Dear jordchud62, Wellbutrin and weekly therapy/counseling help me a great deal.
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Sun, Mar 31 4:51am · Have You Made Any Kind of Peace With Having Your Neuropathy? in Neuropathy
I have profound neuropathy, and must wear leg braces and walk with walker. I have constant pain from severe degenerative disk disease (arthritis of the neck).
I recommend "How to Be Sick' by Toni Bernhard. It is a guide to acceptance and joy: learning to live with chronic conditions and pain.
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
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/
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.
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'.