Connect
Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Would like to chat about problems and solutions for neuropathy
I have idiopathic neuropathy and it is getting worse I need to know what I might be doing wrong that’s exacerbating it. And what I might do to help myself.
Good afternoon @earlamond. Here's a hearty welcome to Connect. We are a group of patients, caregivers, and providers. We do not have medical licenses or background so we cannot diagnose issues or prescribe medication and treatment. What we can do is share our experiences with you letting you know exactly how we have tackled this problem of idiopathic neuropathy.
In order for us to be helpful, we will need to know what you are doing now and how your body is responding. Do you have an actual diagnosis of idiopathic neuropathy? What areas of your body are affected? Do you have pain, numbness, tingles? In the same place or at different places? Is your neuropathy peripheral....as in arms, hands, legs, feet?
Do you have any idea how you became a host for neuropathy? For example, I was an adventure-prone disaster.....falling off horses and down mountains. I am just scheduling by 14th orthopedic surgery. Somehow I think that must have led me down the neuropathy path.
What has helped me the most you might ask. First....medical cannabis. Second.....Mayo Connect and third.....a simple lifestyle. It was about time I settled down.
May you be free of suffering and the causes of suffering.
Chris
-
Like -
Helpful -
Hug
5 ReactionsSame here and I would like to know what would help
@earlamond I can see you want to connect with members who may be able to help you on your journey with neuropathy. Because of that, I have moved your post into an active discussion to allow you to better connect with members like @bill5 and @johnbishop.
I can see that Chris has welcomed you and shared some thoughts as well. I will let you start by answering some of her questions to allow members to get to know you and better understand where you are at in your journey.
-
Like -
Helpful -
Hug
1 ReactionHello @earlamond, I would like to welcome you to Connect along with @artscaping @amandajro @bethwiseman and others. While we wait to hear a little more from you on your diagnosis and symptoms I can offer a few suggestions based on what I have learned.
By far the most important thing I have learned since joining Connect is that you have to learn as much as you can about your specific condition. What initially helped me was reading the experiences and learning what others have shared. I posted my neuropathy story earlier in this discussion here - https://connect.mayoclinic.org/comment/310341/
The second thing that helped me was finding credible health information on neuropathy and not just the "neuropathy cure ads" you see when searching the Internet. There is a discussion you might find helpful - How do you identify trustworthy health information?: https://connect.mayoclinic.org/discussion/how-do-you-identify-trustworthy-health-information/ -- My two go to websites are:
-- Neuropathy Commons: https://neuropathycommons.org/
-- The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
I have no medical training or background but think that there is no cure for neuropathy and it all boils down to living as well as you can with neuropathy by using any method that gives you relief from your neuropathy symptoms. You might find this page on the Foundation for Peripheral Neuropathy as a good start at being more informed: https://www.foundationforpn.org/living-well/.
-
Like -
Helpful -
Hug
1 ReactionHi my name is Susan. I never did this before so I’m kind of lost. I have Neuropathy, I also have severe Osteoporosis, 9 fractures. The horrible pain I have every night. Is in my feet and lower legs, it lasts for hours, I do take Tramadol and Tylenol, I’m not much for medicines. I can’t tolerate Gabapentin. I don’t know where I belong in your group.
I’m isolated and feel just to read what others are going through is a blessing. Have a beautiful day.
Hello Susan @susantg, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I am sorry to hear you are in so much pain in your feet and lower legs. Thank you for sharing a little about your journey with neuropathy. I hope you know that you are not alone and there are many members who can relate to your pain. I am happy that you took the first step in looking for information to help you find some relief.
Are you able to share a little more about your neuropathy diagnosis? Is the pain in your legs and feet worse at night or is it the same during the day?
-
Like -
Helpful -
Hug
1 ReactionTwo and a half years ago after recovering from prostate cancer where I received seed implants and external beam radiation. I’m not sure if that has anything to do with my issue but 3 months later, I started feeling numbness in my right pinky toe. Just the inside of the toe. I have had lower back issues since my twenties because of sports. Sciatica is something I have lived with for many years. The chiropractor has been the answer until now. I had an MRI done not long after in early 2019 that showed a degeneration of my L3-L4, L4-L6 discs with disc herniation and mild Spinal stenosis. I had Physical Therapy, and three epidural injections over the course of several months with no effect on the numbness. One of the steroid injections was at the L5-S1 level and I was unable to walk far without a lot of pain in both hips for about 3 days. The numbness was continuing to spread along my right toes and right side of my foot eventually to the left foot toes too. The toe numbness was and still is only on a certain inside part of the toes. I was experiencing some pain in my back that was resolved with chiropractic visits but there was numbness down my right thigh, and I noticed a sore that was not healing. About a year ago I was able to sleep on my stomach and sides without any problem. Then over the course of the year I could not sleep on my stomach or either side without experiencing numbness down my right leg and foot. I went to a neurologist who did an EMG test and biopsy down my right leg. The EMG showed normal long fiber nerves but less and less short fiber nerve presents down my right leg His diagnosis was idiopathic short fiber neuropathy and prescribed gabapentin. I started to notice some mild numbness in my buttocks and groin area too. In December 2020, the tingling and numbness in my feet had spread to from the toes to my archs. I had a laminectomy in March of 2021 which has helped some back pain but the numbness down my right leg is still there and now the neuropathy has been increasing at a faster pace, with daily increasing numbness in both feet, only the short fiber though. I have good strength in my muscles. I have increasing tingling and numbness up my right calf and shin to the knee. I have lost right knee reflex, but the left knee seems okay for now but there is increasing tingling and numbness in the shin and through my groin and buttocks. I have foot and ankle swelling and I wear compression socks almost daily. I sleep in a recliner in my living room now. Also, wearing tighter pants causes more tingling down my legs. I cannot drive far in my car without feeling numbness creeping down into my feet. The short fiber numbness has increased in both feet to the bottom and heals, pretty much the whole foot and creeping up the legs. It is daily. My surgeon thinks I need more time but I feet like time is running out on finding answers. My neurologist has referred me to USC in Los Angeles. Now he thinks that maybe there is something going on in my pelvis or hips. I never had an MRI of anything but my back. My primary doctor did an ultra-sound of my legs for low blood flow but that appears to be okay. I have been searching the internet for answers and came upon this web forum and I read these stories and it made me very emotional. I have tried to maintain my feelings in front of my wife because she is an extremely emotional person, and I try to keep a positive outlook but that is difficult. The gabapentin, 300mg two to three time a day decreases tingling and numbness, but I am looking for more than just masking this problem. Getting in to see a doctor takes weeks and I get worse it seems every day. It is consuming my life just dealing with it. I have been very active in the past, but this has limited me to just getting by from day to day. Wearing shoes is so uncomfortable so I wear some sandals with good arch supports and a dimple pattern on the soles that have made wearing anything bearable. Any guidance and suggestions are very appreciated.
-
Like -
Helpful -
Hug
1 ReactionHello and I hate to hear what you are dealing with. I have been battling Idiopathic Small Fiber since 2014. I was diagnosed at the Rochester Mayo Clinic. I will be 100% transparent with you. I have never missed a day of work but my unbelievable pain is a cross I just bare. Healthcare has declined and no one truly gives a crap about me and my horrible life. Every road is a dead end and there is no hope in sight. That is the unvarnished truth. I am just trying to stay sane. I have tried it all and nothing has helped me. Doctors act as if I am am pretending to be so miserable. Sometimes I wish they could experience what I feel 24-7 and maybe they would be more interested to help. I pray your journey is better than mine.
-
Like -
Helpful -
Hug
1 Reaction