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.
@almighty
Congratulations!
You have great determination and willpower.
Wish I did!!!!!
What is hB1ac?
I know A1C, but not that.
Keep up the good work!!!
Ronnie (GRANDMAr)
I wish I would have known that you should always research your doctors before scheduling an appt. I was also jumping off the table. When they got down to the couple vertebrae in my lower back it hurt so bad I didn't even let them finish. I couldn't take any more pain! It's torture!
The pain depends on what kind of EMG you're having and what part of your body it's done on. Not all of them are painful.
@qball2019
Wow!
What did your doc say and do?
Ronnie (GRANDMAr)
@gojuman You might have a nerve entrapment caused by a misalignment of your pelvis, or by overly tight fascial tissue between the spine, legs and pelvis. A physical therapist trained in mypofascial release can help. Here's a link to the MFR discussion where you can find a lot of information and a provider search. Propping your leg up certainly can cause issues if there was a misalignment to begin with as it will pull on everything. You can work through this, so don't surrender to fear. You have an opportunity to participate in fixing this if this is a physical entrapment problem. I have had my arms go numb and had sciatic pain issues that were resolved with MFR. There is hope, so jump in and advocate for yourself. There is even a video in the discussion showing a relevant treatment of a pelvic issue.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
@grandmar
Did you mean when I couldn't finish the EMG or when my doctor ditched me?
Both
@grandmar
The doctor just stopped and then said what he did get done was all normal. Normal? I can't even stand up straight. Every time I try it lights up the T10-T12 area and the hot, burning pain travels downward.
These articles were in the latest Foundation for Peripheral Neuropathy's e-newsletter and I thought they would be of interest to the members in this discussion.
Coping with Peripheral Neuropathy - June 2019
-- https://www.foundationforpn.org/2019/06/06/coping-with-peripheral-neuropathy/?blm_aid=116106
Neuromodulation for Refractory Neuropathic Pain
-- https://www.foundationforpn.org/2019/06/10/neuromodulation-for-refractory-neuropathic-pain/?blm_aid=116106
Healthy Eating for Peripheral Neuropathy with Chef Bill Nolan
-- https://www.foundationforpn.org/2019/06/10/healthy-eating-for-peripheral-neuropathy-with-chef-bill-nolan/?blm_aid=116106
Studies to explore how myrcene, other cannabinoid-based ingredients can treat chronic-neuropathic pain
-- https://leaderpost.com/cannabis-health/studies-to-explore-how-myrcene-other-cannabinoid-based-ingredients-can-treat-chronic-neuropathic-pain/
Out-of-pocket costs for neurologic Cost of Meds medications rise sharply over 12 years
-- https://medicalxpress.com/news/2019-05-out-of-pocket-neurologic-medications-sharply-years.html
I think I'm in here somewhere but my diagnosis has changed and I don't know if I'm in the right group. I finally received a second opinion and unfortunately it's worse. I have Complex Regional Pain Syndrome CRPS. Nicknamed the suicide disease as the on the long scale it's 42 out of 50. I have read reports that attempts and success range at almost 70%. So far no favorable prognosis. Same deal Gabapentin and pain killers. I've been promised I would be kept comfortable but no one knows how to do that. I live 24 7 in my dark room because the light affects my head. Is there anyone in this group that has had this disease for over 2 years as I believe we would have more in common. After 2 years your not eligible for testing anymore because after 2 years there is no chance of a cure. You are too alive to be helped by dying with Dignity because I suffer with my hands 24 7 it feels like they are in boiling oil. Because I'm not eligible I have to suffer forever. When your reading and they say rarely children get this but they do and it's vicious on our little warriors. HELP