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  • Have you been told you have "chronic Pain Syndrome" and what works for ya?

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    Old 11-15-2007, 03:28 AM   #1
    Backinthesaddle
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    Have you been told you have "chronic Pain Syndrome" and what works for ya?

    Just curious, my PM would only say after over a year of our visits that the closest thing I have is this CPS. I have tried to do my own research and gathered lots of information and talked to him about anything that may help and it all fell on deaf ears as he updated my current prescriptions. He has completely given up anything then pills. I am a sufferer of the workman's comp system so changing doctors is not so easy (but I am trying). I really want solutions not more pills.

    I noticed that while I was off of work pre and post surgery I felt the best. I returned to work in October of 2006 and it was good the first 5-6 months before I started slowly going downhill. Mind you I am in much better shape then many of you here since I do work most days and can lead even a part of my normal life. However, after all I have been reading about Chronic Pain Syndrome stuff online I have run out of ideas. I do stay in shape with physical activity like you are told to, I do get rest howbeit, not so great most nights, I do eat right, I have gained little weight, I try and keep hopeful, I take my meds and still I see no end in sight.

    I guess a short version of my story is I had a decompression of C6/7 2003, a ACDF C4/5 2005 post 18 mo moderate-severe spinal cord compression and now am waiting for date of my 3rd surgery ACDF C6/7 post laminectomy failure. My pains are both arms, hands, shoulders and neck. I have causalgia in the left arm parasthesis in the right. I have some weired nerve misfirings that shoot down the hands, elbows and fingers. I also have this feeling in my lungs that feels like I am being either choked or am in a dirty dusty warehouse breathing in awful air. I take Lyrica 75mg 2-3x up to 400 Ultrams topped off with hydrocodone. I also take 4-6 Baclofen. I added IBprofen to see if that helps with inflammation and seems to.

    I am in the process of a major life decision and that is to retire or not. Some days I get through fine others I just medicate and keep going, well I medicate everyday. My doc wants me to retire he doesn't like the amount of meds I take. I am on a private pension and if approved can retire with close to what I would make if I worked years longer. I just have no idea what is right. I do not know if one day this will be all gone. With what I research about Chronic Pain Syndrome it can go away. If I was to retire I have to be in this state of pain for at least 5 years until I am free of doctors approval. What if it goes away in 3 years and I am good, then I have retired and loose part of that retirement. Noone can tell me if it will go away or stay. Obviously I would rather it be gone be if it is going to go away soon then I just have to suck it up for a bit longer.

    As you see I am just looking for anyone who may be in a situation like this, or knows about CPS I figure real people know more then our PM doctors seem to.

    Thanks

     
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    Old 11-15-2007, 05:21 AM   #2
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    Re: Have you been told you have "chronic Pain Syndrome" and what works for ya?

    Hi Back in the saddle, First off, There are things that can be done, Workmans comp just doesn't want to pay for it. Epidural steroids, Nerve blocks, trigger point injections, chiro manipulation, massage, E-stim, Marcain or Robaxin infusions, acupuncture, etc etc etc. My wife has great luck with her neck problems with Botox, TP injections and an occipital block every 3 months and has done great at reducing her med intake by 60%.

    Trust me, all Trigger point injections arenít the same. I have had at least 10 different PM docs do them over the last 14 years and at best only half of those docs were any good with a needle. Some were so bad it was a total waste of money. Others can provide great relief. Itís a technique that requires more than knowing the name of the muscle they inject. Itís a modality where docs have to have a touch for it. Just like acupuncture, anyone can learn needle placement, but actually providing relief is another story. This is so true with so many different interventional techniques, it takes more than knowledge to be be a healer or bring relief.

    The thing about leaving work is you don't know how valuable that interaction is at distracting your from the pain. Once you have been home a couple months or years, seen every rerun, new movie and read every book every written all you have to distract you from the pain are the things many people avoid that may cause pain.. It leaves you looking for something that makes you feel productive which is a huge part of fighting off the depression from the enormous life changes.

    If you are close enough to retirement and you had this planned a few years from now, I would assume you had something planned as far as passing the time. Sitting at home with nothing to distract you from the pain makes it easy for pain to control your actions rather than acepting your going to have pain anyway and you controlling the pain. Although going for a walk or finding a way to excercise may cause pain, It puts you in control of your life and has you doing something that can only help.

    There is nothing healthy about living a sedentary life. Just ask my cardiologist, I had a MI on my 36th Bday with a cholesterol level of 120, my BP had been high for years from being in pain all the time and my docs didn't recognizing the dameg that high BP from pain was causing. I guess they thouught it was only high when I was hurting and couldn't understand that I hurt all the time, therfore my BP was high, ALL the time.

    Having nothing intelligent to speak to your spouse about other than what was on TV that day, certainly leaves most folks a little depressed and feeling useless. I can't emphasize enough the huge value of distraction and the sense of self worth that works brings.

    I've been disabled since 99 and was only 33 at the time. I had my 3rd surgery to revise a failed fusion and broken hardware. this surgery went an extra 6 hours and lengthened my fusion by 3 more vertebrae leaving me fused from L1-S1, "entire lumbar spine." I was bed ridden for almost a year post op and then with the help of meds I slowly started doing more just to feel I was contributing something to my family. The last surgery failed to fuse and I'm slowly breaking one piece of hardware after another, but there really isn't a vuable surgical solution at this point. # have failed, what would make anyone think a 4th on the smaeme area would turn out any better especially since they would have to lengthen this fuison another 3 vertabrea, remove ribs, run a bar from hip to hiop and do an global 9 level fsuion to revise the previous failures.

    A monthly check isn't what instills value or meaning in someonesí life, so if you take money out of the equation, are you ready to retire? Do you have something you can do to keep from losing your mind and second guessing every decision you made.

    It's a rough road, but you can come back to some degree. I'm working part time now, SSD allows no more than 20 hours a week, 80 hours a month or $900 a month gross. SSD allows a 9 month trial work perriod and I worked as much as I could during those 9 months. Despite the huge progress I made, working 8 hours and getting up and doing it the next day just wasnít posible. I was crippled the next day and hadnít slept more than 3 hours from the prior days work. Being on me feet with another failed fsuion, more broken hardware and bone grinding on bone can't be changed by excercise, but you can strengthen your core, corect your postire, loose weight and learn other ways to cope with pain.

    However, while at work, I could control the pain and enjoyed the interaction with other adults. . I actually had something to talk about at night although I did it laying on the flore having muscle spasms. But sitting on the couch all day pretty much left me in the same position each night anyway.

    Getting out of the house is more important than the money. I actually wish I could work more because I don't take any meds at work because It's hard enough learning new technology at 41 , but to try it while taking pain meds, muscle relaxers and the standard CP combo is virtually impossible.

    I had a pump implanted 3 years ago and that greatly cleared my head and gave me enough relief that I was able to loose 30lbs and rebuild with my own excercise program what years of living sedentary had cost me physically. Not to mention the psychological crud from being homebound and feeling like a shut in. Now I feel guilty if I don't exercise every day. I know my docs have done everything they can do, now itís my turn to do everything I possibly can to improve my situation.. Spending the day on a heating pad really isnít proactive as far as attempting to change your life or recover from an injury. I'm going to hurt wether I exercise or not so I excercise. I hurt whether I work 5 hours or I spend 10 hours on the couch or wandering the house looking for a comfortable position. Basically, being stuck at home sucks. The less you do, the worse you feel.

    Being disabled and unable to work has nothing to do with finances, I kinda chuckle when I read someone can't afford to be disabled. That's not even something that goes through your mind when you canít stand in the shower without help. You either can work or you can't. There really is no middle ground when initially applying for SSD, having pain at work wonít win anyone social security and is hardly the same as being disabled. Your fortunate you have a retirement plan, but money only means so much as far as how you feel about your own self worth.

    My buddy worked for the city and was forced into early retirement after a heart attack and stroke during the angio. Itís required he apply for SSD and he recently found out that if he hadnít, he wouldnít have recieved early retirement. So be sure you know all thr rules. Perhaps once you retire, get out of the comp system, perhaps have medicare if you deemed disabled by SSD, more options will open up as far as seeing other docs. I understand you have lifetime medical benis from comp, but if they arenít going to approve anything, it might be worth trading them for a cash settlement and using your regular insurance or medicare once you have been approved to find better care.

    If you feel you can continue to work, the amount of meds you take is only your docs opinion. It really isn't squat as far as taking huge doses of opiates like long acting morphine, oxycodone or using a fentanyl patch. Do you feel too impaired to work, are you in a position youríe putting yourself and others at risk because at work because of meds ? Whether or not your on a huge dose is completely subjective and everyone has an opinion. A different doc would have a different opinion.. It may take seeing 8 PM docs and trying a dozen procedures and 15 new meds to find what works best for you.

    I went through 3 surgeries, 3 PM /PT boot camps that were 8 hours a day, 5 days a week and lasted 4 weeks. Iíve seen at least a dozen different PM docs and still use more than pills after 14 years of CP. Iíve have tried every interventional procedure, surgery, and medication you can imagine and you have barely scratched the surface of what is available. I continue to use what methods work and the ones that didnít just allow you to check one more thing off that you did try in order to improve your situation.

    Knowing you have tried everything also makes excepting your present circumstances much easier. I donít wonder if I should have tried nerve ablation, Botox, or tried harder in PT. I work out harder than any PT or doc would ever ask because Iím the only one that can make a difference at this point. You certainly arenít at that point when you know comp has turned down every thing your docs think may help. There are things that can be done and tried, you are just going to have to fight for them harder than others. Itís not fair, but who said life was fair.

    Good luck, Dave

     
    Old 11-15-2007, 12:02 PM   #3
    Backinthesaddle
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    Re: Have you been told you have "chronic Pain Syndrome" and what works for ya?

    Wow Dave thank you so much for so much valuable information. I think I chatted with you years ago. You are surely a wealth of information.

    I do one way or another plan to retire in the next few years. I do work for a major city entitiy and our plan is a private pension and I have already spoke to them and know how much money I will have if I receive a medical retirement (sadly the same I would recieve if I worked another 6 years).
    My brother in law had a dead heart from a virus and also had to get SSD before his own company that he was co-owner of would grant him his pension at full pay, well, I guess it was a union pension. Im glad ours is not like that.

    I have a two year old little boy so boredom is not part of my picture. I also have three horses that would love a regular brushing and a quiet ride in the back. I love working in the yard and working out anyway I can. I also plan to find something part-time via the internet or something. I do not think I would get bored. Remember women do not have that same drive as men to work work work. At least I don't. I want to feel good. I would love to clean my house one room at a time even if it takes a week to do it.

    I can usually only work, come home, get my son and play with him. I do what I can and then on my weekend I play catch up with cleaning, grocery shoping and so forth. I do not have very much energy at the end of my day off either and have almost NO time for me. I fall into bed with my two year old most nights by 8pm. I do get up at 4-430am for work.

    My job isn't hard but it is stressful. I do use my arms and hands all day long. Sometimes not as much as others but it is part of the job and there is no resting if I need to. I think that is my problem with work. I enjoy what I do and make very good money (which would be cut 60% if I retired). But I am tired of being tired. I wake up with very sore arms and hands and after a few hours and my first round of meds I feel better and then again around noon I am taking my second round of meds. Then when I go to bed my third round of meds. Somedays less and somedays more. I work out on my breaks and some days if I feel up to it I go walking during lunch. I have been able to keep up my strength and somewhat of my shape for a 44 yr old not to bad. But would I elliminate much of the pain and need for meds if I just didn't have to wake up at 4am? Drive an hour each way to work? And could live much more stress free? Good question.

    In my heart I want to retire, but I am all about what is right and I am not convinced yet that it is. My mind overrides. I do not know enough about this Chronic pain stuff and am trying to see if there is a pattern of good and bad days. I noticed I can have a horrible week and then have a good week or two and then again a horrible one. Or days like that. Why? I start to think that during my good days that the CP is gone. It comes back. But will it stay forever or go away some day?

    Lastly I do not have the option of a cash settlement with WC. We only have medical for life. Or so they call it. It took me going all the way to the state hearing officer with my attorney to get this next surgery for the collapsed decompression. Amazing that they have made me go through all this. And the fact they denied all programs other then meds is crazy. I want a new PM one who will fight them when they say no. But so far no go.

    Ugh I am so confused about all of this...Thanks

     
    Old 11-19-2007, 06:43 PM   #4
    jennifer3063
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    Re: Have you been told you have "chronic Pain Syndrome" and what works for ya?

    Backinthesaddle, Have you looked at other causes for your pain? There are quite a few posts on RSD-Reflex Sympathetic Dystrophy...the New name for this nerve injury is CRPS-Complex Regional Pain Symdrome. There are many different sollutions for this never ending horrible pain, one of which is the correct medication for each individual...everybody is different. There is also an electonic stimulator which is implanted into the body...this stimulator (scs) tricks the brain by intercepting pain signals before they reach the brain. There are large numbers of people with failed back surgeries that without this device, would never be able to get around and possible go back to work if that is what they wish. Look at these Boards and they will help you with symptoms to see if this is something that you may have. Let me know if I can help and I wish you "pain free".

     
    Old 11-20-2007, 07:17 AM   #5
    Backinthesaddle
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    Re: Have you been told you have "chronic Pain Syndrome" and what works for ya?

    Hi Jennifer I have been told by my pain doctor and spine doctor that I have the CPS not CRPS. I am in the midst of having a great week. I posted about it but noone responded. I think it odd how it comes and goes but I am happy for it right now. I am a workers comp patient and they will not approve anything other then pills....thanks

     
    Old 11-20-2007, 11:30 PM   #6
    jennifer3063
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    Re: Have you been told you have "chronic Pain Syndrome" and what works for ya?

    Hi Backinthesaddle, CRPS does come and go...there are times that just when you think it has passed and you are feeling fine, then all of the sudden you have a "flare up" and it hurts worse than ever. I was an Exterminator when I fell from twisting my ankle in a hole at a clients home. I had surgery on my foot/ankle and when they took the cast off, I had swelling, numbness, burning pain, discoloration, and throbbing. There are a host of symptoms with CRPS or RSD and some people feel few, while others feel them all. If the pain comes back after this break, then by all means do mention this to your Doctor. Workers comp gave me a morphine pump and a spinal cord stimulator. Hope this pain break lasts forever.

     
    Old 11-21-2007, 05:20 AM   #7
    Backinthesaddle
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    Re: Have you been told you have "chronic Pain Syndrome" and what works for ya?

    I wondered about a sorta remission thing. I feel bad today but still not as bad. I have cut the meds down a bit and that may be part of it. I didn't want to just numb the pain. I was in the beginning phases of a medical retirement due to the amount of medicines I take to work when I got this reprieve so I put all that on hold. I was just getting used to the idea and starting to make plans for parttime work when I got to feeling better. I cannot proceed if things remain. If however they come back then I know it is just an occassional fluke and will continue with my plans.

    I will be out of town for a few days and not working out so I can see if my pains are muscle soreness or just pain. Well, I know it is both as it is such a different pain then plain muscle pain.

    I believe the reason I have not gotten anything from WC is that my pain doctor gave up. He requested a 10's unit and a multidisciplinary program. Well I got the 10's unit for a few months and it was taken away saying it wasn't for chronic pain and they deni
    d the multi program saying it wasn't for chronic pain. I am not sure what planet they were on as both are exactly for Chronic Pain. So pills is all he will offer. I am trying to get another PM who will try for more then pills. I would rather not have the pills.

    How long of a reprieve have you been given inbetween flares?

     
    Old 11-21-2007, 10:10 PM   #8
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    Re: Have you been told you have "chronic Pain Syndrome" and what works for ya?

    the time between RSD flair-ups vary from 1 hour, to 1 day, to 1 week and even 1 month or longer...but RDS rarely goes away permanently for anyone. I have not heard of any cases in which the person had been "cured". But RSD does spread to other parts of the body, sometimes due to an injury, surgery or procedure and sometimes for no apparent reason at all. Have a save trip and let me know how you feel when you return. Jennifer

     
    Old 11-23-2007, 11:40 PM   #9
    hippiekinkster
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    Re: Have you been told you have "chronic Pain Syndrome" and what works for ya?

    Yes, indeedy. back in August. When to a pain quack I was referred to. Spent maybe 5 minutes with the guy, who palpated and percussed and stretched my foot. There were no recent x-rays in my file, so... diagnosis was CPS. That is, for all practical purposes, a diagnostic code meaning "patient says there's pain, but I don't know what is causing it, if it is even there (which I doubt), so I'll call it CPS". They want to get paid, after all.

    In my case, a later radiogram noted lumbar vertebrae displacement. CPS my derriere.

    I'm really ticked at both him, my PCP, and the pain quack who wouldn't take my case (no explanation), so I'm going to give y'all some info (and I am going to post this on every chronic pain board I can find). Do a search on "Waddell Signs". These are sort-of "trick questions" pain quacks use to see if people are maybe faking or exagerating. There's a new test, too; quack tells you "I'm going to tap the bottom of your foot. You may feel a little pain at the top of your head." Of course, there are no nerves connecting the foot and crown of one's head, so an affirmative answer means one is faking it.

    I'm doing this as a public service.

    Last edited by hippiekinkster; 11-23-2007 at 11:41 PM.

     
    Old 11-30-2007, 07:47 AM   #10
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    Re: Have you been told you have "chronic Pain Syndrome" and what works for ya?

    BITS---Hi,

    I am actually seeking your advice/experience with your spinal cord issues..Another poster suggested I search your older posts because she felt we had similar symptoms...specifically, I have a compression, mostly on the right side at C5-6..BUT my symptoms are mostly left-sided, and I have no pain (as of now) I have been getting opinions from NS's about possible procedures, and they are all confused about the left-sided nature of the symptoms. I was wondering what, if anything you have learned about your opposite side reaction.....I will have to schedule surgery soon before I get too bad, and risk permanent injury(if I don't have some already).....
    The old posts of your that I did read, sounded like you were going through a tough time---I hope that's not the case anymore, and that your pain is more manageable......
    Thanks for any thoughts you may have..........................Doug

     
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