Living with Neuropathy - Welcome to the group
Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.
I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.
We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?
Interested in more discussions like this? Go to the Neuropathy Support Group.
Hi Ray and thank you for your kind reply...
I have read lots of online stuff about different neuropathic pain , mine fits the autonomic type as my digestion is very poor.
I am still thinking some of this is a symptom of a circulation issue though.All my heart tests are OK and so was a recent chest xray however my hands and feet are always very cold,I'm lightheaded alot and have really bad pain after even eating a piece of toast.! My weight is stable but only because I eat tiny meals often and am no longer able to exercise. Conns disease complications are usually cardiovascular because of the damage caused by hypertension, and boy my BP was high! I don't feel I've had the appropriate scans to look at this though.My Gp doesn't agree though and neither does my gi Dr. I would have this scan done privately, however I need a Dr to refer me( angiogram) and he won't.... The frustration is enormous!!!! Thank you for reading this.....
I finally was diagnosed at the age of 81 after several years of suffering with pain in my feet and balance problems. Some days are worse than others. My diagnosis was Idiopathic length dependent axonal sensorimotor polyneuropathy. My life has changed radically, but thanks to a supportive loving husband I can still find joy in my life. My neurologist has me on 900 mg of Gabapentin daily. Also I wear compression socks. I thought the Gabapentin wasn't helping me so I stopped it for one week, and then realized my symptoms were worse. I have accepted my condition and just will have to adjust to my limitations. Happy I have found this website.
Hi @peachambeauty, Welcome to Connect. Neuropathy does change our lives. Like you mentioned, maintaining a supportive loving husband and family definitely helps fill in the blanks and helps us get through the day. There are a lot of discussions in the Neuropathy Support Group if you are looking for specific topics. Here is Neuropathy Support Group page that lists the discussions - https://connect.mayoclinic.org/group/neuropathy/.
I think one thing that really helped me when I was first diagnosed was learning as much as I could about my condition and options available to provide relief. Here are a couple of sites if you haven't already seen them:
--- Foundation for Peripheral Neuropathy - Living Well: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.
Do you have any questions you are trying to get answered?
All the best with your book, Ron! It should prove an inspirational story and first-person, inspirational stories will always be welcome indeed. ––Ray
Hi, Sally!
And welcome! Yes, adjusting to limitations can prove quite the challenge. It has for me. Not a day goes by that I don't say to my partner, "I wish I could help you with that … "Fortunately, she's totally understanding, as you say your husband is, too. Life continues to have its rewards.
Best wishes to you!
Ray
Hello, again, Tina
Thank you for replying. Unfortunately, I'm running out the door and will be gone for the rest of the day, but I did want to say, if briefly, I hope you'll continue to post. That's one of Connect's virtues––perhaps its No. 1 virtue––how we all learn from each other.
My best wishes to you!
Ray
Thank you for letting me in.
Welcome @jrzees1942, Beautiful rainbow photo! Do you mind sharing what brought you to Connect?
I have had DPN since 2006 and now I have to use a walker to get around.
In pain all the time. Have been taking Lyrica all this time, also use a Vpod unit before bed time.
Hoping to get some input about this disease.
I have idiopathic neurnopathy and have increasing difficulty with balance and walking