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.
Thank you for you reply. The pain starts where the injection was given and travels throughout the leg, so I know where the nerve damage occurred. I know that they can do surgery and cut the nerve where the damage is but I am allergic to Heparin so any surgery could be a problem. I am also on blood thinners. Hope you have a great day. Thanks again Toni
@normazick Norma, another thing you might consider is modifying your lifestyle, including the 3 biggies, diet, exercise and sleep. Since you still have hope that your neuropathy could still subside and maybe disappear altogether, one thing to know is that lifestyle changes might help, such as reducing sugar intake as much s possible (including label reading to see how much is hidden in products). Try to keep up at least moderate exercise if possible, walking is great or swimming. You may also want to research some supplements, such as B vitamins (but avoid B6 if possible, bad for some with PN). Also, R Lipoic Acid and Acetyl L Carnitine are ones my wife takes. There is a ton of stuff to learn about and if I were you I would try to build a regimen asap to get on top of your PN. Its all about research, if you can do it. Staying with this forum will help you a lot! Hank
Hi Norma @normazick, Welcome to Mayo Clinic Connect. There is another discussion you may be interested in joining in to learn what other members have shared about Chemo-related Neuropathy -- https://connect.mayoclinic.org/discussion/1st-time-at-mayo-for-neuropathy/.
You may also find some helpful information in the following article - What are the best remedies for neuropathy from chemo?: https://www.medicalnewstoday.com/articles/323481 Here's an excerpt from the article (link in the article to the 2014 study):
"Outlook and takeaway - Neuropathy can be extremely painful, but it is not usually permanent. For most people, symptoms go away after they stop chemotherapy. Sometimes it takes a few months for symptoms to fade. A 2014 study found that 30 percent of people still had symptoms of CIPN 6 months or longer after stopping chemotherapy. In rare instances, neuropathy can be permanent, but there is no way to predict whether this will be the case. Although CIPN can be debilitating, it is important to keep in mind that symptoms almost always improve."
It's a good sign that you don't have pain and can sleep. Has your doctor suggested any treatments or therapy to help with the fatigue and numbness?
Betty, I just want to add that any IM (intra muscular) injection can pose a risk for nerve damage regardless of the medication. Sorry to say, although it is very rare, it can happen. Toni
@jimhd Jim, Absolutely, I feel prednisone is commonly used. People have to look at the benefits vs the risks to determine if it is form them. Prednisone decreases your immune system so it can slow down the progression of an illness and also slow down the healing process. Toni
Jim, I figured as much. That's so great!! I have a granddaughter named Sayde Sunny. 😊 I love the name Sadie!! Hope you have lots of victory today. Much peace, Sunnyflower
@johnbishop, HiToni@avmcbellar Ditto!! Thank you from the bottom of my heart! 👍♥️
Hi Colleen I am interested I am a little bit confused I alSO SUFFER FROM NEUROPATHY I WISH I COULD SPEAK TO SOMEONE
@johnbishop. Hi Guys. Colleen, I don't have to type your Mayo name for you to see my like and reply bc I 'm replying to your post correct? There have been soooooo many posts I don't know I was supposed to type in everyone's Mayo names who were included in the initial post and appear at the very top of the post I am replying to if I want them to see it and also if I include a member 's name in my reply I should type their Mayo name somewhere in my reply as well. It's difficult for me to do bc I can only remember about 3 letters of a name at a time so have to keep scrolling up and down several times to type out each person's name. It's also hard on my eyes. I 'm just learning. IA member has helped me learn but I' m also asking a few if I 'm understanding correctly bc I have been having to keep asking that generous person questions and he has been so patient with me and generous with his time.
Jonn and Colleen, I MUST join the bones/joints/muscle group. I currently receive 30 to I believe 40ish emails daily. I yhink. How could I handle more and, how would I keep the group emails separated from each other?
Feeling overwhelmed. Largely bc of pain, meds and scary new diagnoses that don't stop coming, and serious decisions about treatments. Also facing new invasive (painful) diagnostic and treatment procedures and 2 surgeries (4th back for "severe" spinal canal stenosis and brachisl artery stenosis). Also my recent bone density scan revealed my already severe osteoporosis (have spontaneously incurred 3 pelvic, one rib fractures). My Endocrinologists have been trying to get me to take Bisphosphenates for it but they can have severe, painful and serious side-effects such as, believe it or not, fractures in femur, can be bot legs at same time and a tumor in a femur!!! 😢 Then, sevrre joint/muscle flu-like symptoms and stomach pain and nausea, etc., etc. And, these can last the duration of the medication of which my choices are injection every 6 months or IV yearly. Ug. The worst of it is that they affect the immune system. They pretty much are immunosuppressants as I read in a Harvard medical journal. I am already taking to immunosuppressant. I was on 3 but had to discontinue Plaquenil AKA hydroxychloroquine because after 20 years on it, it caused some tissue death in my retina.
I am praying for direction from the Lord. Both medication options can be a no-win.
Sorry, I see that I've written another novel! Two subjects here included in this so my apologies and my thanks for your time in Reading this.
Thank you guys so much for what you do and I want you to know how much I appreciate it! You devote so much time and care so deeply for all of us and want you to know that really is heard!
I hope you guys have a good day, Victory where you need it, and blessings all around!
Sunnyflower 😊🙃
@johnbishop snd @colleenyoung, ooops, for yo say I struggle with double vision off and on throughout the day as well as other eye pics which make it more difficult to type the Mayo names mentioned at the top of the post I'm replying to. S