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?

@johnbishop

Hi Fred @goetf4997, I have no experience or knowledge of Prolotherapy but did find a few links that may provide a little more information.

Platelet-rich plasma and the elimination of neuropathic pain.
https://www.ncbi.nlm.nih.gov/pubmed/23832571

Sugar Coated Nerves: The Pseudo-Science of Neural Prolotherapy
http://nationalpainreport.com/sugar-coated-nerves-pseudo-science-neural-prolotherapy-8822875.html

Mayo Clinic — Is prolotherapy an effective treatment for chronic low back pain?
https://www.mayoclinic.org/prolotherapy/expert-answers/faq-20058347

There has been some success with Platelet Rich Plama (PRP) but I'm not sure about neuropathic pain. Mayo Clinic Regenerative Medicine has some information here:
https://www.mayo.edu/research/centers-programs/center-regenerative-medicine

Hope this helps…
John

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Thank you for these resources … they might save some of us from wasting time and money. Sometimes I just can't believe what the FDA lets manufacturers get away with (like 'super-foods', 'cures' and 'anti-aging' products that are nothing more than some cheap B vitamins and herbs grinded up and stuffed into capsules). Peggy

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My name is Nikki, I'm 46 years old and I was recently diagnosed with idiopathic peripheral neuropathy with symptoms of numbness and burning pain in both feet. In February of 2018, it started with a little numbness at the base of a couple toes and has since spread to constant numbness in both feet. My primary care physician was as thorough as he could be (blood tests, EMG, etc.) and because I have multiple autoimmune diseases (vitiligo, IBS, eczema & hypothyroidism), he ruled out MS, Lupus along with Lyme disease, diabetes and probably other diseases which I just can't remember He prescribed Neurontin, starting at 300mg 3 times a day with the goal of 900mg 3 times a day but the side effects (fuzzy brain & blurry vision being the worst) were too much so I topped out at 600mg three times a day. I was also prescribed Elavil (75mg) to take at bedtime to help me sleep better. There was no relief, no change in my symptoms with that medicine, so he then referred me to the Cleveland Clinic where I met with a neurologist in October of 2018. He ordered many blood tests, an EMG, a skin biopsy, a vascular ultrasound and I had an appointment with an endocrinologist to make sure my hypothyroidism was not the cause. He also started me on Lyrica with the end goal being cutting out the Neurontin entirely due to the debilitating side effects and having Lyrica take over. All tests came back normal so now they want to refer me to a "functional medicine doctor". This whole situation has been physically and mentally draining. I have been a stay at home mom for almost 11 years but had recently gotten back into the workforce with a legitimate work from home position which made me so happy. However, I lost that job because I can't retain new information and I can't seem to think straight anymore. It's almost like my brain is misfiring where I know I should know how to do something but my brain is just not getting there. I will be honest…..I have become extremely depressed (not suicidal) since learning all the tests from the Cleveland Clinic came back normal. My symptoms have continued to worsen with no clear diagnosis. This Tuesday, I am going to see a psychologist who helped me deal with my grief when both my parents passed away from cancer back in 2005 and 2007. I'm sure this is all way too much information but I wanted to paint as clear a picture as possible. I really need to chat with and learn from others who are suffering from the same issues as I am.

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Hello Nikki @nicoletta8, welcome to Connect. I also have idiopathic small fiber peripheral neuropathy but I only have the numbness and tingling. I don't have any real pain with mine. I take some over the counter supplements – vitamins and minerals that help with my symptoms but may or may not work for you. You can read my story in an earlier post on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

There is another active discussion that may be helpful for you to read through and meet others who may have some of the same symptoms.

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

Nikki it sounds like you certainly have a lot going on and I'm sure it's not easy dealing with everything while being a mom and trying to work from home. Are you able to share a little more about the symptoms you are trying to get diagnosed? Is it the cause for the numbness and burning pain in the feet?

John

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Nikki you have done very good in getting all the testing done and going to a specialist. I among many others are idiopathic with neuropathy. It is a lot to take in so it is not surprising that you have depression. I see you are going to see a psychologist. You are doing all the right things so feel good about how you are handling all this.

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Hi

I am wondering if you are aware of any nueropathy support groups in Dublin or anywhere in ireland.

I have nerve damage as a result of broken disk, nerve compression, followed by epidurals and finally surgery. I have drop foot, weak left hip & leg, burning in leg which intensifies at night. I suffer back ache as a result of back muscles over working. Chronic fatique is a big problem. Prior to this I was very sporty, cycled, walked, mountain climbed so very frustrated. I can do static gym work and have recently started swimming which is a great help and certainly helps me mentally. I wear a foot brace, use a nerve stimulator and walking stick as required. 16 months on, I have come a long way but can't seem to be able to build strength/stamina to return to work. My consultant had said if nerve has not recovered in 18 months (16 months since surgery,) it will not recover.

Regards
Clare

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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

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@johnbishop

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

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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

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@nicoletta8

My name is Nikki, I'm 46 years old and I was recently diagnosed with idiopathic peripheral neuropathy with symptoms of numbness and burning pain in both feet. In February of 2018, it started with a little numbness at the base of a couple toes and has since spread to constant numbness in both feet. My primary care physician was as thorough as he could be (blood tests, EMG, etc.) and because I have multiple autoimmune diseases (vitiligo, IBS, eczema & hypothyroidism), he ruled out MS, Lupus along with Lyme disease, diabetes and probably other diseases which I just can't remember He prescribed Neurontin, starting at 300mg 3 times a day with the goal of 900mg 3 times a day but the side effects (fuzzy brain & blurry vision being the worst) were too much so I topped out at 600mg three times a day. I was also prescribed Elavil (75mg) to take at bedtime to help me sleep better. There was no relief, no change in my symptoms with that medicine, so he then referred me to the Cleveland Clinic where I met with a neurologist in October of 2018. He ordered many blood tests, an EMG, a skin biopsy, a vascular ultrasound and I had an appointment with an endocrinologist to make sure my hypothyroidism was not the cause. He also started me on Lyrica with the end goal being cutting out the Neurontin entirely due to the debilitating side effects and having Lyrica take over. All tests came back normal so now they want to refer me to a "functional medicine doctor". This whole situation has been physically and mentally draining. I have been a stay at home mom for almost 11 years but had recently gotten back into the workforce with a legitimate work from home position which made me so happy. However, I lost that job because I can't retain new information and I can't seem to think straight anymore. It's almost like my brain is misfiring where I know I should know how to do something but my brain is just not getting there. I will be honest…..I have become extremely depressed (not suicidal) since learning all the tests from the Cleveland Clinic came back normal. My symptoms have continued to worsen with no clear diagnosis. This Tuesday, I am going to see a psychologist who helped me deal with my grief when both my parents passed away from cancer back in 2005 and 2007. I'm sure this is all way too much information but I wanted to paint as clear a picture as possible. I really need to chat with and learn from others who are suffering from the same issues as I am.

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@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.

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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

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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.

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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

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@johnbishop

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

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@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.

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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

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@jana59

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

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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

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

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