Living with Neuropathy - Welcome to the group

Hi, my name is Helen and I have Perpheral Neuropathy. I live in Australia and I was wondering if there is a support group on line. I just feel like I'm all alonewith this Chronic disorder. It would be nice to talk about my neuropathy. I was diagnosed with Perpheral Neuropathy in 2014, but has suffered with severe cramping in my feet for yrs now it has developed much further. I have been to 3 different neurologist and they have not found why I have Perpheral Neuropathy. Been through many testing but have come up all negative which is good but I still don't know why I have this neuropathy. My last neurologist said my next step would be a nerve biospy, but it seems no one does them in Australia. I have been prescribed many different drugs and the only one I take is Lyrica. I use to take a high dose but I have weaned myself to 75mg morning and night. I have been to hell and back with the pain.

@helenholland3
Hi Helen, welcome!

Sadly you are definitely not alone in this problem of peripheral neuropathy. If you want to get to know how things are for some here there are some good all round discussions here, one being "Living with Neuropathy" linked here https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/ where you will find a gamut of different PN related topics.

My wife's PN also started in 2014 after her second infusion of chemo for breast cancer. She knows what caused hers but lots of people never know what the cause is. I have kept a list of things I have heard people say theirs was caused by. Here it is:

b12 deficiency
too much vitamin b6
surgery
chemo
diabetes
hypodermic needle injections
statins
oxylates
damaged blood vessels
shingrix injection
IV port
seizure medication

There are probably many others, these are just some that people have been able to identify. So do not feel badly if you have difficulty in figuring out the cause. You are taking Lyrica. Does that help? Lots of people take that or gabapentin.Others take Cymbalta (duloxetine). BTW, there are two other Connect members I know of in Australia, one is Barry @user_che214927 and the other's name is Darren @darrenm both of whom live in Victoria I believe, not far from Melbourne.

I would be very surprised if you could not find anyone able to do a skin punch biopsy or a nerve conduction test for you there. They are fairly common methods which doctors use to diagnose PN. I'd advise to keep asking and looking, if that is something you want t do.

I hope you find solace in connecting with people here. I would recommend using the links at the bottom of any Connect page to find out more about how to maneuver around on Connect, such as "About Connect" and "Getting started on Connect" etc. I am happy you have found this forum, it's a great way to meet people and to discuss PN with them as well as all kinds of other health issues . Glad you are here! Best, Hank

Hello Helen @helenholland3, I would like to add my welcome to Connect along with @jesfactsmon @larrymc and other members. You will notice that we moved your post to an existing discussion - Living with Neuropathy -- Welcome to the Group. If you click the VIEW & REPLY button at the bottom of the email notification, it will take you to this post in the discussion.

I also have idiopathic small fiber peripheral neuropathy. You can read my story along with those of other members in another discussion where we've shared our diagnosis, our personal experience and what has helped us.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You mentioned the only drug you now take is Lyrica and you've tapered down to 75 mg in the morning and evening. Does that help control the pain from your neuropathy?

Hi John, no it doesn't control my pain, I get more pain but I can cope so far. I have done this because I heard many times that Lyrica is a dangerous drug.

Hi, my name is Dean. I am an 81 year old female and was diagnosed with peripheral neuropathy about 6 years ago. I am not diabetic, no obvious reason for neuropathy other than I had low B-12 (185). I now have a B-12 shot each month. My neuropathy has steadily gotten worse. I now take 1800 mg of Gabapentin daily. It bearly touches my numbness and pain, however if I forget to take a dose I am in worse pain a couple hours later. I have a pulling of the muscle (or ligament) in my feet, pulling inward, very painful. I have to force my foot back straight. Everything feel better when I walk, but my balance is not good. Any suggestions for something to help me?

@helenholland3
Hi again Helen, when they moved your post from your original discussion I thought perhaps you did not see my initial reply to you (6 posts back). I point it out in case you did not see it because it mentions other things which people have identified as causes of their neuropathies. I think it is helpful for you to know that there are a lot of different things that can cause neuropathy, since you were diagnosed as idiopathic and also have had trouble finding someone to test you there in Australia. Best, Hank

@deanbiglets
Hi Dean, welcome to Connect! You are the second one that I know of who said their peripheral neuropathy (PN) was caused by a low b12 level. Another member, @rwinney also developed near crippling neuropathy in many parts of her body (feet included) and is totally convinced ( as was her doctor) that low b12 put her in that condition. I have confirmed through some online research whereby other websites mention b12 as a possible cause of PN, so obviously a number of people are in that category. As far as the muscle issues you are experiencing, I do know that quite a few people here swear by Myofascial release, have you heard of it? There is a discussion here that addresses it that you might look at:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/?utm_campaign=search
This might be helpful to you, for both your feet and you knee issues.

Regarding medications, there seems to be a pattern I have noticed that physicians rely on which include gabapentin, Lyrica (pregabalin) and Cymbalta (duloxetine). Some people are helped by one of these, many are not. Many people after trying these unsuccessfully (like my wife) move on to a variety of relaxants and stimulants such as THC based marijuana or cannabis oil as well as kratom, ketamine, etc. You may eventually decided to explore one of these if you find nothing else for relief of your pain. I do hope you are able to find a way to cope with your pain so you can continue to lead a normal life. Unfortunately, my wife's PN in her feet/ankles (since 2014 from chemo) has reduced her world considerably, a very sad state of affairs. Best, Hank

Thank you for letting me join the site. I have fairly horrific peripheral neuropathy in my feet and toes due to diabetes. I am looking forward to seeing how others combat this pain. Signed, Steve, Valparaiso, Indiana

Hi Dean @deanbiglets, I would like to add my welcome to Connect along with @jesfactsmon and other members. I was told by my neurologist that there were no medications that help numbness from neuropathy. Before I was diagnosed by a Mayo neurologist, my primary care doctor prescribed Gabapentin and I took it for a few weeks with no difference before I stopped taking it and had the appointment with the neurologist. I'm 77 and also have some balance issues when I walk. I've found using trekking poles or Nordic walking poles allow me to walk and help with my balance. If you love to walk and it helps you feel better, you might want to give them a try.

Nordic Walking vs. Trekking Poles - What's the Difference?

@mojosteve1961, I'm happy you found Connect and hoping it helps you like it helped me become a better advocate for my health by learning as much as I can about my health conditions. Here's another discussion and information you may find helpful related to diabetic neuropathy.

- Diabetes & Taking Care of Your Feet - It's Important!: https://connect.mayoclinic.org/discussion/diabetic-neuropathy-its-important-to-take-care-of-your-feet/
- Foot care with diabetes: https://connect.mayoclinic.org/page/take-charge-healthy-aging/newsfeed-post/foot-care-with-diabetes/

I see you are from one of my all time favorite popcorn ordering locations - Valparaiso, Indiana. In my younger days, I had a friend who was as crazy about popcorn as I was. We would order 20 lb containers of popcorn from Orville Redenbacher, the King of Popcorn - https://www.roadsideamerica.com/story/35463. Have you found any tips that help your feet feel better?