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Thread: Ok it's time to seek help

  1. #11
    ECUrach85

    Nice to see your smile, but sad to hear of your pain.

    I feel differently from some here. I do not think you have a bad attitude.

    The fact that you hurt in the morning suggests that there may be a musculoskeletal component to your pain. That is usually treatable. Musculoskeletal pain is nociceptive, which means ordinary pain meds might help. You do not describe burning, which would be neuropathic and harder to treat. It is actually the dysesthtic burning which is very hard to treat. Lancinating pain is also said to be neuropathic, but we do see those here who find meds help that.

    As to AM pain, I would experiment with different types and thicknesses of pillows. I feel most post surgical patients with neck pain need to study the angle at which they are sleeping. For years, I tried various down pillows hoping for a little relief. Finally I made one of my own. Rather than being thick like a pillow, I made one about 1 1/2 inches thick filled with down from a prior ordinary pillow. I cannot tell you what a difference this made. I call the position now a "neutral position". My head is not at an angle to my body but in line with my neck.

    The pervasive burning is still present. Nothing has helped that. but Klonopin helps achieve sleep. Tried a lot of meds for the burning and some surgery. Still no benefit.

    What is your pain like?

  2. #12
    Quote Originally Posted by dejerine View Post
    ECUrach85

    Nice to see your smile, but sad to hear of your pain.

    I feel differently from some here. I do not think you have a bad attitude.

    The fact that you hurt in the morning suggests that there may be a musculoskeletal component to your pain. That is usually treatable. Musculoskeletal pain is nociceptive, which means ordinary pain meds might help. You do not describe burning, which would be neuropathic and harder to treat. It is actually the dysesthtic burning which is very hard to treat. Lancinating pain is also said to be neuropathic, but we do see those here who find meds help that.

    As to AM pain, I would experiment with different types and thicknesses of pillows. I feel most post surgical patients with neck pain need to study the angle at which they are sleeping. For years, I tried various down pillows hoping for a little relief. Finally I made one of my own. Rather than being thick like a pillow, I made one about 1 1/2 inches thick filled with down from a prior ordinary pillow. I cannot tell you what a difference this made. I call the position now a "neutral position". My head is not at an angle to my body but in line with my neck.

    The pervasive burning is still present. Nothing has helped that. but Klonopin helps achieve sleep. Tried a lot of meds for the burning and some surgery. Still no benefit.

    What is your pain like?

    Oh oh I used the word burning for sure. That's the best way to describe it. Acid, broken glass, frostbite, fire. Etc. and it's not just mornings. It's the act of waking up from sleep. This could be me sitting in the car and nodding off for 3 seconds.

  3. #13
    Also to everyone. I have slightly more feeling in my left side that has improved over the years. The new connections contribute to the pain. I notice my core most. Yes the left side might be kinda worse but it's my boobs down to my ABs and wraps around my whole body. My legs are on fire and my hands feel like they have stage 3 frostbite. I am nearly positive that this is old fashioned central pain with no real reason. Admittedly I do think that when I don't sleep or drink enough water is ups it from an 8 to a 10. If I could live at a 7 you would never hear me complain again.

    Im a pretty upbeat person who likes to have fun but I feel like I've been white knuckling it these past 4 years (anniversary a few days ago). Kinda ready to really live.

    I think I've avoided trying new things because the idea of still having options feels better than my predicted path of trying everything and having none of it work.

  4. #14
    i'm a complex pain patient too much and boring to list wth near zero relief for anything and mornings are scary. however a good doc will work on all the types and while likely unable to treat all satisfactorily each bit helps, hopefully they can whittle away some bits and when bad enough ever small victory is a cause for celebration.

    have courage, you show it and begin the journey. again ...manage expectations you have noted some of the most difficult modalities to treat along with some that they should help some.

    pax,
    ket

  5. #15
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    The "each bit helps" definitely provides some sort of mental positive. I know it does for me. On the other side of that thinking, I do get pissed off just wondering "how many more bits are there?"

  6. #16
    Senior Member alan's Avatar
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    Quote Originally Posted by ketamine kitty View Post
    i'm a complex pain patient too much and boring to list wth near zero relief for anything and mornings are scary. however a good doc will work on all the types and while likely unable to treat all satisfactorily each bit helps, hopefully they can whittle away some bits and when bad enough ever small victory is a cause for celebration.

    have courage, you show it and begin the journey. again ...manage expectations you have noted some of the most difficult modalities to treat along with some that they should help some.

    pax,
    ket
    None of mine ever could. I wish you good luck.
    Alan

    Proofread carefully to see if you any words out.

  7. #17
    Alan , you know i have zero relief near14 years and have tried every protocol and played guineapig for a brilliant doc and going to do it again in a few weeks, checking into beth while she tries some ideas. She must try.

    but she has not even started the journey and some of her descriptions are things that can be helped and so I encourage that she try.

    I wish you luck. Some of the really bad ones here have found some help, some of us haven't, but please try. I truly believe from your descriptions some of your pain can be helped but there is no magig bullet, and if you read what people take, their protocols, virtually every one is different. It is a journey.

    kindly,

    ket

  8. #18
    I also encourage you to work closely with a Doc. Sometimes you are lucky and you might have a SCI physiatrist who is really comfortable with pain management, or even a neurologist. I know several here work with Pain specialists, just be aware that some seem to jump into procedures and injections quite quickly etc.. which worries me because simplier things should be tried first. But regardless, if you find a doc that comes recommended by others and is an expert in neuropathic pain, than start there.

    My Dad takes gabapentin, tramadol, and cymbalta for his pain. Currently, his physiatrist, primary care doctor and neurologist all keep an eye on his pain and have suggestions. None of his meds worked well initially, and every one had to be increased to a higher dose (sometimes much higher) to get the best effect. Sometimes they were decreased once the pain was under control. When my father had terrible pain in the first few months after his injury, he had to be on very high dose of multiple medicines for several weeks/months, and then they were decreased once the pain was under better control.

    The downside of these meds often is sleepiness/sedation, so right now my Dad is tolerating more pain to take less medicine. His choice, and a common choice. We are constantly following his pain, and thinking about what can help, why it may be getting worse/better, and he is open to trying new things.


    A few things we have learned....

    It is rarely one medicine alone that works. The combination of a neuropathic pain medicine (eg. gabapentin) + an opiod pain medicine (eg. morphine/tramadol) can be helpful. Or sometimes combining the neuropathic pain medicine with just tylenol or an anti-inflammatory can be helpful.

    The ideal is to be taking medicines daily on a schedule for your pain that ideally take away the majority of it (I know... this is the ideal) and then to have another medicine at hand (usually an opiod) that you take when you are having a really bad day ("breakthrough pain"). Always keep track with how often you are taking the breakthrough pain med. When you are using it too often or needing more and more, then it is time to think about increasing the doses of the meds you are taking daily.

    It is always better to treat pain in its earlier stages, than to wait until it is so bad you are miserable. The longer you wait, the harder it will be to treat it. So if that means taking an extra pain med before you do your work out/a long trip etc.. that may be a good idea.

    Be systematic, and give meds a solid try before giving up. When you start a new medicine, give it a few weeks at least and have a clear plan about what to do if it isn't helping by a certain date. Keep track of your symptoms and side effects. If it isn't helping, then don't just stop it..... often this means you must increase the dose (under your doctors guidance), and keep increasing it stepwise until you gain the most benefit, but without having intolerable side effects. You may just need a higher dose.

    Sometimes side effects decrease when you give the med a few weeks, so sometimes it is worth hanging in before giving up.

    Some medicines are less effective over time, because your body becomes "tolerant" to them. That means you have to take a higher dose to get the same effects. Just be aware that it happens, and sometimes you will need to change your dose or your meds.

    Never stop a pain med suddenly on your own. Always talk with your doctor, and most will require a taper. It can be very dangerous to decrease some pain medicines too quickly.

    Always keep a detailed record of everything you tried. The name of the med, the dose, when you took it, for how long, and what was the benefit and what were the side effects, if any. Try to rebuild this history now - write it down - if don't do this already. This will help your doctor figure out what to try next. For example, if a previous doctor started you on neurontin 100mg three times a day and it didn't help 3 years ago, well your new doctor will realize that was a very low dose and helps almost no one. You DIDN'T fail that medicine because it was never used correctly. This happens all the time.

    It is clear for my Dad that his mood, sleep, exercise (too much or too little), and not enough stretching all affect his pain. Make sure you attack these issues as well if you aren't in a good rhythm.

    And sometimes the simple things help... just a warm/cold pack in the right location can do wonders. But be very very very careful not to hurt you skin and put these heating/cooling pads directly on your skin.

    Hang in there. I'm sorry you are going through such a rough time. Hope you can focus on taking care of yourself for awhile and get things under better control.
    Last edited by hlh; 06-01-2014 at 10:29 PM.

  9. #19
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    I just wanted to offer a hug My husband is a C6/7 , and has the same type of pain that you describe .He often says the same things that you have said in your post, about waking up in hell. We have tried a lot of things, and as everyone else probably said- its different for everyone where, how, and to what degree you will find relief. What works for one will not work for all. We hear a lot of advice that starts with .." I never took any pills ...". but.. sometimes I don't think these people understand what degree of pain we're talking about. Maybe I'm wrong , but at this point I dont see how anyone could continue on for years and years this way without any medication . I'm not disputing or arguing or anything like that, just saying that it doesn't seem like getting healthy is going to cure this unbearable pain - however, I can't say that he has really given that an honest shot either. Anyway, Xanax was our most recent blessing. It actually works. I think it may be the only thing we found so far that has. Lyrica actually did help for awhile, or so we thought. but the Insurance company decided that it was too expensive. Anyway, I hope you find something that works ..if i were you, I"d def try all of the above - health and pills, whatever it takes

  10. #20
    Everyone is different so I will just share with you what has worked for me. I started off on pretty much the same regimen as you, but it wasn't working. After a lot of iterations i

    - ditched the gabaprentin. it just made me stupid and did nothing
    - settled on methadone as an opiate. everything else was too strong
    - added valium

    For me at least the combination of valium and an opiod (methadone in my case) keeps my pain manageable and my brain in a state I can function. I still take baclofen as well, same dosage as you. I don't like pot, but I tried it and it made my pain worse (it was a hellish two hours where my feet felt like they were dipped in acid).

    Anyway, that is what works for me. FWIW. My belief is different things work for different people and you have to experiment to find what is right for you, the problem is with today's draconian laws with respect to pain meds finding a doctor willing to really help is hard to do.


    Quote Originally Posted by ECUrach85 View Post
    I have talked about my pain here and in many blogs. But when people hear that I hurt, they don't understand the severity. In the first moments when I wake up I would rather not be living then feel what I have to feel but it goes from a 10-11 to an 8 or so within an hour usually. I'm not being a girl. Most grown men would fall to the ground screaming if they felt what I smile through. It's more core that hurts the most. Burning from the outside all the way in. My whole body is tight and if I move my head, shoulder or anything it only aggravates it. Crying and breathing does too so when I wake up I don't move a muscle. Many days are unbearable to. It's the reason I can't work, make plans in advance, why I can't fall asleep...

    i otherwise have have a pretty good life but I know what the possabilities would be without the pain. I'd be able to dress myself, have more energy to drive, so many other things would be better.

    I was on 900mg of gabapentin 3x a day and 15mg of baclofen 3 times a day. I was still in severe pain so wondered what I'd feel with less meds. I now take gabapentin 3 times a day but 600/300/600. And 10mg of baclofen 3 times a day. Maybe it's worse?? But I look back and I've always had days where it was unbearable and days where I felt like I could function. I wanted to take the meds down because I got hurt at 24. So young to start these things and then to take them for the rest of my life?

    at one point I tried cymbalta but I don't remember feeling a big difference. Also tried tramadol but again..don't remember feeling better. I tried pot once but it made it worse. And lyrica for one night which made me feel like I needed to jump out of my skin and kill myself. Granted that was an epic 7 day stretch 3 years ago that will go down as my most painful week of all time. No idea why.

    I know now I have options but I'm scared to see a pain doc, scared that I try everything only to fail. I've read a lot about pain pumps too.

    now my worst experience is waking up. No exaggeration..even after nodding off for a few seconds. Something happens in our sleeping bodies that pisses mine off. I just had a minor procedure recently for something else and was so scared to be put to sleep. I was given pain meds and minor anesthesia. I woke up and there was minimal pain. So whatever they gave me through ifIV sure helped! I do not just want to keep upping gabapentin. What works for you for serious central pain?

    ignore any typos. I hurt and I'm tired

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