Chronic Pain

[robertofdc]

I have also heard good things about Lyrica. Please let me know if it works for you. At this point in my life I am willing to try just about anything.

robertofdc

[Sue Val]

OOOHHH!! believe me I have not given up hope!! and hope other people have not either. It is very hard to keep on but I must for my family. I only wish one day people or educated people can come up with a solution for this pain. I only hope also other people will come forward and talk to us and let us know what they have come up with their plans or way of life. I so wish I could come up with something to help you's all. It is a very debilitaring and argumentative disease for all of us. Doctors are so undeducated about this. It's really sad that they are. If this was cancer they would be so willing to help but for something so unknown they would rather not investigate. I only wish I could find some Doctor who would investigate on all this. I so wish I could do this but I will need much help on this issue but it is very difficult to get anybody to listen but please all of you be patient and bear with me ok. I will post what ever I find.
Thanks for all your posts and you are all in my hearts.
A friend in pain.

[ses209]

Hi there. From the number of people who've replied to this topic, it seems to be a fairly common problem...which is incredibly unfortunate but at the same time kind of validating for those of us suffering from a seemingly incredible condition. I've been suffering from chronic pain for almost a year now. It all started when I went to donate blood (I know, you're supposed to get good karma from that, right?) and the phlebotomist missed my vein and struck my radial nerve instead. I was 20 years old, in great shape (I had one year earlier just completed my first marathon!), and beginning my junior year of college.
The pain I felt was immediate and was like nothing I've ever experienced before; it was as if the pain manifested itself more as a reaction than as a sensation- I've heard of "flight or fight" before, but when I sat straight up and demanded that the blood drive nurses remove the needle from my arm, I felt as if this VERY uncharacteristic response occurred before I could even evaluate the pain I was feeling. My response was so immediate that it was as if my mind was trying to catch up to my body's reaction.
Ever since then I've suffered from erratic and debilitatingly painful semsations in my right arm (I am right-handed). I can empathize so much with what I'm reading in this forum- from the burning, the stabbing, the deep deep aches, the lightening bolts, the tightness, the tearing, the pins and needles, the sparks, the stinging, and the fire ants- to the frustration of going from doctor to doctor, the nights upon nights of sleeplessness, the inability to perform simple tasks, the "tough love" of people who underestimate your pain or think you're just malingering, and the prescription narcotics that (for me anyways) distract you from the pain at best while doing little to actually relieve it. You feel like you're losing your life- yourself!
For me it seemed to take forever to even gain access to a doctor with any experience in this field. Initally I spoke to the doctor at the blood bank who told me the pain was just an overreaction ON MY PART and dismissed my concerns and pain by telling me that it would get better in a few days or, at most, a couple of weeks. Meanwhile, I was left in an excruciating state; I could not write; I could not type; I could not wash my hair or brush my teeth; I could not hold a book to read it; I needed help opening the front door of my house; I was virtually immobilized by the pain.
Next, I went to the university doctor who, after googling something like "blood donation" "nerve trauma" (really! and right in front of me too!) said that he had never heard of any such complication but prescribed me vicodin nontheless. Having been unproductive for the past few days, I was eager to take the narcotics and get on with my school work and daily life. Bad idea. Shortly after taking half the prescribed dose, I tried to read a book and found myself suddenly very nauseated. Lying on the bathroom floor next to the toilet, I slept off the medication and ironically enjoyed the first night of peaceful sleep that I'd had in about a week. When I tried again to use the vicodin, merely for some temporary relief without expecting to get any work done, I found that the loopey feeling didn't really do much for the pain either- besides permitting me a few hours of uninterrupted sleep. I became increasingly frustrated and discouraged as the pain persisted without improvement and I began to wonder if I would ever feel normal again.
I've heard of chronic neuropathic pain being referred to as "suicide's syndrome" before, and while I sincerely hope that this is not the case, at my worst I could honestly empathize with this sentiment- and I am normally a very happy, optimistic person! I just feared that I would never feel comfortable again. I worried that I had spent 15 years of my life and at least $120,000 of my parents money working towards an education and a life- a future- that I would never come to actualize. I could do hardly anything for myself and there were no hints of recovery to suggest that this would not always be the case. In my worst moments I felt myself lecherously invalid; just two years from graduating I was terrified that I would never make my own contributions to the world, but would instead become an eternal burden the people who had gotten me thus far.
What's more, I felt that I was losing myself. Between the pain and the lack of sleep I had become an emotional wreck. I became self-centered, especially during more severe bouts of pain, and was not the friend or sister or daughter I ought to have been. I could never work out and stopped going to the club soccer team which I helped create. I cared less about my grades and was not respectful of deadlines; my studies simply were not a priority anymore. My identity, my entire self-conception seemed to be slipping through my fingertips! Like I've heard so many of you reiterate, the pain seemed to be taking over every aspect of my life.
The pain killers only made matters worse as I was not myself on these either. A life consumed by constant, unremitting pain is, in my opinion, not a life at all. And likewise I feel that a life passed in the never-ending haze of narcotics is not living, but an escape from it. I began to feel that the injury had not merely taken the use of my arm from me, but my life and my very identity! The one preserving thought that always echoed through my head was that I would much rather feel horrible pain than nothing at all. Besides the pain, the injury caused me (initially) to lose a great deal of movement and sensation (I worked with a physical therapist and now most of my movement and enough of my sensation has returned), and I remain convinced that sensation- ANY sensation- is preferable to paralysis; with pain there is more hope, I think.
Of course I realize that I cannot and should not be too preach-y. I have only been dealing with this condition for less than a year, and cannot begin to imagine the suffering and the courage of those who have put up with the condition for so SO much longer, especially those who have been managing their pain for years without sympathy from doctors or professionals who understand or at least recognize their condition. I personally have found that one of the most frustrating aspects of neuropathic pain is that it is difficult if not impossible to explain to people who have not experienced it; well-meaning friends and family members would often suggest that I just try to ignore it, not realizing that the very-real sensations I felt were unlike the experience of regular nociceptive pain.
Eventually I was able to see a neurologist who, though he admittedly specialized in sleep disorders and not pain, was an excellent doctor and the first to recognized that the condition was the result of damage to my peripheral nerves. It was so incredibly gratifying to have someone listen believingly to my complaints and to help me take proactive steps towards recovery. He prescribed Lidoderm patches, which offered some relief- especially from the stinging, the sparks, and the more "surface" sensations- and unlike the vicodin, the Lidoderm did not affect the rest of my mind and body. I also had to run the gauntlet of tests: X-ray's, EMG and nerve conduction, blood tests, and an MRI of my brain and spinal cord.
In the end I ended up moving back to Colorado with my parents, where I began seeing another doctor who specializes in (specifically surgical) treatment of pain conditions. He too recognized the problem instantly. He was not even dismissive when I told him, hesitantly, that I recently had started to feel small, isolated sparks of pain in the other forearm (at this, even I began to doubt myself!). Rather, the doctor seemed concerned and explained that sometimes neuropathic pain mirrors itself in the other limb. While the news was not exactly happy, I was at least glad to have someone else reaffirm my sanity!
What's more, this doctor finally prescribed me the medication that has since changed my life, or you might say has even given life back to me! It took a few weeks before the benefits of Lyrica began to kick-in, but right now I am on 300 mg daily and finally feel as though I have a future again. Admittedly I am not perfectly free from pain but I am infinitely better than before, and the only side effect I've noticed so far has been an incredibly refreshing and (totally uncharacteristic of someone my age) regular sleep patterns. I feel functional and capable of participating in almost all of my old activities, although not always for the same duration as I used to (I'm not sure how much of this is directly related to the nerve damage and how much is the result of muscle atrophy). Being able, finally, to express myself in writing is one of the most rewarding and therapeutic of my recently recovered capacities. I can comfortably type this very VERY long post when just a few months ago even a few lines would have been daunting to say the least!
I still worry about the continued mirroring and spreading of the pain, especially when about a month ago I ran out of my medication and before I could pick up a new prescription my pain came back with a vengence and was equally strong in both arms, and I even felt a few sparks in my legs and along my sides. My doctor initially mentioned the potential need for a sympathetic nerve block, and I hope that if this is necessary, it is not too late. He also mentioned the possibility of a spinal cord stimulator, but given my success with Lyrica, neither he nor I think that surgery is necessary right now.
In short, I know that I have not had to deal with this condition as long as so many people have, but I still encourage anyone who can make it to the end of this post not to give up hope! It sounds cliche I know, but there really are a wealth of treatments out there and who knows what combination may work for you, or what new treatment has yet to be discovered. And even if it isn't perfect, life isn't supposed to be perfect anyways. But it might be better; it might be managable. It might even be conquerable!
Dealing with pain is certainly a process, but it has given me fascinating insight into myself and into the frontiers of our knowledge of our own biology (from what I hear, scientists still don't understand exactly how neuropathic pain works). I often thought of it as a condition that would fascinate me if I weren't so constantly subject to it. Now that I am beginning to take control of my pain and to reclaim my future I, for the first time in my life, feel like I know exactly what direction I want that future to take; I'd like to become a neurologist myself. What initially seemed like the worst timing ever has now provided me with just enough semesters to switch to a pre-med degree before I graduate. What initially seemed like the worst situation ever has piqued my interest in a field I otherwise would have never considered. Again, I know it sounds cliche to insist that there is a bright side- possibly even a purpose- to all the negative things that happen in one's life, but I also truly believe that preserving a sense of hope and SEEING the potential good in even the most wretched situation can maybe just maybe turn into a self-fulfilling prophesy.
I sincerely wish for the best for all of you, and can only hope to encourage you to not give up and to continue to pursue competent doctors and helpful treatments. I am just so glad too to know that there is a place people can go to know that they're not alone in their suffering.

[cakelover]

Hi, I am new to this page and this is the first post I read. I started to cry. I have been feeling so low and discouraged with my life and the pain I have each day. I got onto this site and all of the sudden I feel like have some friends who understand what it is like to suffer pain each day while trying to live a "normal" life.

I don't know if you have talked to your doctor or not about Cymbalta. I have tried every nerve med there is. I was watching a Cymbalta commercial and it just made sense to me. I have been on Cymbalta for almost a year now. It has not taken the pain 100% away, but I feel so much better than before. Along with long and short acting pain medication, I have had some really good days.

My pain is in my back I have been diagnosed with syringomyelia (Syrinx). It's a swelling of the spinal cord which causes my nerves to shoot pain continuously. There is no cure. It just sucks! I try to keep a smile on my face but right now I am tired and no one is looking. I am 38 with two small children. I understand the daily struggle of wanting to do it all but can't because of the pain. I also love to do water aerobics. it feels so good to be in the water and have the pressure taken off my body. Have you tried the water for your legs?

[Sue Val]

Hi there ... I really feel for you my dear. Just to let you know you are not alone and I am here if you need to talk some stuff out. I know sometimes just talking about it helps for me. I live in Canada and Cymbalta has not come here yet..I would be willing to try of course but don't have much hope. I feel like I will never see the light at the end of this tunnel. I can only pray for some kind of medication that will help or some doctor who will want to help. Every doctor I have seen don't want to deal with me so they just tell me there is nothing more they can do for me and to on my way. I feel so empty at that point. But I'm not giving up I keep searching the net for any kind of help. I have tried the hot tub for my legs it has helped somewhat but not long enough to help me sleep. But thanks for you suggestion. Let me know if you can think of something else. I am willing to try anything. I have to go now as my feet are becoming numb and must walk around a little before trying to get some sleep but please do keep in touch and any advice you may have would be appreciated. I will keep looking for you and will do some research on your disease. Please bear with me though if I don't get back to you right away. I have been having problems getting on this forum. I lost my password so now everytime I sign in I must retrieve a new password and this takes a few hrs sometimes. Anyway nice talking to you and I will pray for you tonight.
A friend
Sue in Canada

[reruho]

I have RSD/CRPS with both burning and freezing pain.

I am very happy to hear someone is having success with Lyrica. I just came off three weeks of it and it was a horrible experience. It did take care of the burning but the cost on my body was not worth it. As I told the nurse, "What side effect did I not have? Oh yes, vision problems." I think the back pain was the worse. Ramp up slowly and if you have to come off it ramp down slowly. Even after taking it for just 3 weeks I went through withdrawal symptoms (cramps, diarrhea and nausea). I even took a week to ramp down from 150 mg a day. Not much at all.

For my friend,Pat, this is a miracle drug.

[nearlynew]

Hi guys,

I am in Ontario and I live with chronic pain spinal cord injury 2001. Did a neck surgeyw c56 with plate 2003 and 04 did low back microdisectomy. I am 49 this year and am now living with the bulging c6 7 disc due to the dominio effect. I hated taking any drugs, I treadmilled and air climbed most of my years to stay active and lean and the pain now is as bad as in 03. So I did the conventional things and finally after no avail went to pain clinic for needles, lyrica, librax etc. What a nightmare. Lyrica causes peripheral compression in a small percentage which was me and my hands and feet turned blue till we entered into smaller dosage of 25 mg building up to 75. Then my neighbour a Osteopath said stay away from that stuff if you can. So I ended up back at Chiro who noted my neck looks like some kind of calcification is compressing my esophagus. Lucky me. Between that the bulge I am beside myself.

I have a great hubby and considerate loving kids. I have always mainted my appearance and told I look 29 but this is the extremely taxing and my body of 49 is having trouble getting through. I fear what ten years holds for me.

So like you all I bite a 1/4 of a percocet, bite a Torodal when the spasm push my shoulders to my ears.

By the way I know all about burning feet. That is like an l5 s1 disc herniation that is being caught. That is definitely a symptom and oftentimes, these discs balloon and deflate and and MRI doesn't always catch it at the right time.. So hang in there.

The only answer I have is ice. Ice on the neck or low back in a plastic bag, not a gel pac for TOPS 15 minutes will help to dissipate the disc and help eradicate neurological pain associated with that disc and its adjacent nerves. Also when there is inflammation the body sends blood there to give it oxygen which will cause the disc to inflate, thereby pressing on the nerves causing jaw pain, ear ringing, feet burnign etc. So in the height of the pain ice every hour for 15 minutes, for three days and there after try 3x day . You have to get the blood away from the disc so it will unswell and stop compressing the nerve eliciting the pain.

I am not a doctor but am schooled in the sciences and there are interventions like above that can hlep you get through when you are struggling alone. No one knows the pain. It is your journey so advocate for yourself and be responsible for managing your pain. It hurts to be told this - I know as many times I feel victimized by an accident that altered my life forever, - just a chair collapsing - but this is my body now and somehow I have to make it work. Look around you - there are others like us, so find the right meds, take your holistic vitamins and foods, meditate, stop and listen to the breeze and start learning to reinvent yourself because right now EVERYTHING has changed.

Good luck... sincerely NEARLY NEW>

[Sue Val]

Hi
Just wondering where in Ontario are you? I too am from Northern Ontario and doctors around here are very scarce and undeducated about this disease so people like me are left to suffer for years before finding a reasonable treatment. I have been to the pain clinic at Mt Sinai and in Oakville. I have to travel for 6 hrs. and these trips always end up being a loss of time and money. I would do anything to get help but when you travel that far and get your hopes up for nothing it really becomes torture. It is really sad that people have to suffer from this pain with no hope for a cure or a treatment. I have tried a lot of your ideas and nothing works for me although your advice is all good it just didn't work for me. I wish it would though. Beleive me I have tried everything.
Anyway just wanted to welcome you and wish you well.
Sue in Northern Ontario

[nearlynew]

Hi Sue,

I am actually in Burlington right next to Oakville. I can completely empathize with you as I had to travel to Brantford for my surgery and home again which is nothing compared to living where you live; I was sore and exhausted that time. Now I go to Richmond Hill to a Pain Clinic Toronto Poly Pain Clinic on Bayview and those needles and meds helped; the needles were a way to rid the pain but being a holistic type person I tried not to need them. So I begged off and now I am hoping that I can do them but less as the agitated nerves in my body have quelled a little. My latest problem is the swallowing and it seems my neck surgery's possible calcification is obstructing my throat. All kinds of studies show this is common in women after 5 years post op but surgeon would not comment. So you do what you have to do.

Years ago while waiting for my surgeries I watched CNN and Dr. S. Gupta was on his Sun a.m. program with a Stanford University Prof Head Neurologist and they both talked about the lack of understanding pain UNTIL each of them suffered a herniated disc - one lumbar and the other Dr. cervical. I remember they said their whole understanding completely changed as having a patient tell them all those years was completely incomprehensible until it happened to them. I remember I broke down and cried to myself as I was dealing with both lumbar and a cervical that was on my spinal cord. The pain is not just back pain or muscle pain it is like sticking your hand on the breaker panel vs. the outlet. So I then realized people have to walk your walk LIKE ANYTHING to get it.

I now use ice, give in to biting a Percocet when I need to, take .5mg of Ativan which I had for my trips to Antigua when I feel the spasm is overwhelming and I have found the new ULTRA Tylenol seems to be a posssibility. I don't think any protocol of pills or workout or icing suits all of us but certainly all of those things can help for limited periods of time. When I had my spinal cord compressed by the sequestered disc the pain was out of this world...and i was living on meds. However when I went for my pre surgery check up the anaesthesiologist said you are on so few drugs and still treadmilling and that is unbelieveable next to those who are on 15 -16 drugs to get through this. I wasn't a hero to anyone really but myself as I figure I saved my liver from the dreaded percocet fall out which I would have had, if I had taken all that they said to.

You have to live each day telling yourself that you can do this - some days it's hard to hear that but then you have to have a quiet day, and remember there is a light coming or a day that will not be as hard.

I miss me terribly - however a friend of mine had MS and obviously would have rather been in my shoes and told me have the operation because if you are 50% better it is worth it. It was true...I was for about 4 -5 years and now I am on the next leg of my journey.

So don't despair...as I type my arms tingle and my neck pains but I can go and bite a pill or ice it to try and get on with my day. Not everyone has the option.

I hope you keep seeking out what works for you. The Lyrica seemed to be great but for me was a nightmare after a week so I cannot take it.

Remember you didn't deserve this fate but for some reason you have to find a way to live with this and make the most of the gift of life you have been given. Not always easy but definitely a choice. So hang in there...I am rooting for you.

Elaine

[Sue Val]

Hi Elaine
Nice to make your acqaintance. How Ironic that I was just in Oakville this past August. Shows you what a small world. I felt I needed to go there but it ended being a waste. The doctor there was very sympathetic and was very disturbed that I had travelled so far. Of course this was nothig new to me as I have been to Toronto many times. He told me to try the nerve block seeing I had travelled this far. He gave me 4 of them, 2 in my neck and 2 in my groin (for my feet and legs). As I drove home I kept waiting for this to kick in. NOTHING happened! He did tell me he was going to write a report to the doctor who referred me the clinic ( I do not have a family doctor so I have to rely on walk in clinics and as you know these doctors don't always understand your pain and desperation.) Anyway he wrote a very thorough report and told this doctor I should be on opiods.(hydro morphone in the morphine family) He was very compasionate with his report. I waited though 6 weeks for him to send the report. The doctor at this clinic seemed very clueless on what to do. I had to show him what the doctor in Oakville specified. ( Man! some doctors are ignorant) He did finally put me on this medication 1 mg of hydro morphone. Well guess what?? It doesn't work. I thought finally I can get my life back. So here I am back to where I started. The doctor in Oakville gave me tylenol 3 in the meantime. I felt this was helping more than anything but had to take up to 12 a day. That is scary but I was getting relief atlist. I am not giving up. I keep searching on the net for some kind of help. I am 51 years old ( feel like 80) and have a wonderful family. I have 3 girls 26, 23 and 13 years old. They still all need me so this is what keeps me sane. I certainly sympathize with you though MY GOD! what you must be going through. You seem reluctant to take the medication I hear you on that but do you not think it would keep you sane. The only problem now I have with the tylenol is it's hard to get a doctor who will prescribe this for me and that amount. I told the doctor in Oakville I would rather live with these pain medications than live like how I'm living. He said I would be MARRIED to these medications for the rest of my life. Well so be it. I really hope to find a doctor who will help me out on this. I too have a hard time sitting at my computer and have to go get some ice packs and some pain meds. Hopefully you can keep in touch and give me updates. I am also praying for you.
Sincerely Sue
Sudbury Ontario