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airskypony · 08-09-2011, 06:35 PM

My pain is practically 24/7, and it averages a 5 during any given day. At bedtime, it ranges between 8 and 10, and there are the days and nights where it simply "rages" on and on!

To help me, my neurologist gives me Gabapetten (300mg tablets) and two different Morphine sulphate tablets. The one is 30mg ER, and I used to take one tablet, twice a day. I also have 15mg IR's that can be used for breakthrough pain, every eight hours.

When things get so bad that I can't stand the pain, itching sensations, etc., I pull out my tube of Capzasin creme. It helps to use it sparingly.

Other than that, I just have to live with the pain. Surgery has been discussed, but, not recommended due to phantom pain?

I just wondered what many of you do to handle the pain of this disease.

BTW, I keep my A1C level in the mid 5 range, and use Vitamin B supplements. My rapid progression of neuropathy is not related to my diabetes numbers, because I keep them well in line.

I'd love to hear from those of you who suffer from this painful disease, and hear what you do to handle and control the mind blowing pain!

Pastor Paul

RisingParrot · 08-10-2011, 07:23 AM

I just try take my meds on time(I take 1200mg of Neurontin 3 times a day) and try and not do anything stupid/be careful to not fall.

Besides that there really isn't a whole lot I can do...deal w/it, try and be positive and not let it kick my butt too bad.

Hope you have a great Wednesday.
J

6122000 · 08-10-2011, 11:43 AM

I FEEL YOUR PAIN AND FRUSTRATION AT HAVING THIS TERRIBLE DISEASE. I AM 38 YEARS OLD AND HAVE SUFFERED FROM IDIOPATHIC NEUROPATHY BOTH MOTOR AND SENSORY FOR 9 YEARS. I HAVE BEEN PARALYZED FROM THE CHEST DOWN THREE TIMES SINCE 2005 AND HAVE LEARNED TO WALK AGAIN EACH TIME. I AM NOT A DIABETIC AND HAVE BEEN TESTED MANY TIMES. MULTIPLE DOCTORS INCLUDING NEUROLOGIST AT EMORY UNIVERSITY IN ATLANTA, CAN NOT EXPLAIN WHY I HAVE THIS DISEASE. I FEEL FOR ANYONE WHO HAS CRIED THROUGH THE NIGHT WITH THE BURNING PAIN THAT A SIMPLE SHEET WILL CAUSE. I AM CURRENTLY GOING THROUGH A VERY BAD PAIN FLARE MYSELF, IT SO HAPPENED TO COME ABOUT WHILE MY DOCTOR WAS OUT OF THE COUNTRY. EVERYWHERE I TURNED FOR HELP THEY TOLD ME TO GO TO THE ER FOR EXTRA PAIN CONTROL. IF YOU HAVE EVER BEEN TO THE ER WITH NEUROPATHY YOU KNOW THAT THEY WILL TREAT YOU LIKE A DRUG ADDICT SO I LAID IN THE BED AND CRIED. SOMETIMES THE PAIN WAS SO BAD I WOULD GET THE COLD SHAKES. VERY FEW PEOPLE CAN UNDERSTAND A PAIN LIKE THAT BECAUSE THEY CANNOT SEE THE DAMAGE IT HAS DONE TO YOUR BODY. SORRY THAT I HAVE RAMBLED ON SO MUCH. TO ANSWER YOUR QUESTION OVER THE YEARS I HAVE TRIED ALL KINDS OF PILLS IN HUGE AMOUNTS. TO THE POINT WERE I WOULD GET SICK OF PILLS AND EMBARRASED TO GO TO THE DRUG STORE. I CURRENTLY TAKE 10 DIFFERENT MEDICATIONS FOR SEVERAL CONDITIONS.BELOW I WILL LIST WHAT I CURRENTLY TAKE FOR MY NEUROPATHY, MY PAIN IS MAINTAINED AROUND A 6. GOOD LUCK AND FIND A DOCTOR WHO BELIEVES IN YOU.
MEDICATIONS FOR NEUROPATHY

MS CONTIN 30MG EVERY 8 HOURS
NORCO 10/325 EVERY 6 HOURS
ZANAFLEX 4MG EVERY 8 HOURS
NEURONTIN 800MG EVERY 8 HOURS
LIDODERM PATCHES 5% 12 HOURS ON/12 OFF

airskypony · 08-10-2011, 10:43 PM

Quote:

Originally Posted by 6122000

I AM CURRENTLY GOING THROUGH A VERY BAD PAIN FLARE MYSELF,

I understand your plight quite well. I'm in the middle of a major flare up, and it raises my blood sugar numbers and blood pressure. This disease is not a disease for "sissies!"

I have several doctors who are treating m for the pain, and they are very helpful and understanding.

I am also being treated for severe depression, as this disease can take your emotional footing right out from under you!

Take care, and be strong. This disease may not be able to be defeated, but, we can face it like people determined to not be beaten!

Pastor Paul

dee088 · 08-10-2011, 11:05 PM

Hi Airskypony. I am sorry you suffer from this terrible disease. My husband has neuropathy and at one time a few year ago tried morphine 30mg er and it did nothing. He takes norco 10/325 and lyrica 600mg. It helps somewhat. He goes next month to see the neurosurgen to see what they can do because lately he has been falling. I hate seeing him like this. So I don't have this disease I know first hand what you are going thru. I hope you can get some relief fast! Best of luck to you!

RisingParrot · 08-11-2011, 07:26 AM

Quote:

Originally Posted by dee088

Hi Airskypony. I am sorry you suffer from this terrible disease. My husband has neuropathy and at one time a few year ago tried morphine 30mg er and it did nothing. He takes norco 10/325 and lyrica 600mg. It helps somewhat. He goes next month to see the neurosurgen to see what they can do because lately he has been falling. I hate seeing him like this. So I don't have this disease I know first hand what you are going thru. I hope you can get some relief fast! Best of luck to you!

VERY sorry your husband has had a rough path lately...my balance is complete crap...after falling in the shower a few years back K and I did 2 things that made my life a LOT easier. First, we installed a handheld shower and shower chair for me(and believe me w/o it taking a shower would be pretty much impossible at this point) and Second, we went to REI and bought me a Walking Stick...that thing ROCKS!!!! I don't use it daily at work but keep it in my Jeep so that if we do go somewhere and I want to use it I have it right there. It comes in very handy in crowded places or where I'm going to walk a lot ie Malls or Grocery Shopping.

Just 2 things that might make your husbands life a little easier and those of us here w/PN/SFN ect I think we will take any break we can get.

I hope you and your husband have a great/less painful day.
J

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