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

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Chronic Pain
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Posted 10/31/2008 6:05 PM (GMT 0)
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. I can describe this as 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. Two winters ago I was walking on ice and some one blow there 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,     I still love life jj     -------------------------------------------------------------------------------------------------------- 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 i n 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 )
Posted 10/31/2008 8:13 PM (GMT 0)
Hi JJ,

 

This is my first posting in this forum. I"m a regular on many of the other ones here.... I can, in some ways, relate to what you are going through!  I also have DDD in my neck.  C3, 4, 6, 7.  I also have arthritis in my lower back.  I'm 34 years old.  DDD runs in my family, but I've had a few car accidents, skiing falls, etc, that have contributed to the degeneration.  What also plays a major roll in my pain and sensation problems is that I have Lupus and Fibromyalgia. Fantastic mix of pain! (major sarcasm)

 

I get pins and needles, numbness - sometimes very severe, in my arms, hands, legs and feet. It does make me clumsy, and I drop things regularly.  When my neck is really bad, the pain is a 10+. I ususally spend the days/nights in tears....  So I can relate completely to your pain problems.  Shoulder checking while driving is impossible! I also get nasty muscle spasms. In fact I just posted a thread on the Fibromyalgia forum about them!! 

 

You mentioned that in your legs you get the extreme itching, burning, ants crawling, shooting pains.  I get those too! The ants crawling sensation is awful.  For me, those symptoms are my fibromyalgia!  I also get the shooting pains in my ankles, and pretty much every single joint in my body. Again, fibromyalgia. 

 

So no, you're not alone. The diseases are different, but we get the same or similar symptoms. dealing with neck pain is one of the most difficult things in the world to cope with. I'm still trying to find ways to manage it all.  ONe thing that has worked for me is physical therapy that includes ultrasound, electrical stimulation and some light massage.  I wish I had more to offer you in the way of advice or ideas.  I need help too!

 

How are the lyrica and medicinal mari working for you?  Those are fibromyalgia treatments too.  I'm trying Neurontin. We'll see how that works.

 

Keep enjoying life JJ!  Talk soon,

Ginny (I'm in Alberta!)

Posted 11/3/2008 10:31 AM (GMT 0)
jj --
I think I have Cervical Myelopathy and my pain levels are extremely high. My pain never
goes away unless I sleep. Pain like that is called Intractible Chronic Pain. I've read It's one in one thousand.
I have so many things wrong with my back, neck, and arms. There's always a different sensation
of pain. My feelings of pain have not been like yours.
I don't think my post has been helpful. What I want to say is ... I hope you have a good day and
evening.
Pamela Pain
Posted 11/4/2008 7:29 AM (GMT 0)
I haven't been diagnosed yet but I also suffer every day. I have parasthesia in all 4 limbs. I experience tingling, numbing, pins and needles and burning. I cry all the time because I don't know what is wrong. I have been to 2 neurologists. The 1st did a nerve conduction test which he said was normal. He didn't want to do anymore testing after that. I had previously been on cymbalta for many years and had gotten off the meds and a month later my symptoms started. So in the docs mind he thought my symptoms were psychosomatic and told me to get back on cymbalta. I didn't want to so he prescribed neurontin at 300mg. I made an appt. with a 2nd neurologist and he is sending me for an MRI of the brain. Appt is Saturday. I am now on 600 mg of neurontin but still not helping enough if it will even help at all. Want to go to 900 to see if that is better. I am so scared because I don't know what is wrong. I just want relief from this. This started 4 months ago and started as tingling and progressed fairly quickly. I just want my life back.
Posted 11/4/2008 5:27 PM (GMT 0)
Dear Lois22lane,
You may want to reconsider the cymbalta. It's not just an anti-depressant, but it also helps with nerve pain, with fewer side effects than the neurontin. it may have been masking your symptoms for awhile, until you stopped taking it, but that means it was working. It does NOT mean that it's all in your head or that your doctor thinks that (unless he said those words). Depression is also part of chronic pain for physical reasons, so the cymbalta can kill two birds with one stone, so to speak, if it works for you. And it may have been working.

I'm not a doctor, but just thought you might want to rethink this and discuss it with your doctor.

PaLady
Posted 11/4/2008 5:35 PM (GMT 0)
Neurontin helps my nerve pain most of the time. cymbalta had the opposite affect on me it made me moody it didnt calm me down and it didnt help my nerve pain at all.
Posted 11/4/2008 5:39 PM (GMT 0)
Everyone's different, Kara. I'm just telling you what the medication can do for some people. Cymbalta helped the parasthesia in my feet, but I had to d/c it because if one bad side effect related to another medical condition. Based on what Lois said, it may have been working for her.

Neurontin or lyrica also help with nerve pain, but not with depression. And the neurontin probably has more side effects than cymbalta; I know, I take it. But it does help the nerve pain.

PaLady
Posted 11/4/2008 8:52 PM (GMT 0)

Hi JJ

Have you investigated Myofacial Pain Syndrome.

I also have neuropathy in my arms and hands from DDD.

Also have had laminectomy and a fusion.

Was unable to function well at all and no work until

I was diagnosed with MFS

I now have stretches etc and see an Osteopath biweekly.

I am able to work! !  It is painful but I do it.

I also take Neurontin and it helps the heavy tingle,pain

and numbness in arms and hands.

Please look into MFP and try to find a Doctor of Osteopathy.

Called Dr in US but only Osteopaths in Canada.

Bonnie

Posted 11/5/2008 7:24 PM (GMT 0)
Hi JJ, I am sorry for the pain that you are having. I know it can feel like sometimes theres no hope of feeling better. I have nerve damage, pretty severly, in my legs/feet/toes & also in my neck/shoulders/arms/fingers- though its not as bad as my legs, thankfully. I also take Lyrica 100 mg 3xs a day along with Cymbalta 60mg 2xs a day. Once I stared taking Cymbalta.... the pins & needles feeling almost left completly! And are you on anything for ER (extended release) Sorry I don't know a lot about the marijuana. I hope it helps some though. Unfortunatly, there isn't a lot yet for fibromyalgia, I have it as well, so s understand your pain. Some days just serioulsly hurt. John Hopkins has a pretty good study on it. I am on their mailing I hope this finds you a little better than before. ((hugs))
p.s....... try stretching out in the pool or bath tub. thats what i do cause it dosen't hurt as much & my hands/feet/joints don't get too stiff. Take care!!!!
Posted 11/7/2008 7:34 AM (GMT 0)
I had more side effects on cymbalta than I do on gabapentin. I am now on 900 mg of gabapentin so we shall see if this works. I had been on a low dose of cymbalta for many months before I stopped taking it altogether. I was on 30mg a day and then I alternated between 30 mg and 20 mg and then just stopped. Side effects of cymbalta even on a low dose were memory problems, paranoia, impulsive.....and also I still was depressed on cymbalta. When I would get myself worked up and cry a lot I would always feel so sick the next day. My head would feel wierd and would take a whole day for the feeling to go away. Oh and it also made me tired. Not as tired as gabapentin makes me though. I am almost considering trying cymbalta again but I am scared to go back on it. If I knew for sure the med would make my parasthesia go away then I would do it in a heartbeat I am just not so sure it will fix this. My husband thinks the med caused this in that it blocked my nerves from feeling for so long and now the feeling has come back but in a bad way. Not sure if that makes sense or if I am explaining that right. I really wish I knew what this was. I get so depressed because I remember what it was like to feel ok and be normal and now I just feel so hopeless. I hope my new neurologist will continue to test me for things so we can hopefully diagnose this. I a pro is that my nerve conduction was normal. My MRI is Saturday so we shall see how that goes. I also have something wrong with my bladder...I have pressure. No pain though and it isn't a bladder infection. I went to the Urologist and he did a test where he put in a catheter and filled with water and he said my bladder function was normal. He can do another test called a cystoscopy but I am not sure if I want more testing. The 1st test was bad enough and was having bad panic during the test. Also, I started getting back pains a few days ago. Not entirely sure it isn't a kidney stone as I had one many yrs ago but again I am not sure. When it rains it pours it seems. I am either being punished for something I had done in my life or I am being tested. Either way I just want to be healthy again. I hope that time comes soon because this has been really hard. Last 4 months have been the worst in my life. I grew up with a verbally abusive father but I would take that again any day over this.
Posted 11/7/2008 10:18 AM (GMT 0)
Lois ...
I had a Cystoscopy. I was really afraid. I kept getting some kind of TERRIBLE pain down there.
The doctor now has me on a low-dose of anti-biotics ALL the time. I thought it was a kidney stone
but it wasn't.
Go get the Cystoscopy. Tell the doctor how scared you are, maybe he'll prescribe something to calm
you.
Pam yeah
Posted 11/7/2008 2:58 PM (GMT 0)
Lois - just FYI, cymbalta generally doesn't affect the nerve (parasthesia) symptoms at the lower dose you were taking - 30 mg. Generally you need to be taking 60 mg. for that. But we all know medications are different for each of us, so maybe cymbalta isn't the right one for you. I just thought I'd mention the dosage since you said you're thinking about trying it again. It sounds like you may need something to help you with depression, and even if you decide not to try cymbalta, you could talk with your doctor about other anti-depressants. There are many types, although not all help with nerve pain. I'm taking effexot ER, which is somewhat similar to cymbalta, but it helps with my mood though not with the parasthesia in my feet the same way the cymbalta did. It is important you take the same dose every day, though. Hope you find something that helps.

PaLady
Posted 11/8/2008 12:22 AM (GMT 0)

I am taking 3000mg of Gabapentin a day.

Any less and the neuropathy comes back too strong.

We are all so different and react differently to meds.

Bonnie

Posted 11/8/2008 10:33 PM (GMT 0)
3000 mg of Gabapentin? And you are awake and functioning? I upped my dose several days ago to 900 mg and am soooo tired. I started at 300 then went to 600 and now at 900. Not sure it is completely helping. I don't know if I want to go higher though cause I feel exhausted. Are you having side effects?

Also-Pamela...I read online that for the cystoscopy they can put you under or at least make you real groggy while doing the procedure. Did they do that for you? I have bladder pressure that is unresolved. Doc gave me pills but don't want to be on tons of meds. Would like to know what is wrong with me. My chiro said could be fibroids but I don't have painful periods.
Posted 11/8/2008 10:51 PM (GMT 0)

LOL Yes I am awake.

 I started lower and went up to 3300mg, then tried to switch to something else and that was a "horror" so much pain! ! !

Then went back up to 3000mg. Have tried to go down 100 at a time, but can't get very far down so I will stay where I am.

Not only awake but putting needles into people at work (I work in a medical lab) LOL, honestly.

Could not be working without Gabapentin and stretches for mfp.

Bonnie

Posted 11/8/2008 11:12 PM (GMT 0)
Lois,
I take 1600mg of gabapentin (400mg - 4X/day) but it took me a long time to ease my way up. My doctor had wanted me to ease up to 900mg within a week's time, but it was way too much for me. So I talked him into giving me some 100mg capsue so I could ease up more slowly. I know it makes me groggy, but the worst of the side effects I think have passed (I've been on it for about 3 years). For awhile even my vision was a bit blurry, but that went away. I'd love to get on something else that didn't dull me, though. But you may just need to ease up more slowly.

Whenever I think maybe I can do without it, I just look at what happens when I'm late for a dose - all the symptoms in my feet get worse. So I know I need it. But the cymbalta got rid of the symptoms in my feet almost completely. The neurontin just dulls the symptoms.

PaLady
Posted 11/9/2008 1:54 PM (GMT 0)
Lois, I am sorry you feel the way you do. I am not a dr by any means, but a can tell you are depressed. Whenever I come off my meds for depression I can see hindight that I have a problem. I briefly went to a shrink by recommendation from my pain dr. He explained that chronic pain & depression are hand in hand. I tell you, it felt good to get things off my chest- if anything just about my condition cause we all know how isolated you can feel. At least consider it. It did a world of a difference for me. I was pushing everyone away who was in my life. I am stunned at the amount of gabapentin you are on! Why aren't you on Lyrica? I think it works a ton better..... I never had any relief on gabapentin. I am also on Cymbalta 60mg 2xs a day, and yes there are a few side effects- but they outweigh not taking it. I also take amitryptiline, its cheap (like $4 @ walmart w/no insurance) & it helps with pain, depression & sleep. So maybe thats one to look into. Its low grade, I take a 25mg @ bedtime. I have been on effexor & zoloft as well. I had minimal side effects on both of those as well. I hope this helps you some. We are all here if you need to vent. We all have our pity party days. ((hugs)) hope this helps you feel better!!
Posted 11/9/2008 6:24 PM (GMT 0)
Hey Kttn-

I am on 900 mg of gabapentin every day but a couple other posters are on almost 2 and 3 x as much! And I have thought about going back on cymbalta but I am not sure if I should or not. Side effects for me even at a low dose were memory problems, tiredness, anxiety and feeling impulsive. I was on 30mg and still feeling all that! I had been on cymbalta for years and before that effexor xr. I have tried tons of meds in my life for depression and anxiety. Paxil, zoloft, buspar, serzone, prozac and wellbutrin. As for why I am not on lyrica is because lyrica doesn't have generic yet and would be more costly. The co pay with my insurance for gabapentin is $10 and for lyrica would probably be $50. The doc also said lyrica is not necessarily better. If I knew what would work to make all this go away I would do it. I would take that magic pill. I have been so upset over my condition you can't even imagine. I went from a very active person working out on average of 5 days a week to not working out at all. Then I decided the workouts would probably help and I started back up again but nowhere near what I used to do. I am not saying I was this hugely happy person before but I was living....right now I feel like I am suffering. I think about my condition all the time. Some days are better than others. I want my doc to figure out what is wrong with me. I sometimes think that if this is how I will feel forever then I cannot do this. I don't know how I can make it thru. I get so scared. I started to see a new therapist last week. He does hypnosis. Will discuss with him on next appt. when we can start doing the hypnosis and hopefully that will help. I also want to see an accupuncturist because I heard that can be very beneficial. I would do anything to feel well again. Anything. I cry all the time. I don't want to just medicate myself just to do it. My urologist gave me 2 types of pills for my bladder because of the pressure but I haven't started taking them yet. I hate being all medicated. My Dad has MS and type 2 diabetes so he takes all different types of meds and will have to forever but I never thought I would be like that. I am married and my husband and I are going to get an annulment or divorce...not sure what yet. It isn't cause of all this but it is hard cause I cry all the time and I know this is so hard for him. I hate the pain I am causing him. I hate it worse for him than for myself. I also feel like who will ever be there for me. Will I ever find someone if I have this condition? I hope so but I don't know....sometimes I feel so hopeless....This has been hard on my husband...my family....and sometimes I don't know where to turn.

Post Edited (lois22lane) : 11/9/2008 2:16:59 PM (GMT-7)

Posted 11/9/2008 9:10 PM (GMT 0)
Lois,
You are going through so much all at once, i'm glad to hear you have a therapist. Please be sure to tell him/her all the thoughts you're expressing here. I know hypnosis and acupuncture can be helpful, but there is a very physiiological aspect to depression as it relates to chronic pain that very, very often needs to be treated with medication. I see you've been on a number of anti-deprssants. Sometimes it's challenging to find the right mix of medications for depressions and/or chronic pain. I know this sounds scary to some people, but I would ask to have a consult with a good psychiatrist if you haven't already. Complicated cases may need your pain management doctor and psychiatrist to work together. Unfortunately a lot of the medications we take for chronic pain can be depressants and make our mood worse. Add to that your pending divorce, and you've got a lot on your plate.

Please try not to be so resistant to finding medications -whether it's for the short or the long term, but especially for right now while you're going through all this. None of us wants to be on all the meds. we're on. I certainly don't. But we reach a point where there's little choice.

Just as there is something called intractable pain, there is something called intractable depression which can be difficult to treat. So finding a psychiatrist who works with challenging depression could be a very helpful thing for you. Please keep posting, but also ask your therapist to help you find some additional help.

PaLady
Posted 11/12/2008 12:23 AM (GMT 0)

JJ how is it going?? You have not replied to us.

Please let us know.

Bonnie confused

Posted 11/12/2008 3:03 AM (GMT 0)
Sorry for not getting back sooner, was feeling a bit down both physical as well as my demeaner was not the greatest. Kind of fed up with bust and boom life style, one day i feel pretty good the next I cant move. I will pull my self out of it i always do
Posted 11/12/2008 3:07 AM (GMT 0)
I am sorry you are feeling so bad.
I know it is really hard, especially when
your lifestyle has to change because of your pain.
We all have the same difficulties.
No-one without having had chronic pain ever
seems to understand do they.
Where are you in Canada??
I am on the west coast.
Bonnie
Posted 11/18/2008 2:37 AM (GMT 0)
I live inMontreal, I was in vancouver this past summer to visit family, ive been there many times in my past life, my family never been so it was fun. Still love the estern part of canada better. Bc is a little too healthy for me, too green
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