Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

@johnbishop

Hi @expat49, Have you found anything that helps? I know you mentioned earlier that you have had decompressions surgeries. Did that help?

I'm wondering if you might find the following information helpful.
-- Nerve Compression Syndrome: https://www.healthline.com/health/nerve-compression-syndrome
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/comment/247117/

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I have read everything on the subject. Things like myofascial release just aggravate my pain. I feel these mainstream sites are very generic and do not apply to many people with complex nerve conditions, even the Meralgia Paresthetica sites trivialize the life destroying pain this condition can cause and suggest things like physical therapy that are useless for this. It’s maddening and saddening.

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@bonniethompson1234

Ok. I’m taking back what o said about the vaccine not causing a problem. I’ve been on amoxicillin since last Friday as I have a full knee replacement and was having a CT Scan. Both my knees have become extreme stiff and painful. It’s like a ring of pain around both knees. I’m suspecting the amoxicillin as it’s the only thing different. So why couldn’t the vaccine do something similar. I’m defensive of the vaccine because I feel we all should have it. Sorry if I sounded like a know it all because I’m far from that. Apologies!

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After the second Moderna dose, I noticed that the joints in the middle fingers became slightly swollen and painful. No problem that occasional acetaminophen can help. Now just yesterday, a day after my Senior Influenza vaccine injection, I experienced joint pain in those fingers and seemingly like all my toe bones. After taking an extended release acetaminophen tablet, he foot pain and most of the finger joint pain gone. Since vaccines activate an immune response in the body, my virologist friend has suggested that it is possible.

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@mcd123

Whats the difference between OTC and compounded alpha liporic acid?

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@mcd123 OTC is over the counter or stuff you can buy at a drug store, etc.. Compounded means it's created by combining ingredients at a Compounding Pharmacy. A regular pharmacy provides commercial medications in standardized dosages, while a compounding pharmacy can customize medication based on a patient's specific needs.

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@miker8888

After the second Moderna dose, I noticed that the joints in the middle fingers became slightly swollen and painful. No problem that occasional acetaminophen can help. Now just yesterday, a day after my Senior Influenza vaccine injection, I experienced joint pain in those fingers and seemingly like all my toe bones. After taking an extended release acetaminophen tablet, he foot pain and most of the finger joint pain gone. Since vaccines activate an immune response in the body, my virologist friend has suggested that it is possible.

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First day after I’m off of the amoxicillin, the pain in my knees has subsided, thank goodness.

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@johnbishop

@mcd123 OTC is over the counter or stuff you can buy at a drug store, etc.. Compounded means it's created by combining ingredients at a Compounding Pharmacy. A regular pharmacy provides commercial medications in standardized dosages, while a compounding pharmacy can customize medication based on a patient's specific needs.

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My next question is who detetmines the dosages. If you have never taken the medication before how can you determine your own dosage.

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@mcd123

My next question is who detetmines the dosages. If you have never taken the medication before how can you determine your own dosage.

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My guess is a doctor has to provide the prescription but I have no experience with a compounding pharmacy/pharmacist

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@johnbishop

Hello @user_ch98d0b5c -- I read from your earlier post that you do not know what the cause is for your peripheral neuropathy. I also have idiopathic small fiber peripheral neuropathy. They suspect hereditary but don't know. You also mentioned you have an upcoming appointment at John Hopkins with Dr. Hoke in September. I know it must be frustrating waiting and wanting some answers.

@user_ch98d0b5c have you found anything that helps with the pain?

I've found that I always wear socks, even at night. I mainly do this because I can't tell if my feet have been injured when I step on something walking around the house. I've found that socks made with bamboo fiber are really soft, stretchy and very easy to put on and take off. I guess they probably wouldn't help you if you can only wear flip flops. Have you tried any kind of shoe that doesn't cause you pain?

I was not sure by the title of your discussion if you were trying to locate members who do not have diabetic neuropathy or that do have diabetic neuropathy?

John

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People who do not have diabetes

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@user_ch98d0b5c

People who do not have diabetes

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You might want to read through the different member posts in the Member Neuropathy Journey Stories: What's Yours? discussion here: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

I think most of the posts in the discussion are by members who do not have diabetic induced neuropathy.

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I started feeling numbness and minimal "pins and needles" with no pain in my feet about a year ago. My left leg also feels "heavy" as though carrying too much fluid but not swollen. A CT scan showed some spinal stenosis. Lately my symptoms have intensified with my feet feeling like cardboard, especially when lying and immobile and this morning, for the first time, I awoke to find a pulling sensation in the toes of the left leg and pain on the ball of that foot when walking. This is new. I have an EMG scheduled for this Wednesday. I am not diabetic but do have paroxysmal atrial fibrillation very well-controlled by medication and had a coronary ablation three months ago with results still to be determined. Could these conditions be related? Thank you.

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@willec49

I started feeling numbness and minimal "pins and needles" with no pain in my feet about a year ago. My left leg also feels "heavy" as though carrying too much fluid but not swollen. A CT scan showed some spinal stenosis. Lately my symptoms have intensified with my feet feeling like cardboard, especially when lying and immobile and this morning, for the first time, I awoke to find a pulling sensation in the toes of the left leg and pain on the ball of that foot when walking. This is new. I have an EMG scheduled for this Wednesday. I am not diabetic but do have paroxysmal atrial fibrillation very well-controlled by medication and had a coronary ablation three months ago with results still to be determined. Could these conditions be related? Thank you.

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Welcome @willec49, Neuropathy certainly has a lot of causes and the conditions could be related but I'm not sure anyone here can answer that question. You mentioned you have an EMG scheduled for Wednesday. It might be a question you can ask your doctor at a followup to the EMG when you get the results back. You mentioned being on medications. There are some medications that can induce peripheral neuropathy. The Foundation for Peripheral Neuropathy has a list here - https://www.foundationforpn.org/causes/other-drugs/ if you want to check and see if any you are taking are on the list.

Since you mentioned spinal stenosis, here is some information that may be relevant -- Spinal stenosis. A common cause of podiatric symptoms: https://pubmed.ncbi.nlm.nih.gov/9086718/
Do you think the new symptoms might be related to your spinal stenosis?

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