Neuropathy symptoms are worse when I sit or lay down: Anyone else?

Posted by pitepalten @pitepalten, Nov 26, 2021

My problems are worse when I sit or lay down. I now work standing and limit sitting or laying watching tv. When I wake up my arms have fallen asleep. This started 3 months ago and the discomfort is all over but worse in my arms, legs and back. I have had all the tests but no one can find anything. I also have a rash on my neck. It has been there for a week. Doesn’t itch. My dr prescribed 30mg Zymbalta. I take it prior to going to bed. Anyone have similar symptoms?

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@jakedduck1

@preknight
Good morning,
Considering your dose have you noticed Lyrica/pregabalin ever causing you any drowsiness during the day?
Jake

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Good morning to you. I do not have drowsiness with pregabalin. But I did have drowsiness when I took gabapentin.
Everyone is different.

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@crustycat

I find that sitting still and lying down cause my SFN symptoms to worsen. Mine is from above knee to feet, shoulders to hands and even over my scalp and face. My symptoms are mostly like sunburn and some loss of sensation. I take pregabalin 100 mg three times daily and Oxcarbazine 150 mg three times daily. I am T2D and the doctors suspect that as the root cause. I moderate carbohydrate intake for the most part but have found that if I indulge and let my glucose levels get high, i.e., over 180 then my SFN symptoms seem to flare quite a bit. I haven't found anything on the Internet or a doctor to confirm this, but it does seem to be true for me. I have read that the medical community is finding that SFN is showing up in patients that are pre-diabetic. So, even if you are not currently diagnosed diabetic does not mean that that is a contributing factor.

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I am prediabetic and have had neuropathy for 20-25 years. Symptoms are getting worse as time goes by. Haven't been able to drive a car for approx. 11 years.

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@preknight

I am prediabetic and have had neuropathy for 20-25 years. Symptoms are getting worse as time goes by. Haven't been able to drive a car for approx. 11 years.

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Very sorry to hear of this @preknight. Neuropathy is a difficult issue to treat. I was diagnosed T2D 20 years ago and regrettably did not take it serious (not saying this is your case). I wish I had managed my diet, specifically carb intake, to mitigate some of the neuropathic symptoms. I sympathize with your situation and encourage you to continue working with your docs to improve your quality of life. I did not realize that I had small fiber neuropathy and the neurologist I was seeing had never mentioned it. I kept pressing on with my GP and he got me an appointment with a neurologist out of town. Within a few minutes of talking, she said it sounded like SFN and scheduled a skin biopsy which confirmed the diagnosis. My point is this: Never give up. Keep pressing forward to make sure you are getting the care you need. Doctors are well meaning but are just people and subject to the imperfections of being "human". You are far from alone and I wish you the best in your quest.

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@crustycat

Very sorry to hear of this @preknight. Neuropathy is a difficult issue to treat. I was diagnosed T2D 20 years ago and regrettably did not take it serious (not saying this is your case). I wish I had managed my diet, specifically carb intake, to mitigate some of the neuropathic symptoms. I sympathize with your situation and encourage you to continue working with your docs to improve your quality of life. I did not realize that I had small fiber neuropathy and the neurologist I was seeing had never mentioned it. I kept pressing on with my GP and he got me an appointment with a neurologist out of town. Within a few minutes of talking, she said it sounded like SFN and scheduled a skin biopsy which confirmed the diagnosis. My point is this: Never give up. Keep pressing forward to make sure you are getting the care you need. Doctors are well meaning but are just people and subject to the imperfections of being "human". You are far from alone and I wish you the best in your quest.

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Thank you @crustycat . I visit my neurologist every few months so he can monitor my symptoms. It is slowly progressing. I use my elliptical 4 times per week just to keep going. Only using a cane to keep from falling. Living one day at a time. I am only 76 years old and plan on many more years.

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Worse when lying down. Just now about leapt off the bed due to a shock pain from my big toe

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Does clonazepam have bad side effects? Is it by prescription only?

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I can relate! I have had neuropathy in my feet for years now; it works its way up past the ankles and strikes when I sit and when I lie down. There are also special areas of pounding nerves. Vicious! The cause, supposedly, is scar tissue from three back surgeries now years ago. Many times I throw myself out of bed, desparate to change positions. Short of that, the most effective treatment I have devised is HEAT, high heat, from an electric blanket, or, better yet, an electric mattress pad which heats most effectively at the lower end of the bed where my feet are. This method seems to over-ride the neuropathy sensations considerably. I also lie in bed and do every foot exercise I have even been told to do! In addition, I may also try placing my feet on ice cube trays, but since this involves going upstairs I don't do this very often. Of course, massage with any of the products on the market like bio-freeze helps too. At the heart of all this, for me, is an internal process of acceptance that goes deeply underneath the pain with the secure knowledge that it does not last forever; eventually, I can wear the pain out, though it's a tiring process and wrecks a good night's sleep. During the day I can find myself just overcome with body aches, a new problem for me. If these pain sources were constant and intractable, well, I don't know what I would do; for me, these things are what I've come up with that help. I also see a podiatrist for injections once in a while and I have prescription pain meds which I resort to at times. The relief from them is remarkable, but robs me of my "mo-jo". Smetimes it's worth it! I remember, in younger days, wondering why older people were so slow and stiff - now my empathy comes from being there myself.

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A neurologist at a teaching hospital near me said the chances of anything to help me are "vanishingly small" but to try "Two Old Goats Essential Oil Lotion" (Amazon) on my legs at bedtime. It helps enough with my leg burning and foot numbness to get to sleep, but it wears off after two or three hours.

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When Iay down...arlene reiss

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@abhall

Indeed, being active results in less noticeable nueropathic distress. I believe that relaxed muscles enable and accentuate the wherewithal to 'feel" the distress.

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Me too! Don’t know why b

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