[Alkymst]

Just thought I'd let people know that I haven't posted much since my recent changes in job status which have really aggravated my PN - well beyond anything I have experienced before. In any case I managed to get an appt at John's Hopkins in the near future to see if anything else is going on or if they can give me some more definitive idea of the cause for my PN or if it's just a case of more of the same - I've run out of creative descriptors for Drs and people to describe the feelings and the pain - as I'm sure many, many others know all too well.

Alkymst

[Silverlady]

I'm so glad to hear from you and so sorry you are suffering so. When is the appt. at Hopkins for you?

Maybe a search for others descriptions of their pain. Or maybe start a new thread and ask for others description.

Good luck to you.

Billye

[shiney sue]

Hope things get better,and sorry for your pain,please don't go away
forever...Sue

[Brian]

Hi Alkymst, yeah sorry to read you are suffering so much mate, just a couple of thoughts that come to mind, i noticed that just a little stress can aggravate the heck out of PN & nerve's repairing isn't that flash either and can go on for some time too, also i found that i built up some tolerance for pain meds after some time and i was thinking the PN was getting worse but when i backed off the drug for a little while and then went back on the original strength, it worked much better, or perhaps your doc can adjust your meds to be more suitable for your current situation, i hope it settles down for you soon.

Brian

[dahlek]

whe all have to or SHOULD participate in some huge pain description WORD analology game? I sure think that would/could be a productive exercise IF all veterans middling and NEW folks participated!

I say that because we each 'use' words differently tho often for similar or more devastaing pains as we go thru the pain MILL.

So one and all...Why not use a quick post to describe the TEN most apt words to describe what you experience? Call it a challenge?

Alkymst....does this mean that you are 'going' off line for a period of 'economic' need? Or just busy doing the 'job-hunting' stuff? I certainly hope that it IS the latter. Also, going to Hopkins shows signs of 'hope'...While I think Lalavia may have some reservations, they've not given up on her yet. Bob B has high praise and I would have gone there myself had I not gotten an appt with the Georgetown U Neuro dept head 3 weeks ahead of the Hopkins one. G'town was on target for me and the whole diagnostic process thru them and locallaly was flawless. I truly wish others [such as YOU] can be as lucky!

OK MY DESCRIPTIONS: Grinding-pressing squashing of the bones and any nerve ending. The 'thawing from almost frost-bite' sensation. The deadness one 'feels' or not, after a leg/foot falls asleep and starts to wake up..only it never ENDSSS. The sensation of being thrown into a vat of hot french-fry oil and coming out...I believe that is the 'first degree burn' feeling...? right before it goes all dead? [or, is it the other way-round?] The cast in concrete now setting sensation. The bamboo probes being stuck up the toenails then plugged into an electric socket to get the 'jolt'. Lastly the walking on 'bubble wrap with a layer of 'fish-tank' gravel in-between... That is ten, I believe, depends on how you count. The absence of pain can be as much of a concern as the pain? Maybe later good person. - j

[Silverlady]

1. Bone deep cold with chills starting in the legs going all the way to my neck.

2. Burning that feels as if the skin was clawed off a terrible sunburn.

3. Legs and feet feeling as if they are swollen badly when they aren't. It feels as if the skin will burst. My spine feels as if it's being crushed. The longer I stand up the worse the crushing is.

4. Fingers typing words I don't spell. Words I don't even know. (They miss keys when I KNOW I've spelled the word out in my head to type it.) Dropping everything.

5. Heat and cold are actually painful. My husband has to get my oatmeal out of the microwave because 2 min of heating oatmeal makes the bowl too hot for me. It actually hurts. He can pick it up with ease.

6. The sweating when I'm freezing cold to the touch.

7. A feeling like there is an actual electric shock running down my leg.

8. Itching and bites when there are no bites.

9. Ear turning bright red and burning everytime you get warm . (Redness is visible and it burns)

10. Water pouring over my lower body. Clothes and sheets HURT!


I definitely used more than 10 words. Maybe printing these off for your neuro would be a good way of describing if you are suffering the same way.

Billye

[MelodyL]

After reading what the two of you wrote, I have nothing to say.

You people are going through stuff, well, maybe Alan knows what you are going through, but me?? I'm keeping my mouth shut. My discomfort is nothing compared to what most of you go through.

I give you people all the credit in the world, and believe me, you are in my thoughts all the time.

I'll just go put an ice pack on my knee!!!!

Melody

[dahlek]

Very, VERY smart move. - j

I have, only in the last 3 months or so, begun to really experience sweating in any semi-normal sense. Gotta tell you it is both a blessing and a curse? Kind of like going thru menopause all over again, tho I know it aint' so!

[fanfaire]

Here are some I've actually told to doctors, and others that I should mention to them:

1. Someone trying to take off the end of my big toe with a can opener.

2. Being hit by lightning. In multiple body parts in rapid sequence.

3. Sensation of splinters under the skin, but no foreign object present to cause this feeling.

4. Sensation of having walked through a cobweb, but nothing is actually touching my skin. This generally progresses to feeling as though spiders are crawling on me.

5. When I first step into the heated pool for exercise, my hands and feet burn as though I'd stuck them in a George Foreman grill (which heats on two sides simultaneously).

6. Heaviness in my chest akin to an elephant sitting on it.

7. Awkwardness of movement as though I were a marionette and someone I couldn't see was the puppeteer.

8. Oncoming headlights when I'm driving at night produce stabbing pain in my eyes like ice picks.

9. Nightmares about demons ripping apart my body only to awake and discover that the dream was fake but the pain sensation was real.

10. Fatigue that is actually physically painful, as though someone had come up to me and smacked my brain with a sledgehammer.

Well, THAT was cathartic.

fanfaire

[Yorkiemom]

I think I will have to vote with Melody on this one. From what you all have posted, it makes me feel frustrated that there doesn't seem to be any way to help relieve your suffering... It saddens me to see that my online friends experience life like this. I wish so much that there was an answer for this.

Your pain descriptions are very real to me, because of the examples you use to describe how you experience your pain. To me, this gives meaning to your written word and I can imagine how this must feel. Unfortunately, I find most doctors can't seem to identify with the examples... I find the "mask" goes up...

Cathie