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Living with cervical myelopothy, My store- Am I the only one???

jj-from montrealjjj-from montreal Posts: 60
edited 06/11/2012 - 8:24 AM in Chronic Pain
I have cervical myelopothy C5/6
On an average day my pain levels never go below 6, when I experience a flair up usually its 8- to 10 , and the flair ups can last for weeks until it subsides,

I’m constantly dropping thing, all glass ware in my house was changed to plastic, I have ceramic floors.. I have no feeling in my hands; I can feel pressure, but no sensation. In other words I can not tell if I’m touching sand paper or concrete, and touching steel is very unpleasent.My right side has been most affected. I can still use my arms and fingers I just got to focus on the task on hand. I learned to compensate, by applying thought and patients, relearning tasks that healthy people take for granted.
I will give you a prime example; a typical day , I make my self a mug of hot coffee, I hold it in my right hand (I’m right handed) as long as I’m mentally aware that the mug is in my hands everything appears normal the second the phone rings and my concentration is broken ,another one bites the dust,
I find it amazing how the human body can adapt to changes. I had to re learn just about everything, I always must be aware of my present surroundings. My physical situation does not compare, pain wise, to my skin sensation. With out medication, touching any thing is quit unpleasent some time down right painfull,
I can say this is the most debilitating for me,
This is the reason I have such trouble describing my pain to some one:
My neck/head/shoulder blade area –burning, itchy pins and needles, always stiff and a dole soreness, but constant. most of the time not bad enough to incapacitate me but bad enough to drive me nuts, then there is my right fore arms, in a flair up situation I’m convinced its going to explode just below the elbow, this pain usually radiates to my fingers which are constantly stiff and pain full but still usable.
Then there are my legs. Extreme itchy, burning, ants crawling, those pesky shooting pains which usually hit with out warning; sharp stabbing pains in my ankles and feet mostly. This lasts maybe a few seconds, boy do they hurt. My legs are wobbly , they work but not like most peoples, once again I have to focus on my stride. When I walk my right leg has a tendency to drag a bit. Two winters ago I was walking on ice and some one blew their car horn behind me before I new it I was in the hospital with a spiral a tibia fracture.
And for the icing on the cake these nasty muscle spasms

My neurologist tells me that most of the sensations I’m experiencing is caused by the myelopothy sending wrong signals to the brain,

In other words its all in my head?

I still love life
jj


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A little back ground;
I’m a 48yrs old male, I have moderate to severe chronic pain everyday of my life for the past10 years,
I was diagnosed with, sever stinosis in the neck, severe D.D.D ,
At 37 I had to have a lamanectomy from C3 to C7 inclusive, do to herniated disc, and myelopathy affecting my spinal cord. The doctors have made it very clear ; there is real nothing left to try, medically. Also the same goes for the pain situation aswell.Which means this is it…..
Presently I can not feel with my hands, no sensation, I have pain from my head to my toes. I have been on every type of pain medication and all stopped working after a while
Now I take Lyrica and and medical marijuana
(My advice to the world ,” acceptance, never give up, keep your self occupied . get physiological help, just to put things into prospective. Try to smile)
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Comments

  • My heart goes out to you and I wish that you don't have to suffer like this. I'm feel so bad for you >:D<
    I don't have myelopathy, but suffer from a list of other problems. I think Paul has something similar; his username is Paulgia and you can PM him about this. I wish I could be of more help. Take care of yourself, and we're here for you.
  • We've spoken before. It is NOT all in your head. The symptoms you just described could have been written by myself, and I'm sure others with myelopathy would say the same thing. Just wanted to say hang in there. I was actually contemplating posting an update on me and describing what I feel day to day, but you just said it all for me. We're in this together, and we're not alone. It may not get better, but it will get easier! One day someone will invent a way to do spinal cord transplants, and you and I can be the first two on the waiting list. Until then, come on in chat some time late nights and we can commiserate together. Sorry for your pain today.
    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I too have myelopathy and know hard it is to live with. In the beginning I fell a LOT because I had no reflexes on one side and hyper-reflexia on the other. One leg was dragging and the other was rarin to go!

    This may be a silly question but have you had more than one surgical consult? If not, I would do that, you never know. Neuro-medicine evolves rapidly and what wasn't possible a few years ago is common today.

    Like you and Cindy, I've found that adaptation is the key to accepting this new, screwy body that I've been forced into. My myelopathy has caused most of the muscles in my upper body to atrophy, which has been the hardest thing for me. I was a strong woman and very physically active. Although this condition is different for each of us the common thread is that we each have little hope of reversing the damage that is already done. However, I still fight every day to avoid losing more function! I simply refuse to give up....LOL

    Hang in there and keep talking about it. There are a lot of folks here with experience with this condition that can offer advise and, more importantly, support. Cindy can tell you that she has been a sounding board for me quite often...she's a wise one.

    All the best to you,

    Griff
  • i definately know what you are talking about J.J. . I too suffer from the neck,head,shoulder, scapula area. the pains stabbing me out of nowhere in feet, in middle of back, and arms. the muscle spams, and the pain in my fingers in quite painful, and is more frequent lately, and the pains in my toes, and numbness. those creepy crawling bugs also! i walk with a limp also. and i too am stiff and sore. ~X( as far as feeling, my problem is weakness, i can tell you about my coffee mugs. I cannot pick mine up without weakness, and radiating pain in my arm, and shooting up to my neck. p.t. is supposed to be helping me with strengthing but so far have not noticed any difference. i see you have had surgery at c5/c6 levels. that is where my main levels are also. my ROM is terrible, i live it from day to day, and it is all you can think about. i just want it to go away. i wish you well J.J. everyone is just great on this forum. i do not know what i would do with them to relate to. 8> always LEO
  • I only had to drop one coffee cup and I had one other strange sensation. I left like I was falling out of chairs. I would literally grab the arm of the chair to keep from falling. Oh and I had all the tinging numbness and all of the obvious other myeolopathy effects. I had C5/C6 done within a week of diagnosis. I guess I don't understand why doctors wait so long when they know what's going on. Was I one of the lucky ones? Mine was due to trauma. Was that the difference? The more I read the more I am intrigued by all of this. I just can't believe that doctors put patients through the wringer when they know all along what the ultimate diagnoses are. Muscle atrophy being one of the worst outcomes. How does it get to this? I'm going to be doing tons of homework for a long time I guess to try to make sense of all of this.
  • Fibro my alga and cervical mylopothy share many similar symptoms. I actually had the pleasure of meeting people with fibro my alga, when they describe their moans & groans to me. It’s as if they are describing me. So all you fibro people out there, I can relate!
  • welcome to spine health. do u have an additional surgery date? i am sorry that u are having to go through this. neck of steel is correct and i can relate also. on a lighter note about your pain meds, do u get the munchies =)) =)) =)) =)) . i wish u goodhealth and i also will say a pray for u.
  • No on the munchies, and I hate to say it nada on the intoxication part also. How ever you got to understand “it”is not used for entertainment any more. I had really no choice. The last narcotic I was on was 165mg of methadon, (the same stuff they give heroin addicts) my body was screaming for mercy. Over a ten year period taking one narcotic after another, tightreighting up weaning off, up and down. The side effects were becoming a bigger problem then my actual pain.
    Personally there is no different between taking a pill or taking a few puffs, simply a delivery system.
    My wish one day: is for science to duplicate all the good stuff that’s in "medical grade pot" and put it in a pill, I would switch in a heart beat. I stopped smoking around two yrs ago, pot dos not trigger cigarette cravings. For now, this is what is offered to me, and I must say its working out better.(for now)
    Keep smiling
    JJ
  • there are quite a few spineys that are on methodone for long term pain med, and u r right when it comes to a change of meds, they must slowly wean off before starting a different med. i guess i am wrong but i thought they already had a sinthetic form that was either a liquid or pill form??? btw are there any surgeries for u in the future to help or have they done what they can for you??
  • there is nothing they or anybody else can do to fix my problem. This is it :>)

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