I'm tired of this #$%&-ing pain!!!!

[dejerine]

Arndog,

I was quite surprised by your post, since it seemed to indicate opiates could not reach the burning.. I had always assumed that opiates were of benefit for your burning dysesthesia. Would you be kind enough to indicate if opiates help the burning dysesthesia, or is it some other aspect of Central Pain which they help. If you would rather not comment in public, but still wish to comment, just PM me. Thanks

[dragon fly]

dejering,
Not that you asked me but I take opiates to calm my Central Pain of the electric shock variety. I don't have the burning dysesthesia that's been written about here. The opiates affect my pains subtlety maybe by sedating the Central Nervous System enough to slow and diminish the bolts of pain. Nothing removes them completely. Of course I'm getting tolerant of the drug and not willing to increase because of the side effects so I don't know where to go from here.

[arndog]

Dej, Patrick , Flying - I am "better" - it mysteriously went away in about 48 hours.
Dejerine - this was no ordinary burning dysesthesia which I have daily and which will respond to small amounts of opiates along with Lyrica.
This pain or nightmarish experience awoke me up out of sleep with someone sticking an ice pick in my sole and pulling back on it till it reached my heel. This cycled every 30 seconds and would last for 4 seconds. No med other than a general anesthetic would touch it. I did the best I could , knowing after 12 years of this bullshit, that it will go away some how. Just like we used to say " all bleeding stops eventually" This could be written "all pain will end eventually" - kind of a dark joke.

I went to work the next morning out of curiosity to see if I could concentrate through it and just to prove that it couldn't get the better of me. I wanted to establish who the boss is around here. It was a sucky day but I prevailed. I came home,poured a drink. and watched reruns of "breaking bad" on Netflixs.
Next morning it was all but gone.
Still no clue what caused it. I did reflexively started Macrobid antibiotic and I took out my foley which had been in for 3.5 weeks.. I think Bethany's F@@,F@itty, F@@ was what I was thinking.
Flying - I have no clue what caused that.

[dejerine]

Arndog , dragon

I have a theory, completely unproven, that all lancinating pain is evoked. This is just a theory, probably a wild one.

The reason I theorize this was because in me I have at all times hundreds of fasciculations going on in the muscles of my legs, lasting three to four seconds or more, usually not more than twenty minutes, to repeat later in the same or related areas. When the really hard lightning pains would hit, by careful watching, I would sometimes be able to identify the initation point as being a place of an unusually powerful fasciculation. (This constant muscle activity will drive you buggy if you let it) Most of the fasciculations cannot be seen but if one looks closely at any time it is possible to see them going on somewhere on my legs.

When I was hit with a powerful one, I could often get it to go away after a time by moving my leg, rubbing the area where it hit, or changing position. Periods of excitability were grouped. ie. My lancinating pains tended to come in groups, with them very bad for a few days or weeks, and then better and then bad again. This background is what made me think it is evoked. "Evoked by what?" is the sixty-four dollar question.

Lightning pains are clearly the most intense of the central pains and will make you exclaim from the suddenness, but it is one pain you can attack with the mind because it is not dysesthetic, ie. it seems like something familiar as opposed to the burning dysesthesia which is foreign, sinister, and "evil" right from the start. Dysesthetic burning is a pain Satan would invent, not bad enough to kill you, but bad enough that you cannot actually live. It is insane pain which is oblivious to everything else except itself and its own agonies. It ignores the rules of pain. It comes at you until it drills right through your personality and pays no attention to anything.

As you say Arndog, lancinating pains are something you can get tough with and show your stuff. However, the burning dysesthesia answers to nothing, listens to nothing, and monopolizes everything, without any regard for willpower. At least in me.

I tried to use TENS on the neck but I began to have lancinating pains in the face from it. Another reason I theorize it is evoked.

[dragon fly]

Dejerine, your theory is fascinating that lancinating pain is evoked. I’m going to carefully study my legs looking for fasciculations going on and the possibility of an initiation point. Maybe it’s in the same location as the thing that evokes the pain. At least I could rub my leg there. When you figure out what it's evoked by, will you let me know right away?

You say this pain is familiar, that you can attack it with the mind and get tough with it. Arndog established who was the boss. I don’t have this aggressive frame of mind - but I’d like to learn. It has to be more satisfying than my passive method of distraction and meditating. Can you tell me how to get mentally tough? Specifically how to “attack” the pain? It turns me into a wimp.

After reading the descriptions of burning dysesthesia I realize I don’t have it, condolences to all of you that do. This knowledge (that it could be a lot worse) has enlivened my energy for trying to out-think this GD pain rather than succumbing to its effects . Thanks for that.

[ketamine kitty]

Dejerine, holy crap batman!!! I neer knew the word fasciculations. I have had them non stop since my injury. they range from "dancing twitches" to stabbing nastises. I'd always referred to the as micro spasms. The dancing while constant always get worse berfore a major attack like 1/2 hour before. the attack can be either extreme lancinating pain pretty much right ther or grotesque vague 10+ pain in that entire leg to extreme spasms and muscle pain (in additions to the spasm pain.) However I detect no relationship to the electric shocks. nor do I have the fasciculations in my back where I also get extreme lancinating pain, collapse, lose bowel bladder, vomit exhibit sensory distortion. And this is very different that the mechanical nociceptive "evoked pain" in my back.

rubbing etc has had no effect positive or negative.

I so wish I had a neuro or medical background, I am analytical and science oriented physics EE while military and worked intelligence, but I' clueless about anything beyond setting broken bones cleanin wounds remoing shrapnel/bullets and sewing myself up. God what a waste of my talents.

Net I am interested in your evoked theorem, but there is no congruence to my personal experience. My doc said the miswiring causality of CP is so random that other than the generals eg dysthesesthia, dystonia, electric shocks the etiology is near random so extremely difficult to compare patients.

1 further comment. when you mentioned the time it takes to sort us out. My doc got me in Beth Israel for a week and in addition to her seld had all her residents explore what CP is and the was a not at the nurse station to call whomever was on when I had an episode so they could document it.

would love to have a chat someday with some of the CPs here. compare notes

bless us one and all

oh and my GP's assessment of CP if feels like it will ill you but unfortunately never will.

ket

[dejerine]

Ket

Hi

As always your posts are so dang good and so well thought out. Don't want to mislead you. My lancinating pains are almost always NOT associated with fasciculations, and would therefore normally be considered random. My question was whether they really are random. Fasciculations are what is thought of as being detectable, but I have so many that I suspect the vast majority of them cannot really be identified, so perhaps invisible fasciculations are linked to lightning pains. Just a thought. I am not advocating the idea. It is just that where I have been able to identify some initiating cause for a lancinating pain, which is very rarely, I have been able to see a more pronounced fasciculation.

If fasciculations are linked to motor phenomena pain, then presumably the pain would come via the muscle spindle, the so called fusofugal apparatus. Or in other words the sensory arm of the gamma motor system. If this is true, then it may be that meds that quiet the muscle spindle might diminish lancinating pain. Posting just for feedback here.

I cannot tell if the survey feature is still available here at Carecure or i would have put it in the form of a survey.

[arndog]

If I stare at my quad on the left, it has fasiculations, greater after heavy abuse - which is frequently. I hurt more then and it is exquisitely painful. No clue what the relationship would be to the fasciculation activity if any. Since I always hurt, it seems that the whole thing is impossible to figure out.

I am happy for good days and moments….

[smokymtn memories]

I notice the fasciculation activity in my right leg more often when I feel ill, or get cold, or have missed taking meds on time on a bad day.......I dread those days. Seems like everything is worse on those days, even b&b seems worse! Go figure.......

This weather is killing me, the day is shot and I have gotten nothing done. Just siting here drives me crazy! I'm use to getting up early in the morning and doing things......well, that use to be my life. Years later, and I'm still griping because those days are gone. The mind is willing, but the body is gone. Just enough left of it to get by and deal with pain. You can't get rid of it, nothing much helps, and the meds that do help me get by, are going to get harder and harder to get thanks to drug addicts. The government has no clue how to handle the problem, so they take it out on all of us. I can't help but wonder what will be next......their rules aren't getting rid of the bad doctors and patients and dealers and users........their rules hurt people like me. And good doctors that are now afraid, or unable due to rules to even treat you. Here in my state, you pretty much have to go to a pain clinic to get help. If you are a chronic pain sufferer, your family doctor isn't suppose to treat you long term. Then you have to worry about choosing the right clinic. I travel an hour and half to get to mine.....they have had them closer, but they come, and they go. It is too hard to start over, and over......my husband wants me to change to one closer to home. I would rather have the hassle of traveling, than switching clinics who knows how often! And God save me from the ones that always want to switch you to the new and improved meds! Been there, done that, and for me......it just doesn't work!

Arndog, I hope you're right and my rambling on here maybe can help someone new dealing with this pain. I know when I first started, I was terrified that it would never go away! And I was right, and wrong. Right that it was here to stay, and wrong that I couldn't deal with it. There are too many days that I would like to give up, but I don't. Maybe I'm just a coward, or maybe there is a part of me that still hopes for an answer to it all. I'd like to think it's because there is still a little bit of hope in there somewhere..............I think having my good friends here help me a great deal. I wish Penny was still here to put her two cents in!

[ketamine kitty]

cant fucking sleep pain, spasms, MRIs and spinal epis thursday. will likley stop my IT pump so a reboot scheduled as well. the train keeps on rollin but the wheels are slowin down weary, pain and depressed, and the fuckin weather is fucking killing me aarrgghhh

ket

[smokymtn memories]

I know what you mean about the weather Ket.......things are bad enough without the bad weather! Same today. Tomorrow is spring, but it looks more like a fall day with winter coming when I look out the window. I feel like it too. The spasms have been terrible this week. My right leg takes on a life of it's own with the jerking. I'm due for a new MRI, but have put off seeing the neuro surgeon.

I like the train keeps rollin' but the wheels are slowin' down.......it's how I feel most of the time. Good luck tomorrow Ket..........

[ketamine kitty]

Aaaaarrrgghhh

so fucking tired of the burning waist down, my fucking ass and legs, can't sit, lie down. standing hurts tis is fucking insane, I am losing my fucking mind. back to electric shocks virtually all day and the fucking spasms are getting worse? wtf, enough IT Baclofen to paralyze an elephant and I can't get an hours relief. Doc doing what she can, new MRIs trying to sort out what to do ...NAFT (not a fucking thing) anytime thye go in I come out worse. sorry the whine no sleep in a week and really in a world of hurt, I can't even concentrate enough to read a fucking bokk. back to puking from pain and sensory distortion.

If I went totally batshit crazy in public would they lock me up and shoot me full of thorazine till I was dazed and drooling and would it help?? or would I still be screaming in my head

I need some relief I'm spiraling into that very dark place again

seriously thuis is not possible I must be insane

[Jessicam14]

I see not much has changed for you Ket. I'm so sorry.

I haven't been on this site in forever, it just disappeared one day!!

[da lurker]

One can be a convicted bank robber, murderer, car thief, wife (husband) beater, rapists and still get medication for chronic neuropathic pain. Can scam old people out of their retirements and still get medication to treat chronic neuropathic pain. But smoke some marijuana and your medical treatment can be withheld.

Surely our surly, willy-nilly politicians can apply this deterrent (withholding medical treatments) to other serious violations like fishing without a license... or no hemorrhoid treatment for politicians convicted of any crimes of dishonesty.

[Freespin 71]

big weather changes lately has my pain burning on over drive... weather makes such a difference in my pain.. I feel people don't quite understand what burning hell on earth is like when i say to someone how much more i hurt with weather changes..