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Old 09-14-2010, 08:01 AM
lebelvedere lebelvedere is offline
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Join Date: May 2010
Posts: 114
10 yr Member
lebelvedere lebelvedere is offline
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Join Date: May 2010
Posts: 114
10 yr Member
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Quote:
Originally Posted by Rrae View Post
Thank you Tom,
for writing down those lyrics of the song Mark sang.....
.....and Alffe found online.....

Also very much appreciate that you opened up about your spirituality.
I wanted to ask, but didn't feel it my place, so thank you.....
It's wonderful that you are so open about yourself......
"Colourful and Multi-dimensional" are the words I like to describe you as.

I, too, was glad to see Doxie post
She brought up the SCS (spinal cord stimulator), of which Mark has named his "PJ".....(a name which caught on so well, that a little foal was named in honor of Mark's new 'bionic butt' ............long story).....and I have threatened to mail the colt to Mark's neck of the woods .....

I also have the SCS (Lumbar), which is usually considered as one of the last options in pain relief (peripheral neuropathy in both legs in my case).....

In earlier posting on this thread we spoke briefly of the meds we are taking.
You had asked me the 'burning' question (perfect description of the pain) of what I use to control my pain. Actually, my pain is still there. The SCS 'masks' the pain.
Neuropathic pain is certainly one of the harder types of pain to control.....
and one of the most misunderstood.
I am very grateful that we have an entire forum here at NT devoted to the topic of Peripheral Neuropathy.......it is very active and full of very knowledged individuals.

It is possible you may never get an 'actual' diagnosis.......or at best, it may be labeled 'idiopathic'......which isn't the end of the world. Frustrating, absolutely. But the thing to zero in on is Quality Of Life and if pain is a big part of the battle, then I pray that you can receive a more aggressive approach to control your pain.
I truly believe this would help brighten your outlook and future.
I'm 46 - I have to live with the fact that this 'neuropathy' nightmare may NEVER go away.......I certainly won't die FROM it, but I may die still WITH it.
Before I began receiving the appropriate pain meds, I didn't want to continue living the nightmare,....and we all know this song, so I need not play the broken record.....
I took Lyrica for about 8 months and it was NOT a good experience.....
I don't need to play that broken record either (you mentioned you've read posts about it......so you are aware). Others swear by this med, so I won't condemn it.....


The part of your quote that I highlighted were the EXACT words I used.....
It turned into 'crisis' mode when my blood pressure was out the roof and shortness of breath..(amongst several other side effects).....VERY frightening.

Have you gained a lot of weight?
Just wondering.

Anyway, I've done my share of babbling for the day.....

I hope your Dr will address your physical symptoms.....a simple supplemental pain reliever may do you a world of good (Fentanyl Patches did wonders for me in buying me some better quality of life) and you mention 'weakness'.....you need a boost in your stamina.....there's GOT to be something that will give you some improvement.....
How's your thyroid, by the way?
Mine was practically 'caput', which depleated ALLLL my hormones, stamina....and for all I know could have a direct link to the onset of my neuropathy. I take the thyroid med 'Synthroid' to keep me 'throttled up'.....
I had NO idea how vital our thyroid is to our chemical makeup.
Yikes.

Oh yeah, i said i was done babbling
Later Mate~s
Hello, Rae: Thanks for your latest cheerful note. All I can say is:

babbling -- never. Bubbling, always.

Yes, I put on 5 pounds or so. Lyrica makes me want to eat late at night -- the worst time because your metabolism slows. The weight increase seems to have stopped. That's the least of my problems.

I had a complete lab workup. As for the thyroid, etc., there was nothing there. NOTHING. I'm still waiting for the antiMAG results. I'm definitely going to mention the Fentanyl patches to my doctor. They sound a bit like you, in fact: promising, promising, promising... At 46 the best part of your life has only just begun.

I don't think I'm ready yet for an SCS, but we will see what the specialist says in December. I no longer usually have pains, but when I get them, they're incredible -- usually lightning bolts.

I'm just tired of feeling tired. In fact, I'd better sign off. I'm about to fall asleep in my beer ... and I don't even have any beer.

Bestest, Tom
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"Thanks for this!" says:
Addy (09-14-2010), Alffe (09-14-2010), barbo (09-14-2010), Mark56 (09-14-2010), Rrae (09-14-2010)