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  • #16
    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.

    None of mine ever could. I wish you good luck.

    Proofread carefully to see if you any words out.


    • #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.




      • #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, 10:29 PM.


        • #19
          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


          • #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.

            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


            • #21
              I hate mornings. Same reasons. I think fluids make a huge difference, as does exercise that stretches the muscles. I do the same pillow thing as deg and that helps me too. I see a pain doc and she saved my quality of life. But that's on the burning side of things, not the intense muscle stiffness and pain I feel in the morning.

              keeping the bowel under control is also huge, because if I don't I am for sure going to have serious left side pain that shoots all the way to my man parts. Not fun.
              2012 SCINetUSA Clinical Trial Support Squad Member
              Please join me and donate a dollar a day at and copy and paste this message to the bottom of your signature.


              • #22
                I basically hate from about 4AM to 3:59AM. I can Manage the space between.


                shadows are falling and I'm running out of breath WZ


                • #23
                  Interesting hearing how pot ups the pain levels...same here. Wonder about all the hoopla about that. Anyway, thought I'd throw in my pain solution...take no pills, and take a good look at how your BP stuff is going. My pain levels skyrocket as I need to take a dump, but once that is done, back to 'ok' levels. Ok for me is the usual tingling stuff, but nothing like that real bad nerve pain corresponding to the level of need to visit the throne.

                  I gotta wonder how the usual SCI packing chemicals up the wazoo to take a dump must feel like in real life...and how that might correlate to nerve pain levels experienced by SCI'ed people. Note that my BP is strictly reflex-type action, no chemicals, so it might be worth experimenting with trying something like this. Might save on the butt ooze not doing the 'prescribed' method as well.


                  • #24
                    I'm with the suggestions to see a pain Dr. Best bet would be to get recommendations from those with similar conditions (neuropathy, SCI, especially quads etc) locally. And even with recommendations you can end up with a poor Dr, I went to a neuro that someone recommended and found him horrible, my other Drs completely disagreed with him and so I was referred elsewhere after.

                    Even if you could possibly schedule with more than one pain Dr and see which one you think you're a better match with. Just make sure that you do not accept any narcotics or sign any contracts with either Dr until you've decided which one to stay with, and that the Drs know whats going on. I started out to do this after my pain Dr stopped practicing. I've had a history with some awful and some good pain Drs in the past, and also had issue with finding a clinic to take me on due to a complicated medical history. You may run into the same thing, I think some so called pain specialists only treat acute pain. And then there are some pain specialists that only offer one type of treatment, such as injections. So beware of that. Anyway, I ended up having a long wait because of my Dr just suddenly stopping practicing, and eventually ended up scheduling with 2 separate places (both great clinics with many in house options). I was going to go ahead and see which place I liked best, but it turned out that I liked the first place I went to so much I went ahead and canceled the appointment at the other place. Where I go has an in house imaging center with MRI, surgical suite for injections and procedures, and physical therapy center. Its by far the best pain clinic and the best pain Dr I've been with. So be aware that they are not all alike! And like t8 pointed out, it can be difficult to find ones who offer medication management due to controlled medication laws that are ever increasing. I wouldn't recommend contacting places personally asking if they offer medication management though, I assume at least some would think you were a drug seeking patient. So make sure to have your referring physician check for you.
                    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.


                    • #25
                      Originally posted by ketamine kitty View Post
                      I basically hate from about 4AM to 3:59AM. I can Manage the space between.


                      shadows are falling and I'm running out of breath WZ
                      Hah! I hate every day with a name that that ends in day.

                      Proofread carefully to see if you any words out.


                      • #26
                        this sounds similar to mine, though i guess i was too hesitant to acknowledge the IBS thing, especially as i have a regimen similar to Curt Leatherbee that i am very proud of and pleased with, i've even been growing my own probiotic cultures for a few years now. But i still have the occasional day where i'm completely usesless with it, inner thighs especially high into the groin, lower left abdomen and around the hips. i'm trying to save up for a number of doc visits and i'm wondering if it's even going to be worth my while to look into opiates or anything similar, especially as opiates tend to block up my insides, making the problem all that much worse the following morning.

                        I don't want something i have to take every day, but something that can get out of the pit with quickly. I also don't have much money to try too many different things. i do creative work from home and if i don't produce i don't get paid. it's gotten to the point where i'm taking so much downtime i'm about to lose the farm, so to speak. but i'm terrified that the pain will remain such a limiting presence i'll not be able to maintain my lifestyle (which is by no means lavish, but pretty cool all the same)

                        what's my best bet if i'm able to inquire specifically with the doctor? (that's usually possible here) and is it going to give me any sort of real relief with this kind of pain? (it's been a LONG time since i've had anything stronger than tramadol and i'm not sure if the heavy opiates treated the pain or just made me indifferent to it). tramadol screws with my brain chemistry too much, makes me manic and unrealistic but it does seem to help the pain to some degree



                        • #27

                          Come on. Don't tell Eurach her pain is mental. We get that enough. Central pain is not mental at all. You can recreate the burning component by injecting capsaicin which acts at the same ion channel as CP is thought to act. We can also cause Central Pain in lab rats by either damaging the cord with a drop weight or by irradiating with erythrocin B and then lasering the cord. The rats then try to chew off their legs to stop the pain. Central Pain is the most severe pain state known to man. It is just not polite to tell someone their pain is mental. You must take people at their word. If you see a paralytic who has lots to complain over and mourn, if they say their pain is worse, what incentive could they have to speak of something invisible when there is so much which is obvious.

                          I am sure you mean well and I respect your viewpoint but it would appear that you do not understand the burning of Central Pain. You are not alone. It is kind of the default reaction to something which very few will ever experience, lucky them. See Grange's thread about people being tired of their pain and I think you will come away with a different viewpoint. Central Pain people would all rather buy Hidef TV's than our meds but we have no choice. We have to live. Thanks.

                          P.S. Maybe you mean something different by "mental" than I do. Not trying to put you on the spot.
                          Last edited by dejerine; 08-20-2014, 04:21 AM.


                          • #28
                            Mr. Dude, have you ever tried any of the neuro pain meds such as neurontin, lyrica, Cymbalta, et all? You also mentioned not wanting something regular but something to get out of the pit when needed. If this doesn't happen very often, maybe toradol would be an option. It's a non narcotic nsaid that works on severe pain but cannot be taken long term. I'm on narcotics daily, and when I end up in the er for something acute causing severe pain I'm given toradol by iv. I've also been prescribed it for a short period, however I have severe stomach issues and cannot take nsaids. I thought maybe I'd be OK and try it just once, but it's not for me orally lol.
                            Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

                            I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.


                            • #29
                              Yes I assure you all this is not mental, it's not IBS, it's not caused by anything but this stupid SCI. I'm so nervous about the doctor. I was referred by my physiatrist at UNC to the UNC pain clinic. Hopefully they know what they are doing because I am looking for medicine. I hate meds and take less than prescribed but that's only because what I was taking wasn't doing ant better so why poison my body. I'm so so scared of this pain.

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                              • #30
                                Hello all... i can assure you this pain is not mental... it's real very real... i deal with this neuro hell daily with very little refief from meds.. I have tried Gaba , lyrica... lyrica was evil in a bottle for me.. I keep my med list to what puts me to sleep at night and keeps me to sleep they entire night... from what i have noticed about my self.. is exercise , warm water when the legs turn purple , not allowing my self to get to stressed out and eating properly all help me cope with this neuro hell... I had a syrix and it did alot of damage and since then i have had to deal with this pain... i have been injured almodt a dozen yrs now , always had some level of neuro pain ,but not to the level it is now..
                                i personally would not go to pain management , they are only going to give meds that end up taking a person more away from life with the same amount of pain with more problems...