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Thread: Pain....It seems to be getting worse...

  1. #11
    Hrm. Lets see. I have a thoracic injury just like the poster. I was experiencing similar problems. I went to a PMR doctor at the Mayo clinic, who referred me to a seating specialist (not a pain doctor), the seating specialist solved my problem. Since I have direct, relevant personal experience with this I can rightly say your advice is bad. She may actually need some sort of pain medication (I do to stay in my chair for extended periods of time) but that is not the place to start. The place to start is with a doctor or physiatrist who specializes in SCI and a PT or seating clinic to get a properly fitted chair.

    You don't go to pain doctors to get referred to seating clinics, doctors refer you to pain clinics. The OP is not experiencing neropathic pain so it is a very good bet that this can be solved without any sort of pain medication.

    Look, I don't go on EDS websites and post advice about shit I don't know anything about, kindly return the favor. I have a similar injury and direct personal experience with what this poster is experiencing. Your back pain has absolutely no relevance to what the poster is experiencing. Have you looked at her in her chair? She swims in it, it is not a good fit.

    And just to be exact (since you like to be) someone else asked if she had a pain doctor, you were the one who told her to go to one.

    I usually find your posts amusing (I loved the one where you told a quad who posted how much he hated his chair that you just "loved" you chair, I am sure that helped him immensely) but being this is the pain forum and I moderate it if I see bad advice being given I will step in.


    Quote Originally Posted by ~Lin View Post
    Its not bad advice and I wasn't the first one to say it. I think she should see a pain management specialist in addition to having her chair fit. But she's not going to get proper pain advice from a non pain management physician. A good pain management specialist will send her to a PT or OT about having the chair fixed if its causing pain. They aren't all about drugs, which is why you go to the specialist and not just a regular Dr who is unfamiliar with treating non acute pain. Non drug options should be exhausted prior to taking pain medications long term. No pain management Dr worth their salt would start and end with drugs.

    As for what I do... My chair is set up to reduce back pain. I can tolerate sitting in it much longer than anything else, so I agree your chair needs fixed first. Outside of that I have PT at the pain center and am being evaluated there for a new back brace, but I doubt my insurance will cover it. Further uncontrolled pain is handled by medication but I've been in pain management for over 10 years.

    I would start with a pain journal to document when it hurts, what the pain feels like, how long it lasts, what you were doing when it started (such as x amount of time in chair), what makes the pain worse, and what makes the pain any better.

  2. #12
    Senior Member NW-Will's Avatar
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    Which insurance do you have?

    Where abouts in Oregon are you?

    Only from my experience, you have to find a PT and chair specialist who are willing to fight WITH you to get a chair that fits you. Not sure where the 5 year term comes from, but if the chair is not right for you and is causing you problems then you NEED a new one. Still say you get your self a pain doctor, in the mean time you've got to deal with the pain.

  3. #13
    Senior Member ~Lin's Avatar
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    And I've been in pain management for much longer than you and can rightly say your opinion on how it works is incorrect and possibly dangerous by advising someone with pain NOT see a pain management specialist. If the chair is the problem it would be determined in pain management as well as by a PMR. Just because she has the same level injury as you does not mean she has the exact same experiene as you, if so you would have advised her to start on the same medication you're taking. There are many more types of chronic pain experienced by those with SCI than neuropathic pain and it doesn't take someone with SCI to know that. She requested advice for pain and I gave it. I would hate to see someone suffer needlessly for pain because it took years to finally see a pain management physician. But unfortunately I see it all the time. I'd rather someone see a pain management physician twice and be all fixed up and never need to come back, than suffer in silence for ages before finally seeing one.

    And I find it funny you seem to break my posts apart to pick at things you want to argue with, and not read the entire posts or attempt to understand them. I advised in my original post here that she solve the fitting issues even giving a solution to the issue of footrest height. I have not seen her chair, there are no photos in this thread. You say she's swimming in it so you must be responding to more information than was given here, as she claimed it was fitted perfectly to her other than the height issue. In the thread you're referencing, I was purposefully drawing attention away from the quad's wheelchair as the problem (multiple replies above mine merely suggesting to get a new chair, which did nothing to address the quad's actual problem) to draw attention to the issue is the hate for his disease and current situation, the chair is merely a reminder of that and what chair he owns has no affect on changing how he feels. It doesn't take another quad with an identical injury to understand that, and I understand it perfectly and feel the same way minus hating the chair as a representation of what I've lost. To me the chair is a representation of what I've been able to gain back despite what I've lost. I hate my medical condition, not my adaptive aids.
    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.

  4. #14
    Ok maybe I am not asking the right question.
    I get that a chair can cause the pain, but I rarely use my manual wheelchair because I don't like it.

    So what do you do for pain management?
    Do you do certain stretches, take certain pills, lay in bed, ect?

  5. #15
    Senior Member ~Lin's Avatar
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    Quote Originally Posted by Para-Horse-Girl View Post
    So what do you do for pain management?
    Do you do certain stretches, take certain pills, lay in bed, ect?
    All of the above. Thats why I suggest starting a pain journal so you can start keeping track of whats causing the pain, what makes the pain worse, and what helps the pain. If it comes to needing pain medication then this information will be incredibly helpful for the Dr.

    Have you tried anything to help the pain yet? Does laying down help it? A PT can show you stretches or exercises that can assist with whatever your specific type of back pain is. It may take a couple visits to determine which stretches or exercises are working for you though and which are not, so if the first ones you get exacerbate the pain for example just stop and speak with the PT, don't give up. Unfortunately it can take time to find what helps. Have you been evaluated for scoliosis?

    Do you have full sensation in the areas where it hurts? Ice or heat can help pain, but should not be used anywhere that you do not have full sensation in your skin. There are also more environmental changes that may be making your pain worse than just your chair. Since you don't spend much time in it, where DO you spend most of your time? Do you have a special mattress or topper? Where the pain is exactly and what type (muscular, joint, nerve, etc) also affects what types of things can help. So the more you could describe the pain here would also help people give suggestions for it.
    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.

  6. #16
    Quote Originally Posted by ~Lin View Post
    All of the above. Thats why I suggest starting a pain journal so you can start keeping track of whats causing the pain, what makes the pain worse, and what helps the pain. If it comes to needing pain medication then this information will be incredibly helpful for the Dr.

    Have you tried anything to help the pain yet? Does laying down help it? A PT can show you stretches or exercises that can assist with whatever your specific type of back pain is. It may take a couple visits to determine which stretches or exercises are working for you though and which are not, so if the first ones you get exacerbate the pain for example just stop and speak with the PT, don't give up. Unfortunately it can take time to find what helps. Have you been evaluated for scoliosis?

    Do you have full sensation in the areas where it hurts? Ice or heat can help pain, but should not be used anywhere that you do not have full sensation in your skin. There are also more environmental changes that may be making your pain worse than just your chair. Since you don't spend much time in it, where DO you spend most of your time? Do you have a special mattress or topper? Where the pain is exactly and what type (muscular, joint, nerve, etc) also affects what types of things can help. So the more you could describe the pain here would also help people give suggestions for it.

    I will try to remember to do a pain journal.
    Laying down helps a ton, in fact it is the best way to get rid of the pain.
    I was evaluated for it when I was younger.
    And yes I have full sensation. (just to clarify for everyone I am a T10 para)
    It feels like most of the pain is in the area of the rods.
    I spend more time in the electric scooter and the power wheelchair.
    I have a memory foam mattress topper.

    sometimes it is muscle but most of the time it is just where the rod are (sorry never been good at explaining that)

  7. #17
    Quote Originally Posted by Para-Horse-Girl View Post
    ...But lets get back to the point of this
    What do you do about your back pain!?
    Based on the fact that your back pain (which I'm assuming is physical and not neuro) becomes unbearable after 4 hours in your chair, and the issue regarding the cushion and footplate adjustment of your chair, I think that your chair has a lot to do with your back pain. Perhaps it's worth doing some experiments with your chair set-up before going to any expense or contacting your insurance company. Is there any chance of borrowing a chair for a few weeks that is set-up a bit better? If not, another possiblility is to put some padding on your footplate to bring the height up so that your feet are resting correctly for a few weeks to see if there is a reduction in the pain?

    I also have pretty bad lower back pain and I have reduced it as much as possible by making sure my chair is set-up correctly and experimenting with different cushions. I have found that a low profile Roho is best for me. I also tried a hard backrest (Jetstream, carbon-fibre with foam padding), but I found this only helped a little bit and wasn't worth the hassle of getting too hot and sweaty (it get's pretty hot where I live).

    Edit after reading your post that just came in: I'm a T12 with rods from T10 to T12. My rods give me some pain, but the lower back pain is below the rods.

    I hope this helps. Good luck,
    Clayton
    "Wheelie Wanna Walk!"

  8. #18
    Senior Member ~Lin's Avatar
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    Is it muscular, in the muscles around the rods? If you can even tell what its coming from. I'm good at being able to tell if its the joint/bone or muscles hurting by what the pain feels like. If its muscular heat can help, again make sure you're only using it where you have full sensation. Can you take a bath? Hot baths can help. Moist heating pads are good. A PT can do deep ultrasound heat which is helpful for pain.

    Is your mattress topper enough? Or do you ever get pain in bed or when lying down for long periods? You mentioned putting a cushion behind your back helps, have you tried doing that when laying flat on your back as well? I have to have support for my lower back when laying flat on my back, for me I think its due to excessive curvature though. I'm much more comfortable laying on my stomach.

    I'd be evaluated for scoliosis again. Its something that can develop over time, especially when you've had surgery/rods and bad seating. If you have scoliosis say above your rods, maybe that could be the cause of the pain. I'd also see if you could make an appointment with or at least call the surgeon that put the rods in and speak to them about it.

    Pain really, really, sucks. You're not alone and I hope you can find some relief soon. Being young and disabled is lousy, chronic pain is even worse though. I think I'm not too much older than you, I know I've read some of your past posts and watched some youtube videos you had since you're a rider. Thats the worst part for me, horses used to be my whole life. Are you riding at all these days?
    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. #19
    Senior Member McDuff's Avatar
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    P_H_G, I'm a lot like you, except I'm an old fart but only 9yrs in sci. I have rods from T8-T12 with a burst frac of T-10.

    My pain too begins to get worse as soon as I get out of bed, I have a couple different chairs and it doesn't matter which chair, it just seems the fact that sitting intensifies my pain. I have neuro pain, the leg tingling/needles and the butt on fire, and I also have what I call mechanical pain which is the real muscular/joint stuff. This starts in my back below my break line, which isn't too bad because I have only partial sensation, but it works it's way up my back and gets into "live" area and makes my back scream. And yes, 4hrs up seems to be the "sweet spot", and laying down at that point is the only relief that works.

    I am on a cocktail of meds to try and keep it to a livable level, but it only partially works, but better than nothing. I also have a baclofen pump which we are now adding morphine, and about to add a 3rd drug to try and attack the pain this way.

    Other than all that, the best way to fight the pain is to keep your brain active on other things, I know it sounds trite but it really does help. Even playing a video game or something will help. But yeah, pain has pretty much curtailed my life/career, I had to retire as there is no way I can handle a workday anymore.

    Good luck, I hope you find some relief.
    "a T10, who'd Rather be ridin'; than rollin'"

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