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Old 07-26-2020, 08:35 AM #1
Cindyjo Cindyjo is offline
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Default I'm Cindyjo . It hurts.

Hello all, I'm new to Neurotalk. I come here today feeling discouraged, desperate and like people think I'm a psychosomatic nut case. I've been a type II diabetic since the late 90's. PN symptoms started hitting me hard in 2005. It was not the typical diabetic neuropathy in the hands and feet. It was widespread shocks, twitches, bee stinging pins and needles all over my body. The fatigue was terrible. They have tested me for MS 3x through the years and thankfully it was negative. So, diabetic polyneuropathy and fibromyalgia are my current dx..

Last summer I started really going downhill. In March I entered a flare in which symptoms have exploded. I'm literally in tears most days. Today I told my husband that I feel like a sunburned, wiggley, rubbery, unraveling, shocking mess. I was taking 2400 mg of gabapentin a day but it stopped working. I have changed to 450 mg of Lyrica and baclofen 2x daily. The bottom of my feet are so sore and my legs are weak making it difficult to walk. The fatigue is so draining.

I'm here for information, validation and to support others who also feel this invisible pain. I'm in a discouraged place right now. I worry this is my life from here on...... I'm hoping that connecting through this forum can help me find ways to cope and that I in turn can help others.

Cindyjo
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Old 07-26-2020, 12:50 PM #2
Kitt Kitt is offline
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Welcome Cindyjo. I hope you get an answer. Others will be along. Take care.

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Old 07-26-2020, 01:30 PM #3
caroline2 caroline2 is offline
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Welcome and in my humble opinion, the pharma drugs people take for neuropathy are causing more damage than good. And I've heard enough about withdrawal from the drugs. I've posted a LOT on this neuropathy issue and mostly in the PN group and vits/supplements/minerals area. A lot of good help to consider NOT in the pharma drug world.

And I hope your are really controlling your sugars/carbs since you deal with Type II, WE do the healing and there is a so much info out there for us to consider.
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Old 07-26-2020, 03:57 PM #4
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Welcome, Cindyjo!


I hope you'll find some answers soon. All too many people with neurological problems have trouble getting a diagnosis.

It seems to me that neurology is still in its infancy as a science. They have to learn a great deal more than they now know.

Patients come in with a boatload of symptoms, and the neurologists spend years scratching their heads.

Meanwhile, those of us with the symptoms often have to rely on one another just to muddle through each day.
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Old 07-26-2020, 04:04 PM #5
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Quote:
Originally Posted by agate View Post
Welcome, Cindyjo!


I hope you'll find some answers soon. All too many people with neurological problems have trouble getting a diagnosis.

It seems to me that neurology is still in its infancy as a science. They have to learn a great deal more than they now know.

Patients come in with a boatload of symptoms, and the neurologists spend years scratching their heads.

Meanwhile, those of us with the symptoms often have to rely on one another just to muddle through each day.
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Old 07-26-2020, 04:04 PM #6
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Hi Cindyjo

Welcome to NeuroTalk .

I am sorry to read about your Type 2 diabetes; the diabetes forum here is worth checking out as is the PN forum.

You can also use the Search option (https://www.neurotalk.org/search.php) to find topics and threads which could help you.

Best wishes.
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Old 07-27-2020, 07:12 AM #7
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--while you're checking out our Neuropathy forum, keep in mind that you could be "co-morbid"; the attribution of your neuropathy solely to diabetes may not be the whole story.

There are over 200 potential causes of neuropathy--nerves are easy to damage--AND the symptoms of nerve compression in the spinal cord, or central pain syndromes that stem from the brain, can have symptoms that exactly mimic peripheral problems. This is why it's so hard to parse out the cause(s) of widespread neural symptoms, and why it often involves a very long and detailed testing protocol.

In the Useful Websites part of that forum, there are several protocols for testing for neuropathy cause; you can definitely compare them to tests you've had and see if more investigation might be a good idea. It's been my experience that unless you've been tested at a major academic center with a good neuropathy department (and there aren't that many of those), testing is often spotty and incomplete, leading to presumptions or even the dreaded "idiopathic" designation.
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