Just Introducing Myself

Hi. I’m Debbi, 62 years old. My EM is secondary to diabetic neuropathy. I’ve tried most of the pain killers, anti-depressives and anti-seizure drugs with no relief at all. Some of them made me sleep through the night, but the side effects weren’t worth that little blessing. I’ve also had two paravertebral sympathetic blocker injections, neither of which helped in the slightest, although the second one DID introduce me to the joys of sciatica! Most recently, I had a neuro-stimulator implanted in my spine. I get maybe 10% relief from that colossal waste of pain and money.

My pain doctor wants to put things in my body, my neurologist wants to give me every kind of medicine out there, my endocrinologist ignores me… However, my pain doc decided I should go to the Cleveland Clinic, so I will head there in June. I don’t know what they can do for me, but it would be really nice to get some kind of relief. My vascular doctor is the one who finally diagnosed me. He said my veins and arteries are just fine, and my feet could be in a textbook for EM!

My story starts with an autoimmune condition called Polymyalgia Rheumatica. It’s similar to rheumatoid arthritis, but has a different inflammation and usually only affects the shoulders, neck, and sometimes hips. PMR is highly sensitive to cortisone, but the cure is cortisone, so they start you out on a fairly high dose until the pain is gone, then veeeerrrrry slowly, come down until you’re either at a small dose or off it altogether. It is a well known side effect of cortisone that it elevates your blood sugar, but the docs just kept telling me it would go back down after I came off the cortisone. Well, it never did, so now I am diabetic. The neuropathy started one year later and was bearable until I had both of my knees replaced. Then, it got exponentially worse! I also had cervical fusion 3 months after the bilateral knee replacement.

I guess I’m lucky in that it is only my feet so far, but I used to be a runner, even marathons, and now I can barely walk. It is very depressing…

Hi Debbi. So sorry for your woes. It is a nasty disease I have em as a result of small fiber neuropathy and was diagnosed with poly neuropathy. No cause although I have 2 autoimmune diseases. I am improving with the help of a functional medicine chiropractor. He is addressing root cause. I also use a nerve rebuilder device, get laser treatments and started a beta blocker whic is controlling flares. I am getting incrementally better with discipline use of these tools, diet and supplements. So, there is hope. I’m headed to Hopkins in June but Cleveland clinic is terrific. And you have functional medicine specialist dr mark Hyman there. Good luck.

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Oh, Debbi! You’ve been through a lot! I hope this community is able to help you on your journey. You’ve tried a lot of treatments, probably more than most who find their way here. Have your doctors tried a sodium channel blocker yet?

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I never heard of them before! I think I will ask my neurologist about them.

Well, little did I know, I have had a sodium channel blocker — Tegretol. It is the most recent prescription I was given, and I think maybe I didn’t give it a fair shot. I slept well the first two nights, but after that, I was up 2-3 times per night, putting my feet in cold water again. I’d better give it another try…

My neurologist says I have classic small fiber nerve damage. He says there’s nothing to be done except to try to control the pain. He says there are still more drugs to try, although it seems like I’ve already had plenty with little success. I gained 11 pounds in 10 weeks on Lyrica; I walked with a definite “list to the left” when I was on Gabapentin; I slept an average of 15 hours a day on Cymbalta; Nucynta puts me in a sort of waking dream where my hands weirdly do whatever I’m dreaming. Some gave me tremors, headaches, myclonus, runny nose, cough… Mostly, I hate taking meds just for the side effects!

My Dad is 91, and healthier than I am, but when he goes, I won’t be far behind. I think it would kill him if I died before him, so I will “endeavor to persevere” in the immortal words of Chief Dan George in “Little Big Man”! I always hoped to live long enough to see grandchildren, but now, even that isn’t enough to make me want to keep hanging on. My oldest son just got married a week ago, and my youngest a year and a half ago, but neither of them plan on having children soon.

Just to let everyone know, the sodium channel blocker is actually giving me some relief! It’s almost a miracle. The pain and swelling isn’t completely gone, but if I stay in my cool house, life is almost bearable again. I still turn the thermostat down to 62F at night, never above 65F in winter and 68F in summer, sleep with my feet outside the covers, have an evaporative air conditioner blowing on my feet at night, have the ceiling fan on, and use the cold water frequently, but I am better than I was. Before, I had my feet in the cold water so much, my skin deteriorated and cracked where my toes bend, so now I use plastic bags.

I can’t sleep with the Tegretol, so I also take Lunesta now. Oh, and I also added aspirin.

A day or two after I started the Tegretol, I went through a few days of intense itching, but thankfully, it didn’t last.

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Excellent! It’s always encouraging to hear stories of progress. I’m excited the sodium channel blocker is providing you some relief! A lidocaine infusion is another option that has been reported to be helpful for some patients. I’ve not had one, but it is sometimes combined with the drug I do take, mexiletine. Both lidocaine and mexiletine are sodium channel blockers, class Ib antiarrhythmic agents that shorten the action potential for cardiac sodium channels. While I don’t know if a lidocaine infusion can be combined with tegretol, or if there are contraindications that would preclude you from having one, it’s worth asking your doctor about considering your success with tegretol.

Stay cool!

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