the strange sensations of CP

[alan]

It's amazing what strange sensations central pain can cause. Red-hot burning that feels wet at the same time. Broken bones that stick through skin. Skin scraped off. Appendages stuck together. Electrical shocks. Heaviness. Cramping. Ripping skin and muscles. And many more, all at the same time. Nerves are funky things.

Alan

There's a fungus among us, and I'm not lichen it!

[metronycguy]

yes i agree, i remember some nights and days waiting for the breakthrough meds to take effect how to verbalize the sensations i was feeling so i could explain them to the doctors. i though the weirdest were the feeling of my big toe and rest of toes being separated and ripped apart.
last week i awoke at 7am to the feeling my big toe was being smashed with a jack hammer, weird how i could be asleep like that lying down and get this 8 on the pain square out of nowhere.
fortunately it didnt last to long, 1 minute here a minute there, squares me though i remember when these attacks would last for constant hours, and i had to wait for the breakthrough meds to hopefully work, usually had to increase the doses higher too,
reminds me i need to become a criminal and get some reeefer to help with these attacks

[dejerine]

I can't believe you guys expect me to believe all these weirdo CP sensations. Fortunately for you, I have them myself. LOL
Keep going guys.

[This message was edited by dejerine on 01-21-05 at 02:00 PM.]

[metronycguy]

in the rsd and pain forums i keep seeing a lot of postings about something called TOS causing burning pain,pain and spasms

[dejerine]

Metro,

Thoracic Outlet Syndrome is supposedly from nerve/vessel compression in the low neck, upper chest. If so, it is peripheral nerve pain and not central pain. I do not know if any hypersensitization is involved so do not know if it is neuropathic, but from what you say it sounds like it.

[metronycguy]

dejerine , i was looking for some other stuff on brain talk i found the TOS information, it seems a lot of the peple were gettng burning and other symptoms that sounded very familiar to Alans shoulder blade popping and upper body pain , i wonder if its possible for some to have developed TOS years after original their original injury..from posture or ?

[alan]

I check out that TOS forum (and several others there.) I figure you never know where you might pick up helpful info.

Alan

There's a fungus among us, and I'm not lichen it!

[alan]

Congratulate me - my right shoulder blade has gotten as bad as the left! Now I feel like I have two huge skinned lumps, to go with my skinned permacramped abdomen and the rest of my skinned, alcohol, doused body. I can barely use my arms, because of the ripping skin sensation and rubbing bones that occur with even the slightest movement.

I love this shit. Fidgeting every few seconds to (vainly) try to loosen up my back and sit straight. Inability to concentrate on anything for more than a few seconds at a time before the pain requires a move. What a fun life. And the nights are really great. And I feel like such a wimp, especially seeing all the quads here who are very independent, live alone, work, etc., while I sit here and complain. At least the folks in this forum understand - nobody else without similar sensations seems to.

[This message was edited by alan on 03-05-05 at 08:09 PM.]

[Mcguive7]

I don't have central pain, and I don't really know anything about it now. I'd like to understand it more. As a recently injured para, I've got my fair share of pains to complain about, but I don't think it's much like what you've described.

Are these sensations occuring all the time? 8/10 on the pain scale for real? How do you manage? Meds? Meditation? Screaming?

I'd like to hear anything you have to say, and am more than happy to listen to any venting. You've got my respect and empathy for dealing with something I doubt I would be able to.

T8 Incomplete

[Obieone]

Alan ... I wish so much I could ease your pain ... http://sci.rutgers.edu/forum/images/smilies/frown.gif ... I still see that gnarly old magnificent tree ... it will soon be budding out in the perfect green of spring .. thank god for the change of seasons .. it continues to give me hope http://sci.rutgers.edu/forum/images/smilies/smile.gif .. for us all ... hang in ...

Obieone http://sci.rutgers.edu/forum/images/smilies/cool.gif

[alan]

Mickey,

Check out painonline.org and painonline.com. Both are excellent sources (my file is on the latter site as "Reality CP.")

The sensations are 24/7, and (to me) most passed 10 long ago (I posted a pain scale here a while back - a search should find it.) There are so many different sensations, it's impossible to list them all, and even harder to describe them. Some are listed in the opening of this thread.

So far, meds have been either ineffective or had side effects I couldn't handle. I don't scream well, so I whistle instead (like a teapot letting off steam.)

Obieone,

I know spring is on the way. Even that's depressing me - I at least want to be able to get around my neighborhood once the weather warms up, but, thanks to the back pain and posture, I can't drive my chair much any more, even just to my living room. It's amazing how important shoulder blades and the upper back are to arm movement.

Maybe after 23 years, the hole in my cord has decided to make like the budget deficit and grow?

Alan

There's a fungus among us, and I'm not lichen it!

Nerve Center Telnet BBS - tncbbs.no-ip.com

[alan]

I feel twisted like a corkscrew, too, but that's due to the scoliosis. It makes sitting, and reaching things (like my keyboard, and my plate), very difficult.

Alan

There's a fungus among us, and I'm not lichen it!

Nerve Center Telnet BBS - tncbbs.no-ip.com

[Tim C.]

Alan, your description of your painis disturbingly similar to many symptoms I suffer. Although it's comforting to find someone else existing out there who understands my agony to be real, and maybe I'm not imagining it as I sometimes think myself, I must express my regret that this hell extends beyond me in the first place.
The dilemma is what we can do to keep it from defeating our effort to maintain ourselves until better days of sci cure arrive. If I allow the pain to win, I will losing both physical and physcological grip. My solace is found in the strongest of painkillers, or as I am told they are (?). This then, sets the basis for initiating the next logical thread topic:
WHICH PAINKILLER(S) DO YOU USE, AND WHY?

[alan]

I freely admit it - I've been beaten down by the pains. I don't like it, but it's true. I tried fighting it for years, but there's only so much one can do. My ability to do physical activity is shot (even this is a struggle), I can't concentrate on anything, and I can barely tolerate passive range of motion (let alone moving in the chair or van.) It's torture siting or laying down, and a treatment is way overdue.

If I could find a med or meds that helped, and/or didn't have problematic side effects, I'd be taking them and telling you all.

Alan

There's a fungus among us, and I'm not lichen it!

Nerve Center Telnet BBS - tncbbs.no-ip.com

[This message was edited by alan on 03-15-05 at 08:47 PM.]

[afkap]

Along with you and Tim C., I have the same inability to describe the strange sensations of unrelenting central pain. Often, it is just "otherworldly." I use Neurontin, 4-Aminopyridine, Dextromethorphan, Tizanidine, Lamictal, Duragesic, Roxycodone, and Actiq. I am in constant excruciating pain, but worse without all that. I've used Elavil, Topamax, and a few other medications mentioned by others on this website, but overall, nothing really provides significant relief. I meditate frequently, try to minimize sensory input (noise, light, motion) and watch lots of DVDs for distraction when I am up all night.

[alan]

I'd at least like to reduce the feeling of tightness/cramping and skin-ripping, as well as stop my bones from rubbing.

Alan

There's a fungus among us, and I'm not lichen it!

Nerve Center Telnet BBS - tncbbs.no-ip.com

[metronycguy]

m2a2 how much dextromethophan?

[afkap]

20 mg dextromethorphan 6x per day