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5 days ago · Living with Neuropathy - Welcome to the group in Neuropathy

Correction to my post Feb 4. I developed sciatic in 2016.

5 days ago · Living with Neuropathy - Welcome to the group in Neuropathy

Dear judypall,

I truly understand what you are experiencing.

1) yes, the pain, tingling, etc. drives everyone crazy, at least me and those I have talked with.

2) There are many many unknowns in neurology, and most of what IS known has been identified in the past 20 years. We all want definitive diagnosis and a cure, believe me. In my experience neurologists are not withholding either diagnosis or cure. They just do to know in so many cases.

3) I believe neuropathy can improve if there is a cause that is identified and eliminated. These include Neuropathy caused by spinal nerve compression, diabetic neuropathy, alcohol induced neuropathy, and perhaps chemotherapy induced neuropathy. I believe there can be significant recovery when the cause is eliminated.

4) With a chronic condition like SFN, eventually we become accustomed to the 'new normal'l, while continuing to seek innovative treatments and diagnosis. 'Doomed' may be how we feel on our worst days. I recommend the book, How to Be Sick, by Toni Bernhard, who outlines strategies for living with chronic illness and pain.

5) What works for me?

Gabapentin (RX) (anti-seizure) to mostly stop the SFN in my skin, which makes it feel like it is on fire. Even my eye lids, lips and tongue are affected.

I take Wellbutrin (RX), an anti-depressant because I suffer from an inflammatory condition. Inflammation causes fatigue, pain, and depression.

I take Low Dose Naltrexone (RX) which is a new use of a drug that has been around. It help with pain I cannot take Codeine type drugs, or NSAIDS.

I take Methylprednisolone (RX) to combat my inflammation, as needed.

I recommend that people with chronic conditions seek consultation at a University Medical Center. My care is managed by Duke University Medical Center Physicians.

Meditation, relaxation, and mild exercise (preferable in warm water) go a long way to making life bearable.

I also see a counselor weekly, to share my concerns. Chronic illness affects our entire life, and the lives of those around us.
In therapy I examine my thoughts and feelings with a professional. I consider this an essential part of my life.

Judy, you are new, and I've been doing chronic conditions since 2002, but also had chronic severe eczema as child, so I've dealt with "the new normal' a long time My neuropathy is caused by an Immune Disorder, and has progressed significantly in the past 15 years. '

However, I think that people people with neuropathy experience everything from 'cure', to a stabilized condition, to progression.

Here you will read personal stories, and it helps to know you aren't alone.

Best wishes, ElaineD

Tue, Mar 12 8:01am · Mitigating Pain in Neuropathy

Hi Peggy, I'm sorry you are in so much pain. One theory why the rubbing and activity of the jacuzzi help with pain is that both activities have the effect of adding stimulation of the area where you have nerves causing pain. When there is pressure over the area with pain, you are creating a sensation that 'distracts' from the neuropathic pain.

Rather like when you instinctively rub the part of your body that you hurt it. Like a thumb that you hit with a hammer. Or a knee you fall on.

The use of medical marijuana is much more 'controlled' than it was when you tried pot and hash 'back in the day'. We don't have legal medical marijuana here in NC (probably eventually will but not any time soon), so I don't know from first-hand experience.

If MM is available to you, you should find a pain specialist to prescribe and manage your treatment.

Many people post on other forums that MM is very helpful with their pain. It probably distracts the perception of pain in your brain, which is why it works. Just my idea. Here's scientific review. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5549367/

Regards, ElaineD

Mon, Mar 11 9:57am · Living with Neuropathy - Welcome to the group in Neuropathy

I developed myoclonus and syncope as a side effect of Cymbalta (duloxetine). It is a rare side effect, and I didn't develop it until after I had taken Cymbalta for SIX YEARS. It took 18 months before we figured out the culprit was Cymbalta.

The key is to check your meds for RARE SIDE EFFECTS on webmd or a similar site.

I had every test in the book, and saw a specialist in epilepsy (ruled out immediately), I even insisted on an MRI of my brain.

But it was the Cymbalta and then it turned out I couldn't take ANY SSRI or SNRI without myoclonus and syncope.

And I had taken Prozac beginning in 1988, and other similar drugs for almost 30 years before the problem began in 2016.

Best wishes in finding out what causing your syncope, elizabj.

Regards, ElaineD

Mon, Mar 11 9:37am · Five Things I Wish I’d Known Before My Chronic Illness in Neuropathy

"Coming to terms with limitations" is a biggie! And if pain is part of the picture, I think it's worse.

I call this 'the new me'. Coming to terms with the 'new me' is vital. I have to come to terms with my grief and anger before I can accept 'the new me'.

Acceptance of the 'new me' doesn't mean giving up on the search for help and relief, however.

And I have had to 'come to terms with the new me' more than once, as my neuropathies have progressed and also include more parts of my body

So now I have' the new NEW ME'. A sense of humor is vital.

I recommend the book "How to Be Sick" by Toni Bernhard. Ms. Bernhard was a successful attorney teaching at a law school in CA, when she became mysteriously and permanently disabled. Her book has given me consolation and TOOLS for dealing with all aspects of life with 'the new me'.

Regards, ElaineD@

Sun, Mar 10 8:47am · Idiopathic neuropathy and dizziness. in Neuropathy

Autonomic Neuropathy/Dysfunction can cause dizziness, judypall.


Regards, elained

Sat, Mar 9 9:26am · Living with Neuropathy - Welcome to the group in Neuropathy

Hi steeldove,

I did look into hand controls for driving when my neuropathy required me to wear braces. The braces prevent foot drop, but have a steel plate under both feet. So I really can't bend my foot enough for the brakes.

THEN for about 18 months I had a condition that caused me to suddenly fall to the ground (syncope). That's when I had to stop driving. The condition was caused by a side effect of a drug I had taken for 6 years. I stopped taking the drug and I stopped collapsing. But I haven't gone back to driving because by now I need a walker, and would have to manage getting the walker in and out of the trunk. By then I would be exhausted!

Very few people have the level of disability that I have, thank goodness.

Regards, Elained

Thu, Mar 7 7:40am · Living with Neuropathy - Welcome to the group in Neuropathy

Dear Ronnie,

If your neuropathy is caused by damage to your nerves in your spine, your neurosurgeon/orthopedic surgeon will have some idea if your neuropathy can possibly be improved through more surgery.

I am now 77. My neuropathy (profound and disabling) is not caused by nerve damage in my spine. I did have a compressed nerve in 2016, and the pain was terrible (sciatic type pain down my right leg). A laminectomy on L3/4 completely and immediately stopped the pain, thank goodness.

CAUSE: According to my Immunologist, my neuropathy is caused by my Immune System attacking and damaging my nerves. The irony is that my Immune System is deficient and cannot protect me, adequately, from infection. I have IVIG every four weeks to make my immune system stronger so that I am no longer constantly sick with viral, bacterial and fungal infections.. I'm very grateful for that.

1. Driving. When I asked my neurologist, he said that is my decision, not his! I now wear braces on both legs, and can no longer drive. That is one of the worst losses I've experienced so far.

2 and 3. From my research it seems that most neuropathies cannot be stopped, cured or reversed. The exceptions occur when the neuropathy has a very specific cause that is identified early and then the cause can be eliminated. Early diagnosis is important because usually nerves that are damaged cannot be repaired.

4 and 5. My neuropathy began long before it was diagnosed in 2010. I was stumbling, tiring easily, unable to take long walks, unable to ride a bicycle, and experiencing leg cramping and tingling feet. But I was dealing with so many OTHER health issues that I thought the problems I listed above were just due to being 'out of shape'. By 2010 I had profound neuropathy from my knees down. MY LIMITATIONS: I have 20% of normal physical abilities. I wear leg braces (2016) and walk with a walker (2017.

6. I've had PT 3 times for my legs. It doesn't help, I'm sad to say.

7. Because my neuropathy is profound, the nerves no longer function at all. So I don't have pain in my legs. However, I also have small fiber neuropathy in my skin, which hurts, burns and stings. Even my face, lips, tongue and eyes lids are affected. I take 4200 mg of Gabapentin daily to control that pain.

8. My neuropathy progressed quickly, I think. It started in my legs around 2002 at the same time I had nerve damage to the system that supplies saliva and tears. I take a medication to give me some saliva and tears. I have nerve damage to my bladder (2006) which has no real treatment, skin (2015) for which I take gabapentin, and the latest diagnosis is gastrointestinal neuropathy affecting my esophagus (dysmotility and achalasia) and my small intestine which causes SIBO, small intestine bacterial overgrowth. Achalasia (failure of the valve at the bottom of the esophagus to open properly) is treated with outpatient surgery (which will have to be repeated since) and SIBO is treated with antibiotics and which will return eventually and have to be treated again.

9. Surgery will not help my neuropathy since the nerves are damaged by my Immune System.

My case is an extreme example of immune mediated neuropathy. However about 30% of people with autoimmune/immune disorders have some form of neuropathy.

Hope this helps.

Regards, ElaineD