[JoeTheToad]

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

[mrsD]

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.

[JoeTheToad]

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

[mrsD]

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.

[mrsD]

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.

[JoeTheToad]

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

[mrsD]

Duloxetine (Cymbalta) blocks "reuptake" of serotonin and norepi in the synapse and the result of that is more serotonin and norepi are around the receptors for longer periods. It does not block the receptors. Normally after a synapse action, the neurotransmitters go back to the cell for a waiting period..until needed again.(reuptake). I don't recall seeing any sodium ion channel activity declared for duloxetine.
http://en.wikipedia.org/wiki/Duloxetine

Duloxetine is the only antidepressant so far with serious potential to damage the liver. It can raise blood pressure, and therefore has more serious side effects than other drugs in that family like Effexor.

Cocaine's major effects are on the dopamine system, with minor effects elsewhere. Drugs are typically not "pure" in action, and often there are spill overs to other systems. An example is the serotonin release some opiates cause (oxycodone). Cocaine has historically been chemically modified, to other drug entities like lidocaine, to remove the euphoric dopamine effects, and to leave the sodium ion channel effects and hence have totally different pharmacologic targets.

Neurotransmitter actions are very complex, and we've learned that SSRIs for example don't really do what was initially thought. More time and research are needed to understand their complex actions.

But the current belief is that duloxetine, works on the serotonergic pathways in the brain that interpret subjective pain signals. TCAs like amitriptyline and nortriptyline also work in the same way. However, new studies are showing TCA's ...specifically amitriptyline may enhance growth factors, in nerves and help with healing. The SSRI's do not have this function as yet discovered.

Originally Posted by JoeTheToad

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

[JoeTheToad]

I appreciate that duloxetine has some risks attached, but don't they all?

My understanding is that duloxetine increases risks for people with pre-existing liver failure and that out of the million or so people prescribed cymbalta, it was stopped as a medication for 0.3% of patients due to liver toxicity and elevated liver enzymes were detected in 1.37% of the population. I appreciate a couple of people died, but for me... at these levels, I'd say that's probably an acceptable level of risk. Something to think on though, and thanks for raising it MrsD.

I'm not a heavy drinking... very, very occasionally these days.

Its impact on blood pressure wasn't something I was aware of, and thanks for the heads up. I'll raise this with the neurologist.

I know drugs aren't ideal and carry risks, but at the moment, if I discontinue pregabalin, my walking goes to pot, and the pain increases. As a writer, the side effects are not acceptable (word substitution when I type... almost like a chemically induced dyslexia) and this general feeling of grumpiness. I'd sooner be happy and in pain... but I'd prefer to be happy and not in pain.

More than anything at the moment... I'd love a diagnosis... a name... you know...

Joe

[mrsD]

On this forum, we tend to focus on healing, stopping progression, and or reversing to some extent.

Some people do very well, others not. Some remain on RX meds and some are able to not need them any longer. But there is no cure.

At this time only IVIG has disease modifying actions. A new drug Rituxan, is sometimes used for gammonopathies..but that is still experimental. People with autoimmune PNs may see a reduction in symptoms when the autoimmune process is blocked.
Diabetics also see some improvement with dietary control tightening and some supplements.

Brian, here is an example of a very nice reversal of diabetic PN.
You can use "members list" here and find his posts.
He checks in generously and occasionally now, since he is improved.

Most of the drugs used for PN today, only mask the symptoms.
They do not affect the process, which tends to continue, depending on the causes. Hereditary PN (CMT) really has no
treatment still at this time. However, keeping B12, Vit D and
magnesium intake normal can help some with symptoms.
It is unclear at this time if mito support nutrients would be useful for these patients.

If you continue on the path of drug induced toxicity, then your only recourse is symptom relief.
Other common drugs also can cause PN:
http://neurotalk.psychcentral.com/thread122889.html
Fluoroquinolones continue to appear with increasing frequency as neurotoxic. Often given freely by doctors for simple infections, many people end up exposed to them as well.

Here is a listing of statin papers and neuropathy:
http://www.greenmedinfo.com/toxic-in...drugs?ed=35335

There is an interesting video at this link:
http://articles.mercola.com/sites/ar...erol-meds.aspx

It is amazing how this topic has exploded over the past 5 years, and data is expanding rapidly now.

[mrsD]

I have been thinking about those two high fevers you had right in a row. That is very odd.

There is a condition called ME... myalgic encephalomyelitis
and I think you should search it and see if it fits your issues.

Combined with other factors, it might explain your neurological symptoms.
http://www.fatigueanswers.com/myalgi...-symptoms.html

It can be mistaken for MS and other similar disorders too.
Something to discuss with your doctor.