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#1 | ||
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Junior Member
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Thanks to Mrs D for nudging me in here...
I've been suffering fatigue, poor concentration for several years. In March, I had a virus/high temperature and started to get burning in my palm and fingers. A month later, I had another virus/temperature, and since then nerve pain has spread to all four limbs. Symptoms include muscle cramps, it feeling like a saw's been taken to my wrists, needles and burning in my toes, sensations like my fingers breaking. My walking's also been affected. Legs sometimes go weak, and feels like I'm drunk below the waist. Muscles in shins and forearms sometimes go rock hard. It feels like needles are pushed in my finger joints. There are times when the nerve pain leaps around my body like tasmanian devil. In fingers, then hip, toes, arms... a few seconds in each... brief pause, then off it goes again! It's like living with a small, malevolent gnome who's equipped with a hammer and a spike. Tests to date: MRI scans (spine and head)... clear Neck and chest x-rays... chest fine, neck shows some wear and tead. Traction... no improvement. Blood tests... diabetes diagnosed 9 months ago... all others clear. Lupus... clear Anti-nuclear thingies... clear B12... plenty Neurologist... some sensation loss in left foot. Nerve conductive tests... happening this Friday They've tried me on gabapentin (no impact on nerve pain, but I felt as high as a kite - and incredibly happy!). Walking was getting worse quite rapidly and I was existing on 3-5 hours sleep a day with nerve pain preventing me from sleeping. In the Summer, in the mornings I was walking as if I was an extra on the Thriller video, at least from the waist down! Then they moved me to pregabalin. A little improvement in nerve pain, definite improvement in walking and some improvement in sleep, but some side effects I don't like. My hands feel like they've been dipped in oil (a really horrible sensation). I have 'brain farts'. I do a lot of writing, and reread a paragraph to find 'word substitution' and on rare occasions I've missed a letter out (imagine a paragraph with no 'e's). I also feel grumpy. Ratty as hell. It's not me, I don't like it. There's still the odd day when my walking's weird (to the extent the police thought I was drunk the other week as they watched me walk to my car). Next we're probably going to try duloxetine as the side effects of pregabalin aren't pleasant for me. The neurologist is convinced I don't have MS. While I do have diabetes, the symptoms all started in the hands and only recently moved into the feet. I don't have the tender spots you'd experience with fibromyalgia. Tests have ruled out lupus. The closest I have to a diagnosis is an odd variation of chronic fatigue syndrome and maybe a bit of diabetic neuropathy too. ..the most recent weird symptom is a feeling that my hands are slimy. I can't find any reference to this on the net. Washing doesn't help. It lasts anywhere up to a day, then *poof*... it's gone? Argggggg Does anyone have any ideas (or does my ex-mother-in-law have a voodoo doll and set of pins)? What happens in a nerve conductivity test??? Joe |
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"Thanks for this!" says: | DejaVu (10-14-2012) |
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#2 | |||
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Wisest Elder Ever
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As per your introductory posts on the New Members Introduction forum here,
http://neurotalk.psychcentral.com/thread177992.html Many of your symptoms, sensory, memory issues, can be traced to your RX drug use of simvastatin and gabapentin. I won't repeat the content of that post here. But I will say this. Metformin often lowers cholesterol by itself by changing your metabolic profile. Consumption of fructose and sugar, and/or alcohol will cloud this benefit substantially. So consider this, if you decide to discontinue your statin. You will have to discuss this with your doctor, if you decide to discontinue the statin. But metformin has a negative impact on B12, and that will create other nerve problems with time. Also I'd look at your lifestyle, and exposure to things in your environment. Sometimes soaps, solvents, cleaners, chlorine, gardening chemicals will affect the nerves in the hands.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | DejaVu (10-14-2012) |
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#3 | ||
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Junior Member
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I learned very quickly that if I eat anything with processed sugar on the label, I feel like I haven't had sleep for days. A prime cause of my fatigue. Orange juice can knock me out for 4-5 hours. Due to this, once learning I had diabetes, I quite radically changed diet.
Doubt exposure to garden chemicals is a problem. I live in a very wild part of the country where I know the farming neighbours, and theirs are sheep farms with very little chemical use. I have a septic tank for sewage so only use very 'gentle' detergents (as you can't risk killing the bacteria in the tank which are needed to digest... well... we'll leave that one as it may be close to dinner time). After going on metformin, I lost a tonne of weight. Since going on gabapentin/pregabalin, I've put a tonne of weight back on? Joe |
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"Thanks for this!" says: | DejaVu (10-14-2012) |
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#4 | |||
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Wisest Elder Ever
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Yes, weight gain is a common side effect of gabapentin.
Keep in mind that learning new things, that you didn't know about concerning your medications is going to be difficult to come to grips with. Some people respond with disbelief, surprise, shock, and/or horror. So read a bit every day and let it settle in so you will be able to decide where to go and what to do with the new information. Our subforum here has many informational posts, and our B12 post is here: http://neurotalk.psychcentral.com/thread85103.html I've been collecting medical information on PN for over a decade. I only post here that which is important, and substantiated. On the B12 thread is a link to American Association of Family Physicians, about managing B12 deficiency in patients (the article is written for DOCTORS but is understandable to the layman as well). It was posted by AAFP in 2003, and still today, we see people coming here with horribly low levels, that their doctors have said were "normal". Unless people take that extra step and look into the test results themselves, they would continue to decline and worsen. It is sad but true unfortunately. Replenishing the B12 is simple, and for pennies a day one of the most affordable medical interventions out there today! The same happens with Vit D. Doctors will test for it, but then turn around and prescribe a decades old version of D(ergocalciferol D2) in a capsule, that we know today, does not work. But the doctors do it anyway, because their reference books have not be updated either. So as patients we do have to do some homework in this area. Thankfully we have venues like this to discuss things and share information found.
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All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | DejaVu (10-14-2012) |
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#5 | |||
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Wisest Elder Ever
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BTW.... things can be slow here on weekends. They typically are and always have been.
I am around more because of my "other duties" here. ![]()
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei ************************************ . Weezie looking at petunias 8.25.2017 **************************** These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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"Thanks for this!" says: | DejaVu (10-14-2012) |
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#6 | ||
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Junior Member
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I'm an old dog, but I'll cope with new concepts.
I never take a medication without gaining some measure of an idea as to how they work. Reading up about duloxetine and having noticed it blocks two of the same neurotransmitters as cocaine, am wondering if its anesthetic qualities similarly stem from blocking sodium ion channels? I must admit I enjoyed the happy feelings that came with gabapentin (at least for me), but its pain killing properties were negligible. Pregabalin is more effective, but I don't like the side effects. On gabapentin I felt sharp as a pin, whereas I feel a bit blunt on pregabalin. My experience is that the medical profession don't have a clue about neuropathy. I'm on my third neurologist, as the first two hadn't read my notes, which was plainly obvious. The new one is better, but would be after I'd lobbed an exec complaint at the hospital (on account of the neurologist mistaking pregabalin for gabapentin, and recommending I increase dosage by a factor of three (and I was on 600mg which she said was a 'baby dose')). Just as well I don't automatically trust what they say, as an increase to 1800mg of pregabalin may have been a bit much even for my system! Doctors seem to have a list of medications which they'll throw at you until they find one which seems to do more than the others, without such unpleasant effects as some. Other than that, they seem pretty mystified. I'd rather speak to people who've gone through trial and error, so you'll find me open-minded! Joe |
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