CBD is not a cure and as far as I know there isn't one. I have previously suggested to fellow sufferers like yourself to give it a try it has no bad side effects that I'm aware of and it does seem to help me sleep, but I gather it doesn't work for everyone. In my (non-medical) experience, it's a low-risk thing to try.

I am convinced that it's a useful supplement to the body's natural healing mechanisms because I had a severe burn on my hand in kitchen accident (several fingers and thumb and across the palm) and after applying the oil topically 3 times over 3 hours there was virtually no pain and I was able to use the hand normally the next day. If you think about, it the burn was being treated both internally and externally ........ there are no scars.

I wish you luck.

Yellow77 profile image
Yellow77 in reply to geoff1940

Is this the CBD oil that you can buy in shops? Or does the doc prescribe it? I’m in the UK? Thanks everyone.

geoff1940 profile image
geoff1940 in reply to Yellow77

I live in Canada, so cannot comment knowledgeably on what you can buy in shops in the UK, but if you go to a reputable retailer my guess is that it's much the same. When I first tried it myself it was prior to legalization in Canada and that's exactly what I did. Good luck!

privateer profile image
privateer

For pain, Pregablin (and its cousins) are often mentioned Percocets are the mildest narcotic on the list but you have be careful. They are addictive and don't mix with alcohol. If you imbibe, you have to stop at least until you have won this fight. After that boost all vitamins (especially B6, B12, Folic Acid, D3+, a comprehensive General Vitamin tablet and all essential Amino acids like L-arginine, L-lysine L-Valine etc., 9 in total. It's working for me so far, but I'm only 4 mths. into the regimen.

As always...Best of luck.

Andy

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