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Old 11-22-2010, 03:48 PM #1
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Default When You say Pain.......

When you people use the work "Pain" would you please describe the pain?
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Old 11-22-2010, 04:10 PM #2
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Burning, Numbness, boring bone pain, relentless , shocking type, spasms, sensory stuff, things feel cold when there not, a breeze brings on intense pain to the part of the body that the breeze is blowing on, or it might send the whole body into spasms, for everyone its different,, some find it tolerable and others are ready to take the bridge becasue it never lets up,, you go to bed with it and wake up with it,,and each day brings its on challenges
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Old 11-22-2010, 05:50 PM #3
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Originally Posted by Feel the Burn View Post
Burning, Numbness, boring bone pain, relentless , shocking type, spasms, sensory stuff, things feel cold when there not, a breeze brings on intense pain to the part of the body that the breeze is blowing on, or it might send the whole body into spasms, for everyone its different,, some find it tolerable and others are ready to take the bridge becasue it never lets up,, you go to bed with it and wake up with it,,and each day brings its on challenges
So eloquently put, this describes me to perfection although my pain is confined to the lower calves and feet and breezes dont bother me - everything else describes me - I hate waking in the morning and for a split second you dont feel it and then it comes crashing down on you BANG - it has started again! Sure this disease is horrible....
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Old 11-22-2010, 06:32 PM #4
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Default Ahh. Describing IT

Let's stick these limbs in boiling oil! yep..
Let's plug them into this outlet! yep..
Let's stick them into the freezer! yep..
Let's suck the bone marrow out of them SLOWLY! yep..
Let's go find the saw in the basement and cut it out? - nope, can't get down the stairs w/o falling.
At the Neuro's office: Close your eyes and stand! - Only if you can catch me! Oops? Ya didn't!
There are meds that can help, and supplements that help too. But, be careful with each and every one of them! Go slowly and learn about the meds etc. They come with some consequences such as 'bone loss' for the anti-seizure meds... [been there, done that]
Best thing is to get your diet and metabolism in it's best shape? And try and get off as many meds as you can survive with. If the pain is such you can't do complete sentences? Problem..try out different meds. If the pain is the same when on the meds? Try out different options.
Be sure about your PAIN! here is a pain scale to help you 'try' to be objective:
http://en.wikipedia.org/wiki/McGill_Pain_Questionnaire Go down and look at the 'pain survey' - it asks questions about each type of pain in detail...
First get that pain in control...then diagnosed properly ... then deal with whether being on pain meds is worth it or not. Rite now? I have an immune therapy for my immune-mediated neuropathy[ies] and I try to only take pain meds WHEN ABSOLUTELY POSITIVELY NEEDED! I consider myself lucky? Tho I am in pain always. But it's not disabling to the point where I can't type a complete sentence! Also? Be aware that pain meds? Don't always take away ALL the pain? You're still gonna feel something. But, if your meds make you so muzzy you don't care? It's a warning bell for me, don't know about you.
Hope and hugs-!!! - j
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Old 11-22-2010, 08:21 PM #5
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Burning, prickly, itchy, electric shocks, deep muscle ache, deep bone pain, feels like someone poured gas on me and set me on fire. Muscle twitches too. All this is all over body, from head to toes. But worse on face and feet. Pain is 24/7. With no meds pain level is 9, with 150 mg. Lyrica a day pain is 2-4. I have yet to have a full relief with meds....but still hoping.

My opinion is that you should take the meds you need to get enough relief to live and function in a normal life. If you get dependant upon them, so what, because what kind of normal life can we lead if we are a level 9 pain all the time. That is not a functional life. Nobody can be a good person, wife, husband, mother, employee, etc...if they are in so much pain they can't function. But of course, be aware of side effects, and remember that not everyone get the same side effects. So we all must do what is best for us, and no guilt about it.
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"Thanks for this!" says:
fabdou (11-27-2010), malawigirl08 (12-17-2010)
Old 11-22-2010, 09:55 PM #6
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Default I totally agree....

Quote:
Originally Posted by rose_thorn98 View Post
Burning, prickly, itchy, electric shocks, deep muscle ache, deep bone pain, feels like someone poured gas on me and set me on fire. Muscle twitches too. All this is all over body, from head to toes. But worse on face and feet. Pain is 24/7. With no meds pain level is 9, with 150 mg. Lyrica a day pain is 2-4. I have yet to have a full relief with meds....but still hoping.

My opinion is that you should take the meds you need to get enough relief to live and function in a normal life. If you get dependant upon them, so what, because what kind of normal life can we lead if we are a level 9 pain all the time. That is not a functional life. Nobody can be a good person, wife, husband, mother, employee, etc...if they are in so much pain they can't function. But of course, be aware of side effects, and remember that not everyone get the same side effects. So we all must do what is best for us, and no guilt about it.
I am not at all afraid of getting dependent on a drug, I just said those words to someone the other day. Quality of life is much more important, I want to be and feel myself as much as I can.

I have everything you named except muscle and bone pain. I do get the twitches, but not as much as I used to. I also get a feeling like water is being splashed on me. Mine too is every second of the day, I believe it must stop when I sleep though, I am a light sleeper and I am not awakened by any sensations. With the 1200 mg. of Gabapentin instead of a sensation every second of the day, I feel about 20-25 a day. A big difference! The side effect is weight gain for me (why couldn't it be weight loss, I may have been happy about this mystery disease.......lol!)
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Old 11-23-2010, 11:10 PM #7
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Default Pain

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Originally Posted by invisable View Post
When you people use the work "Pain" would you please describe the pain?
I am a type 1 insulin dependent diabetic going on 40 years with it now. I have PN in my feet, toes, hands, fingers. I also have autonamic neuropathy causing severe gastro problems, Focal neuropathy that generates in my thigh and throbs constantly. Now my skin from my stomach to my mid thigh and my sides is EXTREMELY sensitive. Like a bad steam burn. It plain hurts to have anything, even soft, touch it. I cringe when my eight year old hugs me around my lower waist. Nothing reduces this feeling. My doctor says it is the PN and he can increase my Cymbalta. (I am on 60mg)

My feet used to feel like I was walking on rocks and now my left foot feels like I am walking on a huge wad of bubblegum. It is a very disturbing numbness.
I want to know if anyone has had the skin pain and if they found anything to help it. This symptom is new to me and I really am bothered by it.
I had a surgery in my hand to cover the nerve with a sheath and I can now use my left hand but the doctor doesn't have answers for me for this extreme sensitivity on my skin.

Any ideas?
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Old 11-23-2010, 11:28 PM #8
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Quote:
Originally Posted by blackgrapes View Post
I am a type 1 insulin dependent diabetic going on 40 years with it now. I have PN in my feet, toes, hands, fingers. I also have autonamic neuropathy causing severe gastro problems, Focal neuropathy that generates in my thigh and throbs constantly. Now my skin from my stomach to my mid thigh and my sides is EXTREMELY sensitive. Like a bad steam burn. It plain hurts to have anything, even soft, touch it. I cringe when my eight year old hugs me around my lower waist. Nothing reduces this feeling. My doctor says it is the PN and he can increase my Cymbalta. (I am on 60mg)

My feet used to feel like I was walking on rocks and now my left foot feels like I am walking on a huge wad of bubblegum. It is a very disturbing numbness.
I want to know if anyone has had the skin pain and if they found anything to help it. This symptom is new to me and I really am bothered by it.
I had a surgery in my hand to cover the nerve with a sheath and I can now use my left hand but the doctor doesn't have answers for me for this extreme sensitivity on my skin.

Any ideas?

Could it be RSD/CRPS? To read about it on our forum -
Reflex Sympathetic Dystrophy (RSD and CRPS)
Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)
http://neurotalk.psychcentral.com/forum21.html
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Old 11-24-2010, 12:42 AM #9
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Default Pain pathways

The movie "What the Bleep Do We Know" shows in easy to understand terms how neuropathways form and can make the pain worse or even still there when the cause is removed (such as fantom limb pain). I highly suggest this movie to anyone who wants to know about the newest science in an easy to understand presentation.
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