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Help! My legs are unbearable

Challenged legsCChallenged legs Posts: 1
edited 07/08/2015 - 9:31 PM in Pain Medications
I have had multiple surgeries on L4-L5 and L5-S1 but no fusion so my spine isn't stable and I have mega nerve damage. They've thrown around MS but I refuse to accept it. I get selective nerve blocks every 8 weeks, do acupuncture, watch my diet & take pain meds. The muscle spasms are out of control and robbing my of my life. I would cut my legs off if I could. They have attempted to change up my Meds, but insurance is making it difficult. I am currently on Morphine Sulfate ER 15mg 2xday, Percocet 10mg 4xday and baclofen 15mg 1-2 times a day. I haven't slept in a month and tomorrow my doctor is doing another nerve block after only 2 weeks. I have to function. I have kids and a life to live. I'm not taking extra Meds or running out. They don't work so I'm not even always taking the full allotment. I've been on the two pain Meds for about 2 years. Does anyone have any suggestions on what I can try. I don't want to be sleepy all day if possible. I'm only 34.


  • LizLiz Posts: 7,832
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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Hi. I've got little kids. Ugh! It's so bloody hard physically AND mentally for me. I know! I truly do. The first thing that jumps out is the MS....why haven't they tested & ruled that out? It's a common suspicion, they usually get that out the way. The other thing is you're describing a lot of nerve pain. Have you tried any of those meds, Lyrica, Gabapentin, Savella etc? I can't tollerate them so I've got a compounded prescription cream that helps. There are lots of options.
    I know what you mean about insurance companies. I've wanted to try Celebrex for ages but my insurance companies refuse. Ugh! Your docs can persevere with that. Sometimes it's as simple as a coding issue or just providing a bit more info. You calling the insurance direct can help.
    That's a lot of blocks! Is fusion surgery in your future? I know it's so incredibly hard with little kids but I've got permanent nerve damage. It could be worth a few consultations with board certified surgeons to see if they have any better ideas. Not necessarily for surgery. Sometimes a new pair of eyes can make all the difference.
    You're probably experiencing some tolerance to your meds. I change meds rather than increasing doses. I've found that I can get more relief from a lower dose of a different med. I've cycled through most narcotic meds a couple of times (except methadone) I was taking Tizanidine for years. It worked great until I got a bit tolerant so now I'm taking Baclofen. I take it 3x a day.
    Even little things like trigger point injections help me a lot. Both work but I find the Botox + steroids lasts longer. You seem to be stuck with your treatment. It could be time to mix it up a bit. As I said a new pair of eyes might help.

    Best of luck. Please let us know how you get on. Chronic pain isn't just physical. I've struggled with the mental & practicle side of things just as much. I saw a chronic pain psychologist & she was great at offering coping mechanisms to deal with the everyday struggles like driving my son from school. It was also great to have someone to talk to who really understood. That's why I'm a member of this forum. I found my pain very isolating. I've made some great friends here. It's so important to have people just to cry & vent to sometimes. Pain can take over your life. I hope you stick around. It's been priceless for me. We've had some great threads on being a parent who suffers. You can search at the top of the page. ;-)

    Note. Sleepiness is a common side effect of many meds. It usually goes away for me after a week or 2. It's worth sticking with things for a while (& dose adjustments) if that's the only negative effect.
    Osteoarthritis & DDD.
  • Baclofen dose is normally 3 times daily, and often 4 times a day. I currently take it 3x/day, and feel my legs and arms start getting spastic around 6 hours or so, so have just been given permission to go to 4x/day. Would that help you? Obviously, ask your doc if you think it might help and notice improvement the first 4-8 hours after a dose.

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • By the way - I had to find a magic dose for myself with baclofen. I still had too much spasticity and clonus and crazy reflexes at 5 mg per dose. The 10 mg dose made me way too loopy, even when I had taken it for a few weeks. The 7.5 mg (so 3/4 tab) was the magic dose for me.

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • Hang on to the thread of hope and don't give up. If all else fails stop what you are doing and go to sleep.

    I would suggest a combination. Hit it with Nerv meds, ant-spasmodics, narcotics, ambien, and limited waking hours until it lessens. You might need to accept an MS designation for insurance purposes so put away the pride and take it.

    And don't forget the age old sayings about laughter and sleep, get plenty of each.

    Best wishes.
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