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Thread: New Member - a lil more info - Dr. Wise please

  1. #11

    for wise young

    Let me update you a little bit more...ankle was swollen again yesterday afternoon along with the calf a little bit. Today, pain is about a "9" with the bottom of my killing me. I also am experiencing stinging in my right hand which I have never before. Does this sound like a flare up of TM or syringomyelia to you? My blood sugars are fine as is my blood pressure. Each day is getting worse and my pain management is saying she's gone as far as she can with morphine (slow release) which I am taking 120 mg a day. Thoughts on this please...and thoughts on meds...I have an appointment with her on Wednesday the 7th. Thank you so much. It's so nice to have someone to chat with. I'm a little scared because each day seems worse. Happy Easter to you and yours!

  2. #12
    Hi Liz,


    I don't have any answers for you - but I do understand how frustrating it can be to feel the way you do and Dr's not sure on what could be causing it.

    I don't have a syringomyelia or TM but I did have issues with my c5/6 and c6/7 discs. I had servere spinal cord compression which neurosurgeon resolved with an acdf in June 09. However I still have pain, burning, tingling, numbness,in my lower legs and arms (elbows into hands). Yesterday both of my ankles and calves were also swollen and hurt like all h**l. surgeon sent me to neuro to check for MS But neuro said no evidence on mri's to suspect MS. So he believes my spinal cord is damaged from the compression. I'm now also in pain mangement because other Dr's are not sure what could be causing this. I will need to speak to him about legs now swelling and also a tight banding feeling in my lower right leg (it feels like there's a blood pressure cuff on the leg).

    I'm just wondering if your pain could be from the c5/7 discs even tho' it only shows mild on the mri's.

    Just wanted to let you know your not alone out there and hope you find some answers soon

    Liz

    Also have a disc herniated at t6/7.
    PrpleHarly08

    Was afraid I was losing my mind - So I asked the people behind my couch and they assured me I was still sane

  3. #13
    Quote Originally Posted by NCLizD View Post
    Let me update you a little bit more...ankle was swollen again yesterday afternoon along with the calf a little bit. Today, pain is about a "9" with the bottom of my killing me. I also am experiencing stinging in my right hand which I have never before. Does this sound like a flare up of TM or syringomyelia to you? My blood sugars are fine as is my blood pressure. Each day is getting worse and my pain management is saying she's gone as far as she can with morphine (slow release) which I am taking 120 mg a day. Thoughts on this please...and thoughts on meds...I have an appointment with her on Wednesday the 7th. Thank you so much. It's so nice to have someone to chat with. I'm a little scared because each day seems worse. Happy Easter to you and yours!
    If you are not already doing so, talk to your doctor about adding acetaminophen (Tylenol). It is synergistic with morphine. Be careful not to exceed 3000 mg per day because it is toxic to the liver.

    Wise.

  4. #14

    reply to prpleharly08 & Wise

    Prpleharly08 - let me know how that discussion goes on your next visit and yes, I have thought about the disc problem I have since the last mri in 09 said it had minimally progressed since 08..that's going to be something discussed.

    Wise...thank you so much for your continued attention. I will ask pain management about tylenol on wednesday of this week. This pain is honestly getting worse and worse and I really need to continue working full time. I do know, however, there may come a time I will have to quit...but not looking down...looking up!! always positive

  5. #15

    update

    pain has moved into shoulders and in between shoulder blades...arms propped up...feet propped up and neck on heating pad. Missed work again today. Pain management on wednesday...what in the world is going on? I hurt so bad! Any medicine opinions??

  6. #16
    I'm sorry you have been struggling so much.

    While the morphine/opiod medicines can be helpful for neuropathic pain (which it sounds like you have....), there are different medicines that you can use at the same time and may also help. Usually they are tried even before morphine. Have you been tried on neurontin or lyrica yet? Have you tried increasing your dose of nortriptyline to the maximum tolerated dose for you (i.e. the dose that doesn't make you so sleepy/constipated/dry mouth that you are uncomfortable)? I would start with those two possibilities. There are other neuropathic pain medicines to try if those don't help. Your pain doctor should know about them.

    good luck, and hang in there...

  7. #17

    to hlh

    Thank you so much for your input. I am on neurontin 1200 mgs per day. didn't like the lyrica...took the max of 3 nortriptyline and was having horrible "in color" dreams...lol..so went back down to 2. I was just curious as to what other pain meds people were taking...

  8. #18
    You are still on a very low dose of neurontin. Have you tried higher? How are you dividing it per day?

    My dad takes 800mg 4x per day (3200 per day). 4x a day is kind of inconvenient, but probably covers you the best (with each meal and before bed) but most people take it divided 3x per day. Lyrica is also very popular. I would make sure you titrate up to the maximum dose that is causing you relief, but not side effects.

    Yes, the dreams.... I've heard of that with desipramine (sister medicine to amitriptyline/nortriptyline) but not nortriptyline. For some people, if you take the nortriptyline in the morning, instead of at night, and you wont get the dreams. But if you get too sleepy during the day because of it, that's a problem. Another option would be trying the desipramine instead of nortriptyline, but taking it in the morning. It tends to be less sedating. But if you need it to help you sleep..... maybe a higher dose of neurontin at night may also do the trick.

    If you need more/these are not helpful enough, I would start to think about cymbalta. This would be particularly useful if you have any mood changes/depression in the midst of all of this as it can be effective for neuropathic pain and depression. And you would only be normal if you did! Other options are trying other anti-epileptics (which we have discovered can sometimes help with neuropathic pain) - topomax probably has the best evidence (but can make you dopey/cognitively slow.... but not everyone and women often love it because sometimes they lose weight), although tegretol and keppra are sometimes used. Valproic acid/depakote can sometimes be effective (more for migraines then nerve pain typically), but it makes you hairy and fat and most young women don't like that.....

  9. #19
    thank you so much for all this info...i will look into all of it

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