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Thread: Ok it's time to seek help

  1. #21
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    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.
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  2. #22
    I basically hate from about 4AM to 3:59AM. I can Manage the space between.

    ket

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

  3. #23
    Suspended Andy's Avatar
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    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.

  4. #24
    Senior Member ~Lin's Avatar
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    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.
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  5. #25
    Senior Member alan's Avatar
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    Quote Originally Posted by ketamine kitty View Post
    I basically hate from about 4AM to 3:59AM. I can Manage the space between.

    ket

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

    Proofread carefully to see if you any words out.

  6. #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

    thanks

  7. #27
    rim

    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 at 04:21 AM.

  8. #28
    Senior Member ~Lin's Avatar
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    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.

  9. #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.

  10. #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...

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