Neuropathy Community Group

WELCOME to the Neuropathy group... For all those who have all types of Nerve Damage and PAIN! A GREAT PAIN resource area! Over 100 photos and 25 research topics on specific pain issues.

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Caren28 08/12/2008

I have nerve damage in my low back due to cauda equina syndrome and a bad surgery. It's usually under control with huge doses of Neurontin (1600mg 3 times per day). I can deal with the occasional breakthrough tingles and electric shocks. Occasionally, though, I get a full-on attack. It's usually in the middle of the night, and I wake up after dreaming that an animal is gnawing on my foot. It's excruciating pain that leaves me screaming and crying. It usually lasts an hour or so, until I am exhausted and am able to fall asleep with the help of percocet or a sleeping pill.
On a couple of occasions I have considered going to the ER with this kind of pain. I'm sure my blood pressure must shoot through the roof- it's so hard to stay calm and keep breathing. I have never actually gone, though, mostly because I'm not sure there's anything they could do at the ER to help me. Any thoughts on this? Have you ever sought emergency help for nerve pain?

deleted_user 08/12/2008

I have nerve damage in my feet and it is very painful. I sometimes wake up screaming and crying.

What you are going through must be horrible for you, it is really terrible to live with this kind of pain.

All I can say is I really feel for you and I just wanted to support you.

Lots of hugs
Dezna

deleted_user 08/12/2008

I too am going through it,,,I suffer as well with daily muscle twitching in the calves of my legs and on other parts of my body near my spine I can feel them,,,I also take Neurontin and am finding it to be so helpful that I am in the process of going up on the dosage as well..I only take 900 mg. at night so I can sleep,,otherwise forget it,,legs would jerk and cramp and yes, I cry and scream and it's exactly how you describe it...I have to take it now during the day as well..I just take 1 300 mg in the morning and it makes all the difference. I can tell you the difference between you and me and you may not like this but I believe that I don't suffer as bad as you are because I take Oxycontin as well which I am having excellent results with...I was suffering beyond my ability to cope which is why I have opted to take the pain meds and forget about the dependency, because we shouldn't allow suffering to be "ok" for us...be proactive with your health care,,,my Dr commends me because I am proactive always trying to get it figured out along with her,,I do research on my pc and then I talk to her about what I find and she does tests accordingly...I would be lost without my Dr. It's so important to have a very good relationship with your Dr...when dealing with these kinds of physical challenges...I encourage you to talk to your Dr. about other options...I'm having another EMG done,,,they suspect nerve impingement somewhere,,,I can definitely feel something being pinched off...could you possibly have the same? I am here if you ever want or need to talk,,I pray you will find an answer that will be like a "breakthrough" in this area of your life...hang in there,,,hang on tight to Jesus and you WILL prevail...lil

deleted_user 08/12/2008

I forgot to mention that the times I've gone to the ER with this,,,they can only give very strong pain medication through IV or shots,,,but all they can do is basically give you enough pain medicine to knock you out...it is always "Dilotud" that they give me...too much physical activity,,sitting under or in any cold room, fan, wind, etc...so,,,after suffering now for 7 years I am finally getting a power wheelchair to help me get some independence back in my life. I haven't been able to walk much from the damage and pain so I became prettty isolated and started watching TV, and I never used to do that...I enjoy watching movies also now whereas before the accidents you couldn't hardly get me to sit down long enough to watch a movie...I'm single now after being married for 22 years,,,he couldn't handle it,,what a whimp,,,I have HAD to handle it so I don't have much compassion for him. I hope I've helped in some small way today...

deleted_user 08/16/2008

First of all, I'm so sorry that you have to deal with this.
We all know how much fun it ISN'T!

It has taken me awhile to realize that there is no prize at the end of the day for enduring awful pain. That being said, if you are in pain, and have a way to relieve it, do it. It does not help you at all to keep your body in that state.

It's tough to decide when to head into the ER - sometimes it almost seems like more of a hassle than the pain itself, when you think about it. We might have to deal with medical staff who don't understand our condition, who knows how long the wait will be, or if our pain will even be relieved? It took me awhile to figure this out, too - but with my pain doctor and getting to know what I can handle over time, I've come to this conclusion:

If the pain is so severe that I can't handle it at home myself, and can't function, then I know I need help. In my case, when this happens, I know that the pain is only going to get worse, the longer I wait. So, the more timely I get it taken care of, the better off I am.

I really don't mean to sound like a wimp, but it's so true - there really is no gain at the end of the day for dealing with awful pain! And most of us here, I'm sure, have already been down that road enough.

Those are my guidelines, also the advice of my pain doctor. Hope it helps!

Misa

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