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-   -   Board Vets, I'd like Your Perspective (https://www.neurotalk.org/peripheral-neuropathy/201979-board-vets-id-perspective.html)

mrsD 03-17-2014 06:37 PM

That is so terrible. I really feel for you. :hug:

You could contact Pfizer and ask for some help with the cost of the medication.
https://www.phahelps.com/pages/misc/Default.aspx

They may be able to find other venues to help you too.

Susanne C. 03-18-2014 11:00 AM

It is disgraceful that your pain was not taken more seriously. I believe that the way you approached your doctor was very commendable and his response indicates that you need a new doctor. Neuropathic pain is very hard to treat, and at its worst, extremely debilitating. Under-treated pain has been known to lead to depression and even suicide, and doctors should feel an obligation to relieve it. Visiting a neurologist, while necessary, will probably not help, as they seldom prescribe pain medication.
I am currently on MS Contin, 30 mg. x 3, Gabapentin 600 mg. x 3, Baclofen 10 mg x3, and oxycodone, 7.5/325, as needed for breakthrough pain, averaging one per day. On this regime I am able to run a household of 5-7 persons, go for walks (I use two hiking poles and my husband accompanies me in case I fall), and drive in a 5 mile radius. Without it I would be depressed, my thoughts dominated by the pain, and unable to leave my sofa and blankets. Even with it I am subject to an all over sunburned feeling, stiffness, numbness, and the feeling of furry creatures running all over my legs and hips. The horrible shooting pains in my legs are calmed by the medication.
I hope that you are able to find a doctor to work with you on finding the right combination of medicines. It is unconscionable to withhold real pain medicine from someone suffering with this disease.

surfer00 03-18-2014 12:31 PM

Thank you everyone for your insights. I think part of me posted here for a little pity. No one else really gets it. My wife has been amazing, so maybe one 'normie' gets it.

Mrs D and others, I have taken your suggestions to heart. I just received epson lotion in the mail yesterday. My wife gave me a foot/leg rub last might and it felt wonderful! I didnt really notice that the epson provided any relief on its own, but the combination of lotion and the rub felt amazing.

Mrs D - I am now taking lukewarm showers as suggested. I always enjoyed a long hot shower in the morning and never thought that I shouldn't continue to do so. Too early to tell if it helps, but I will certainly continue.

I also appreciate the heads up about Pfizer possibly helping me with the costs. Apparently an exception is going through channels to approve me for my meds.

Susanne C. - thanks for the input. I have always said that when I see a grumpy or uncaring doctor, nurse, aide, etc that they should change occupation. Medicine and a few other jobs like school teacher should be left to only those with a calling and a "customer first" mentality. I have met amazing doctors and doctors that I wouldn't let in my house when I wasn't there.

I am one of those dreaded 'lurkers' I'm afraid. I take much more than I give here and I want you all to know how much I appreciate you all.

Nervous1 03-18-2014 05:14 PM

Hey surfer00,

I have recently started taking a low dosage (25mg) of Lyrica, and recently added Imipramine 10 mg over the past couple of days. I dis not want to increase the dosage of Lyrica due to the sides. After learning to deal with the sides of Lyrica, it began to lose some of it's effectiveness, so I had to wanted to add the Imipramine. I take both together before bed.
So far I am having pretty good luck.
The pain has not ben eliminated, but definitely has helped with cramping, burning, pins and needles. Since taking the Lyrica, I have had some involuntary muscle jerks, most in legs. I have problems with pain in my neck, scapula, low back, feet and hands.

About a mont and half a go I was in the worst pain I have ever experienced and so far, I have relief from this.

I also take Vitamin B12, B1, R-Lipoic Acid and Magnesium

N1



Quote:

Originally Posted by surfer00 (Post 1057920)
Thank you everyone for your insights. I think part of me posted here for a little pity. No one else really gets it. My wife has been amazing, so maybe one 'normie' gets it.

Mrs D and others, I have taken your suggestions to heart. I just received epson lotion in the mail yesterday. My wife gave me a foot/leg rub last might and it felt wonderful! I didnt really notice that the epson provided any relief on its own, but the combination of lotion and the rub felt amazing.

Mrs D - I am now taking lukewarm showers as suggested. I always enjoyed a long hot shower in the morning and never thought that I shouldn't continue to do so. Too early to tell if it helps, but I will certainly continue.

I also appreciate the heads up about Pfizer possibly helping me with the costs. Apparently an exception is going through channels to approve me for my meds.

Susanne C. - thanks for the input. I have always said that when I see a grumpy or uncaring doctor, nurse, aide, etc that they should change occupation. Medicine and a few other jobs like school teacher should be left to only those with a calling and a "customer first" mentality. I have met amazing doctors and doctors that I wouldn't let in my house when I wasn't there.

I am one of those dreaded 'lurkers' I'm afraid. I take much more than I give here and I want you all to know how much I appreciate you all.


surfer00 03-18-2014 09:07 PM

Hey Nervous,

Thanks for the info on Lyrica. I'm crossing my fingers that it provides some relief for me too!


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