Living with Neuropathy - Welcome to the group

Hello @clarer3aney, welcome to Connect. I'm happy you found us. I am not aware of any neuropathy support groups in Dublin or in Ireland but hopefully one of our members can provide some information. Another closed Facebook group I belong to is Solutions to Peripheral Neuropathy Pain & Discomfort. They have over 8,000 members and I know they have members in the UK and possibly Ireland. They have a website if you want more information. The website has a link to join their Facebook group - http://solutions2pnpd.com/

I did find a Peripheral Neuropathy Community link for the UK that might be helpful for you.
-- https://www.nhs.uk/Conditions/Peripheral-neuropathy/Pages/community.aspx

There is another discussion here on Connect you may be interested in reading through:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
-- https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

You mentioned you have chronic fatigue. Have you seen a doctor or specialist about the chronic fatigue?

John

Thanks John for your response. Ye I'm attending my doctor as well as spinal team so all avenues being investigated. Thanks for the links. I will have a browse. Thanks so much

Clare

@nicoletta8 A functional medicine doctor looks at things differently. They look at the chemical processes in your body and try to prevent problems at that level by figuring out if something is out of balance. The prescriptions can also change all that and possibly that doesn't work well for you. We are all different in what works medically. You could have some kind of vitamin or mineral deficiency leading to symptoms. A big factor is inflammation, and they look for causes and try to prevent them. that might include allergy shots or hormone balancing. If you are a person with gluten intolerance or celiac disease, that can cause tingling in your extremities and it is an autoimmune reaction to a compound in wheat and other grains. They are so pervasive in foods that you might not even know they are there, yet your body reacts. I have been seeing this type of doctor for years, and it has helped my health a lot. If I had only been seen by conventional doctors who treat symptoms, I'd be on a lot of prescriptions, but instead, I've been preventing the issues and avoiding unnecessary medicines. I have a lot of food allergies in addition to gluten and environmental things. My doc is an environmental allergist and functional medicine guy. His approach is also different on hypothyroidism and he does not base it on average readings as normal, but on what it does in the body. That makes a big difference. Grief could be part of things for you, but normal tests are good news. Just remember that they don't tell the entire story. I think a functional medicine doctor is a good one for you. Autoimmune problems can come from toxicities. For example, my old silver amalgam dental fillings caused my hashimoto's thyroid problem (autoimmune) and I had them all replaced. I know it's hard to go on without a diagnosis, but that might happen in small steps, and it may take multiple doctors to figure it out. At 46, you might also have some peri-menopausal symptoms and that does affect memory for some women. You can get bio-identical compounded hormone replacement, if that is what is causing your symptoms. A functional med doctor can assess that too. Those hormonal changes do cause anxiety for some people and up and down emotions. Do whatever you need to grieve so you can get past that. It's different for everyone, and so important. It's OK to have those feelings, and do reach out when you need to. I suggest keeping a journal to write down your feelings so you can process it, and a psychologist can be a big help.

I'm having a hard time getting the medicine in Delaware and Virginia. Politicians have put Lyrica on the 'controlled substance' list which doesn't make any sense. We have to write to our elected representatives before they legislate us dead. Peggy

HI, I'm Carrie . I was diagnosed with CIDP and Small Fiber Neuropathy about 2 1/2 years ago. My Lyme doctor said these autoimmune diseases are the result of chronic Lyme. I am in severe pain from the SFN, experiencing tingling, numbness in my extremities. I have IVIG 2 days a month yet am worsening with more muscle weakness and balance issues. My neurologist is out of state and decided to eliminate home infusions and infuse her patients at her office only. Since she's 4 hours away, I'm in the process of finding another neurologist expert in CIDP in MA or CT. Any suggestions?

I, too, have tried CBD and THC. My best results have been with CBD and THC ointment for nighttime to ease my insomnia and 250 CBD during the day. Of course, the CBD ointment needs to be reapplied a couple of times during the day. Tinctures haven't worked for me nor have edibles; these are unpredictable.

Hi Carrie @sherlock, welcome to Mayo Clinic Connect. I have small fiber PN but I only have the numbness and no pain. Thank you for sharing your post. There are a couple of discussions that you may want to read and connect with other members that share your symptoms.

Groups > Neuropathy > Anyone been diagnosed with CIDP? It's very rare
-- https://connect.mayoclinic.org/discussion/has-anyone-on-this-feed-been-diagnosed-with-cidp-its-very-rare/
Groups > Neuropathy > Small Fiber Neuropathy
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/

You mentioned that your condition continues to worsen even with the IVIG treatments? Did your neurologist offer any other treatment suggestions?

I'm tagging @artscaping and @jenniferhunter who have discussed chronic pain in previous posts to see if they are able to share any suggestions for you.

John

@sherlock I was looking up CIPD and ran across this link that talks about treatment and studies. Here is the link https://rarediseases.org/rare-diseases/chronic-inflammatory-demyelinating-polyneuropathy/ I wonder if regenerational medicine could help. That's just a guess as I don't know. With autoimmune issues, sometimes detoxing can help by removing something that your body is reacting to, but that would be a question for a functional medicine doctor. The environmental/functional medicine doctor who defined the field was Dr. Rea and here are his volumes written for doctors about what happens chemically within the body in chronic diseases. https://www.ehcd.com/reversibility-of-chronic-degenerative-disease-and-hypersensitivity/ You can also go to Dallas for treatment. This was information that I got from my environmental medicine doctor. I hope your Lyme disease is in remission and not actively attacking your body. I know oxygen levels in the body aid healing and help defeat some of the infections and boosting that may help. If you are not able to exercise to raise your levels, how about something like hyperbaric oxygen chambers, or using an oxygen concentration device? I'm not a doctor, but these would be questions you could ask about.

Hi Colleen! This is my 1st post and I just have questions about neuropathy diagnosis! I am going to my podiatrist to be evaluated for neuropathy and wanted to know what neuropathy group would be best for me to ask questions?
Thank you!
Janet Clendenin

Hello Janet @jana59, welcome to Mayo Clinic Connect. I have small fiber peripheral neuropathy but it was diagnosed by a neurologist after a few tests and an exam. I have no medical background or training but I don't think a podiatrist has the ability to diagnose neuropathy. He can probably guess and tell you he thinks you have neuropathy but without specific tests like a punch biopsy or an Electromyography (EMG) I don't think he can provide a diagnosis. My question to the podiatrist would probably be the same question I asked my primary care doctor when my feet/toes started being tingly and numb. He told me it's probably nerve damage and I asked him how do you know? He said we can run some tests and I said if you run the tests and you determine it's nerve damage what can you do to fix it. He said nothing. That was 20+ years ago and so I let it go until a couple of years ago when I decided I wanted to know specifically what the diagnosis was. That's when my primary care doctor setup an appointment with a neurologist.

Here's an article on diagnosing Peripheral Neuropathy:
-- http://www.todaysgeriatricmedicine.com/archive/070912p14.shtml

Here's an easy to understand explanation of small fiber peripheral neuropathy by Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin: https://youtu.be/8nrv7lRvvwU

Janet are you able to share a little more about your neuropathy symptoms?

John

Thank you. I have been enjoying the posts and positive feedback. There's so much to learn about CIDp and small fiber neuropathy.