Hi Kathy
I don't often come to this group as not many people seem to post here.
Sorry you are having such a hard time with neuropathy pain. It is certainly not fun.
I'm not sure I can offer you too many tips.
I've had neuropathy pain in my right leg for a little more than 4 years and still struggle. It is a lot better than when I started but it has taken all that time to try and work out what will help. And what doesn't!
My pain is from surgery on my back to fix disc bulge that was crushing my sciatica nerve. The bulge is gone but the sciatica issues are still there. I take medication to help and try to avoid the things that will create more pain.
It's a daily battle as you know.
I hope a few others pop in and are able to give some good tips for you.
Bigs hugs to you.

I sure hope more come on. Its so nice to talk with ppl who have the same problem that crop up constantly. Im trying so very hard to come around but its so hard. Im glad to talk with you Nessa. You have an incredible case too. I think someday theyll beable to give me some type of meds that help. Im not exactly sure how i got this. I guess ill never know.

I also joined the chronic pain group as that group has a lot of members. Some with similar issues and others with different issues but still able to provide tips and ideas. A lot more activity.
I have been working my way down some of my meds. I managed to ween off one of them which was amazing. And I have reduced some of the others which is also great. It's just slow going.
I also have regular massage and acupuncture which I could not live without.
Eventually I could get back in a pool to swim a little. Feel good when I do small movements constantly. Still have really hard days.
How is your pain level at the moment?

I sure do hope so. I could use any ideas i can read. I have the neuropathy in my legs, right arm and hand, and in my brain somehow. I bougt a wrist support and it really helps the wiist. My left foot and knee are quite swollen. How do i help that one? I sure would like to chat.

Hi Kathy,ive read some of your posts & just had to register so i could speak to you,i have widespread neuropathic pain due to a dysfunction in my nervous system?Have you seen a pain management specialist,i would love to chat with you.

Yes ive gone to 2 pain management centers. They never helped me. All they try to do is keep you dopey or you sleep a lot. The neurologist i went too told me they all do the same so quit trying them. The last doc. knew i was allergic to some meds, and id hallucinate on them. So you know what he was doing? Hed give me that med under a different name. The drugstore was the 1ST to discover it. I was getting sicker and sicker everytime id see him.

Hi there, been off air a bit lately.
Kathy and Maz, you both sound in agony. I could barely cope with neuropathy in my leg. How you go with other parts of the body is beyond me. So I am amazed at you both especially your determination. Try to keep that. It's what helps me achieve those little goals every now and then.
Finding the right meds for you can be tricky. I went through a few before finding the ones that work for me. And the doses as well. I started high doses and gradually (super slow) reduce the dose to the point that you can manage ok. Not foggy in the head but have some pain relief and control.
I researched a lot and talked to people and tried things out. Most things don't work but now I know. What works for one person does not mean it will work for me. So I took bits from everywhere and made a routine that works for me.
I hope you are both getting some good days and the nerves are going too nuts.

Hi Nessaleigh. I have neuropathy in both legs and my entire right arm. its kinda of hard to deal with. I havent got one doctor to help me with it yet. Your the only one ive met here. I wonder if were the only ones here?

Hi Kathy, keep searching for a really good doctor. Someone experienced in this area. They won't be able to help with the day to day stuff but if you can work out the medication with a great doctor that will enable you to then sort out how you can function each day.
I had a rheumatologist who sorted my medication (took me a few different types before I found what worked for me). Then I went through 3 horrible physios before I found 2 really great ones that helped enormously. I kept going with acupuncture and by 12 months I noticed a massive difference. Massage helps to keep the nerves stretched and relaxed.
I worked out that alcohol makes my nerves go nuts. I have to drink a ton of water (important anyway to keep the spine nice and supple). And I try not to eat too many things that leave me feeling sluggish etc.
I have an electric desk at work - so I can stand/sit.
I have a cleaner every fortnight to do the things that would aggravate my nerves.
And I realise and accept that I cannot do all the things I used to at the speed of light.
That's about the sum of how I try to cope with my nerve and back pain issues.
I don't think I could have done any of it though without the support of the people here at DS. So many people showed me how strong the mind and body can be. So many determined people. And extremely supportive.
I hope you are having some pain free moments and are able to find what works for you.

Well, Nessa, i cant seem to find a doctor to get started. They all seem to give up and back away because im so sensitive to medicine. Youd think someone would grab the bull by the horns and take a stab at it. Ill listen to anything. Try any idea. Somethings got to help.

Hi hope you are feeling better

not really. But the doctor put me on a muscle relaxer that seems to help some. At least when the pain gets bad.

I am new to all of this as well. Looking to share stories so I dont feel all alone out here. I have great support from family but they dont understand the pain no matter how I try to explain it. Now I have to let my childcare licence go and file for disability.
You can cgat with me anytime.