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.

Profile picture for kenc @kenc

I posted this as reply. However, figured others might be interested in the services of PM&R/Physiatrists.
Physical Medicine and Rehabilitation (PM&R) physicians, also known as physiatrists, treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons.

PM&R physicians are medical doctors who have completed training in the specialty of Physical Medicine and Rehabilitation (PM&R), and may be subspecialty certified in Brain Injury Medicine, Hospice and Palliative Medicine, Neuromuscular Medicine, Pain Medicine, Pediatric Rehabilitation Medicine, Spinal Cord Injury Medicine, and/or Sports Medicine.

Specifically, PM&R physicians:

Treat patients of all ages
Focus treatment on function
Have a broad medical expertise that allows them to treat disabling conditions throughout a person’s lifetime
Diagnose and treat pain as a result of an injury, illness, or disabling condition
Determine and lead a treatment/prevention plan
Lead a team of medical professionals, which may include physical therapists, occupational therapists, and physician extenders to optimize patient care
Work with other physicians, which may include primary care physicians, neurologists, orthopedic surgeons, and many others.
Treat the whole person, not just the problem area

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Thank you! I printed this out to use when I go for my appointment with my new physiatrist. They are also called pain management doctors. I have neck pain that has been ongoing since the end of May (join the club). I’m hoping he can help, but I’m going to PT first. PT worked for me when I had neck pain on my right side. I haven't had neck pain for almost 2 years. My rheumatologist told me the physiatrists use chiropractic, nerve blocks and shots. I’m glad I have now other things that might help.

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Profile picture for jetsetter @jetsetter

Thank you! I printed this out to use when I go for my appointment with my new physiatrist. They are also called pain management doctors. I have neck pain that has been ongoing since the end of May (join the club). I’m hoping he can help, but I’m going to PT first. PT worked for me when I had neck pain on my right side. I haven't had neck pain for almost 2 years. My rheumatologist told me the physiatrists use chiropractic, nerve blocks and shots. I’m glad I have now other things that might help.

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You are welcome. Glad I could help.

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Profile picture for bustrbrwn22 @bustrbrwn22

This is very helpful, I always wondered (and must have been too lazy to look up) what their role was. Opening this up to everyone on the site, how have your experiences been with a physiatrist? Are they hard to find or are they scheduled so far out it's impossible to see them in a reasonable amount of time?

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Had no problem scheduling an appointment in about a week and follow up in about 3 weeks later. Needed a referral though. My neurologist was kind enough to do so. So far my experience is very positive. He is now reviewing all the scans, etc. for possible damage, and sources of the pain, etc.

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Profile picture for bustrbrwn22 @bustrbrwn22

You are lucky to have a choice. Cannabis is still illegal in Wisconsin.

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You aren’t far from Illinois or Michigan.

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Yes, that’s a point, it’s illegal where I live as well. Old folks arrested for eating pot gummies?

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Profile picture for jetsetter @jetsetter

I wish there was more info on usage of cannabis for pain. It really helps me, but it would be helpful if they started sharing some research results. I think until recently, it couldn't be used to research because it is still illegal federally. I'm sure someone is looking into it! I am sure there are probably side effects that we don't know about.

So what kind of doses and what form are you given when you go the medical cannabis route?

Maybe we will hear from some suffering people who have more info on using cannabis.

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I had a consultation with the pharmacist at the medical dispensary. He was knowledgeable about which strains, strengths would be helpful for pain, insomnia. It’s kinda trial and error. Start low , you can always increase a little at a time. It’s hard to figure out in Ct. because they don’t use the true name of the product so you have to cross reference the dispensary name online.

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Hello @greenacres
I'm having a more difficult time sleeping than my usual insomnia.
I thought I would check in and see how your husband and you are doing. Your expression of gratitude for some simple strategies was very gracious and gratifying.
I have a follow-up appointment with a neurologist in October. He'll probably attribute my symptoms as poly pharmaceutical in nature. I don't have much confidence in the new doctor, so I'll go to my journal and write my questions, comments and concerns.

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Profile picture for jetsetter @jetsetter

Yes, that’s a point, it’s illegal where I live as well. Old folks arrested for eating pot gummies?

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What happens if my pain doctor takes a urine sample and finds cannabis? They would drop me as a patient

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Profile picture for kenc @kenc

Had no problem scheduling an appointment in about a week and follow up in about 3 weeks later. Needed a referral though. My neurologist was kind enough to do so. So far my experience is very positive. He is now reviewing all the scans, etc. for possible damage, and sources of the pain, etc.

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That sounds awesome. Please keep us posted7!

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Profile picture for luann262 @luann262

Hi Cathy-
I can't believe I reaad this! I have a toe on my left foot that starts to fire up in the afternoon and is like an ice pick stabbing pain. Up all night and nothing helps. Now this week I have 2 toes on my right foot doing it- I want to amputate them! FYI- I have had ideopathic bilateral neuropathy in both feet for about 10 years. I take 3300 mg gabapentin, cymbalta and klonopin ( 1 mg at night ) . Nothing helps with the toes. Luann

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Hi Luann...im glad I'm not finally losing it!!! I have thought of cutting my toes off many times!!! Never experienced pain like it. I have had neuropathy for many years but just numbness for years. Over the past several years pain and burning has entered the picture. I am taking Gabapentin 1800mg daily. Many years on tramadol,but my pain doctor has decided I need to come off of that. I have been weaning myself off and of course the neuropathy pain has increased greatly. I also take klonopin .5 mg Which I am also wanting to stop. I am trying many things. Right now have found a little relief with voltaren cream and cbd cream,on my toes and burning areas. Also using ibuprofen and Tylenol. The pain,has altered my life...not for the best to say the least. It is so difficult to know what to do. My neurologist want me to start Cymbalta ...my thoughts are why bother If It won't help me. I live in the flirida panhandle and have toyed with the idea of going to the mayo clinic in Jacksonville. Let's stay in touch ..it us so good to share information. Cathy

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