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Spreading Sensory Peripheral Neuropathy - What next?

Neuropathy | Last Active: Jun 11, 2022 | Replies (21)

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@artscaping

Good morning @julbpat, what a wonderful introduction. Doesn't your acceptance of SFN and all its symptoms and conditions relieve you from the frustration and ongoing disappointment that comes when you learn that there really is no cure? I am sure many Connect members will learn from you as well as be willing to share their concerns and accomplishments.

Thanks for sharing your commitment to activities that help maintain your health and well-being. I just finished my Yoga/stretch class which I have attended for years. Are you doing any stretching before your exercise routine?

Would you be open to sharing the medications that you take to "minimize your suffering"?

May you be free of suffering and the causes of suffering.
Chris

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Replies to "Good morning @julbpat, what a wonderful introduction. Doesn't your acceptance of SFN and all its symptoms..."

Yes, I do stretching, actually throughout the day. I'm terrible at keeping a routine. My chiropractor scolds me about this ! I see him every two weeks, and he does some wonderful stretching, focusing on whatever part is hurting me the most that week. I also am going to Pool Therapy every week right now - (until insurance stops paying!)and do Watsu therapy in the warm water. However these therapies are expensive and time-consuming, and unfortunately the results do not last even 24 hours. I have tried all kinds of therapy, and paid lots of money for massages!
My medications are Lyrica 75 mg 3-4 times per day. Gabapentin did not work for me after a while, and made me so sleepy. I'm starting to see the same effects after 5 months on Lyrica, steadily increasing my dose. I see a pain doctor, and have been taking 10 mg of Percocet per day for many years now. Baclofen surprisingly helps, especially towards the end of the day. And Ambien is essential. As you can see, I have several controlled substances, and things that don't mix well, and make my doctors uncomfortable. But I think by now they trust my judgement. I only take what I need, and am always compliant, and show that I am trying my best to live a good life. I never dreamed I would end up on so many medications, and I still have pain almost all of the time. The medications just tone it down.

Also, my length-dependent small fiber polyneuropathy is fairly recent. I had skin biopsies done in March that confirmed this. I am fortunate to live in a city with a renowned bioengineering firm. I was just accepted by Hudson-Alpha as a patient in their Clinic for Genomic medicine. I will have a neuropathy panel performed (actually going to the lab tomorrow) to determine if this is hereditary. I'm fairly certain that it is, as several family members have the same condition. This makes a lot more sense than fibromyalgia (although I probably have that too) and makes it easier to accept this, and decide how I am going to live well even with pain and fatigue!