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Author Topic: Severe Neuropathy  (Read 6914 times)

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Offline 22 years

  • Member
  • Posts: 9
Severe Neuropathy
« on: December 08, 2008, 08:50:54 PM »
Just wondering how others have dealt with severe neuropathy.  After 30 days of going to emergency rooms they finally admitted me and put me on Neurontin 300mg every 8 hours, though I am now up to 1200mg every 8 hours.

Was considering Massage therapy but not sure it will help.

Give me some insight please.  Have not been sick for 21 years up to this... oggg

Thanks Rick
Human relationships exist to produce love. When we pollute our relationships with unloving thoughts, or destroy or abort them with unloving attitudes, we are threatening our emotional survival. —Excerpted from A Return to Love: Reflections on the Principles of A Course in Miracles

Offline aztecan

  • Member
  • Posts: 5,358
  • 28 years positive, 56 years a pain in the butt
Re: Severe Neuropathy
« Reply #1 on: December 08, 2008, 11:06:32 PM »
Hey Rick,

First off, welcome to the forums and the long-term survivors forum.

Neuropathy is a pain, literally, isn't it. Is yours a result of the virus or the meds?

It really doesn't matter, because the pain is real whichever the cause.

Neurontin is the drug du jour for neuropathy. I've never taken it, but others have with varying degrees of success. Some take considerably more than you are taking.

I don't take any meds for my PN at the moment. To date, I have just put up with it. I have found that not letting my feet get too warm helps. Also, footwear is critical. Find a pair of comfy shoes and wear them.

Add Dr. Scholl's Gel Inserts if you need to. They can sometimes help.

If you look here on this forum, you will see another thread posted by AlanBama, who also suffers a great deal with PN.

A massage may help. Sometimes I find foot massages do and sometimes they don't. Sometimes I have just banged my foot against the wall or the furniture trying to get the stabbing pains to stop.

I know others will post here for you. They might have more advice that I just can't think of at the moment.

Glad you've joined in and I look forward to hearing more from you.

HUGS,

Mark
« Last Edit: December 08, 2008, 11:09:01 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline 22 years

  • Member
  • Posts: 9
Re: Severe Neuropathy
« Reply #2 on: December 08, 2008, 11:35:21 PM »
Thank you for the warm welcome.  Until I found this list I thought I was the only Long termer..

Du Jour is right.  The first pill of 300 they gave me I could feel something happening.  Told them to quit teasing me and give me lots more.  When I got out of the Hospital I was on 900mg x 8 hours, which I was happy as it brought the pain down from 20 to a 3.  Then after a week home and tired of any pain I raised it which did the trick.. down to 0 now.  MRI showed nothing so Neuropathy is the only thing they can figure.  Do not know if it is the Virus or the drugs as I stopped the drugs as soon as the pain started.  But the pain kept getting worse my butt even went numm.

Again thank you for the welcome.

Rick
Human relationships exist to produce love. When we pollute our relationships with unloving thoughts, or destroy or abort them with unloving attitudes, we are threatening our emotional survival. —Excerpted from A Return to Love: Reflections on the Principles of A Course in Miracles

Offline Miss Philicia

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  • Posts: 23,565
  • celebrity poster, faker & poser
Re: Severe Neuropathy
« Reply #3 on: December 08, 2008, 11:59:17 PM »
300mg of Neurontin is a very small dose.  I take 900mg/day and that's still not considered large as you can see compared to the 4800 you now take each day.

My PN is all residual from medications that I took in the early/mid-90's.
"I’ve slept with enough men to know that I’m not gay"

Offline veritas

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Re: Severe Neuropathy
« Reply #4 on: December 09, 2008, 04:36:17 AM »

Offline 22 years

  • Member
  • Posts: 9
Re: Severe Neuropathy
« Reply #5 on: December 09, 2008, 06:35:00 AM »
My PN is all residual from medications that I took in the early/mid-90's.

My new HIV Dr. thanks that that is what happened to me.  I had severe leg pains on my old drugs, I stopped them then 2 days later the pain was gone.  Went to Dr., old one at the VA that I fired, and she suggested I go back on and see what happens.  After 2 weeks the pain was back, I quit taking the drugs again and 4 days later it was gone.  Then 2 weeks later I was in the emergency room with pain.  After going to VA ER 5 times, as it progressively got worse, they admitted me.  They did a MRI and Cat Scan and could not find anything and told me they could not find anything and sent me home.  In the VA they had me on 6cc's of Morphine which knocked me out but did nothing for the pain.

Pain continued to get worse and I was getting real numb on my butt so I went to a different hospital who admitted me, after 30 hours.  Neurologist gave me the Nourton and it worked.  I was ready to give up, after 30 days of such severe pain...

Question thought, does the Neuropathy effect anyones arms.  Not that I can feel much pain, seems my arms are getting a little weird too.
Human relationships exist to produce love. When we pollute our relationships with unloving thoughts, or destroy or abort them with unloving attitudes, we are threatening our emotional survival. —Excerpted from A Return to Love: Reflections on the Principles of A Course in Miracles

Offline 22 years

  • Member
  • Posts: 9
Re: Severe Neuropathy
« Reply #6 on: December 09, 2008, 06:36:07 AM »
Acetyl-l-carnitine worked for me:
http://www.lef.org/magazine/mag2000/may00-cover2.html

Thank you for the information.  I will talk to the Neurologist when I go back in 3 months.

Rick
Human relationships exist to produce love. When we pollute our relationships with unloving thoughts, or destroy or abort them with unloving attitudes, we are threatening our emotional survival. —Excerpted from A Return to Love: Reflections on the Principles of A Course in Miracles

Offline AndyArrow

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  • Posts: 1,196
Re: Severe Neuropathy
« Reply #7 on: December 10, 2008, 03:20:11 AM »
Question thought, does the Neuropathy effect anyones arms.  Not that I can feel much pain, seems my arms are getting a little weird too.

I don't have any pains in my arms my hands tingle a little bit & tend to run cold.  Although it's rather mild compared to my feet.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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  • Posts: 9,626
  • Diagnosed + 1989
Re: Severe Neuropathy
« Reply #8 on: December 10, 2008, 12:42:31 PM »
I take 800 mgs of Neurontin 3 x a day and that seems to help (also take Ibuprofen 600 mgs 3 x a day, don't know if this does anything or not).  I also have diabetes (which can make neuropathy much worse) and try to keep my sugars under control, though it's a bit hard at the holidays.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline Miss Philicia

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  • Posts: 23,565
  • celebrity poster, faker & poser
Re: Severe Neuropathy
« Reply #9 on: December 10, 2008, 12:54:02 PM »

Question thought, does the Neuropathy effect anyones arms.  Not that I can feel much pain, seems my arms are getting a little weird too.

I get occasional lightning bolts of electricity down my arms, but not much -- it's generally confined to my legs.  And it's always bolts, never a persistent numbness or pins/needles feeling for me, which from what I've seen this isn't the most common result of PN.
"I’ve slept with enough men to know that I’m not gay"

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Severe Neuropathy
« Reply #10 on: December 14, 2008, 02:35:57 AM »
It got so bad for me that my Dr finally sent me to a pain clinic. Hopefully you have some in your area, it really helped me allot. Check it out. PM me if you want to know what I'm on. Best of luck. be open minded helps too!
Positive since 1985

Offline kajnjewel

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  • Posts: 71
  • Living Life with a Passion!
Re: Severe Neuropathy
« Reply #11 on: December 15, 2008, 08:42:49 PM »
Neuropathy got so bad for me that I had to be in a wheelchair for awhile.  What helped me more than Neurotin was a small does of Elavil that my HIV doc put me on.  What helped the best thought was changing my medication combo.

Good luck
When you were born, you cried and the world rejoiced; live your life in such a manner that when you die, the world will cry and you will rejoice!

Offline 22 years

  • Member
  • Posts: 9
Re: Severe Neuropathy
« Reply #12 on: December 15, 2008, 08:45:53 PM »
Thank you to everyone of you  ;)  lots of good information that I will process and take to my dr.  I hope none go through the pain I did. 

Good luck, Rick
Human relationships exist to produce love. When we pollute our relationships with unloving thoughts, or destroy or abort them with unloving attitudes, we are threatening our emotional survival. —Excerpted from A Return to Love: Reflections on the Principles of A Course in Miracles

Offline AlanBama

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  • Posts: 3,578
  • 'class' of '87
Re: Severe Neuropathy
« Reply #13 on: December 16, 2008, 02:12:14 PM »
Be careful about pain meds; when ddc did a number on my feet in 1992, I became addicted to Fentanyl (delivered through patches - Duragesic).   Took me years to break that addiction.

My pain is bearable now, with ibuprofen most days.   

hugs,

Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

 


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