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  • 9+ years with arachnoiditis and still fighting!

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    Old 01-21-2018, 06:50 PM   #1
    retired triker
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    retired triker HB User
    9+ years with arachnoiditis and still fighting!

    I have had 7 spine surgeries, at least 9 myelograms, NO trigger point injections, and it all started with an x husband that broke my back in 2 places in 1980. In 1993 I was in a wheelchair in level 12+ pain for 7 years until 2000. I have taken everything from Tylenol to fentenyl and in 2000 I had a dorsal column simulator installed. It was a lifesaver. They did it to relieve the pain and said I would not be out of the chair but would feel better. Well, being the fighter I am, I decreased the meds tremendously and I worked my way out of the chair and learned to deal with the leg pain and weird numbness while on my feet! It was a miracle!

    The last myelogram in 1996 showed I have AA. The stimulator (#4 because I wear them out) stopped working in late 2016. The pain level has risen tremendously. I can't take most opiats (33 years c & s) and the tramadol barely cuts the pain. I am too stubborn to stop walking and my doctor says to stay on my feet as long as I can. I went to the pain clinic but won't ever go back!! They were lucky I didn't report them to the medical board I was so furious. My family doctor was willing to work with me on the treatment. I refuse to load up on antidepressents. I am not depressed! I use the muscle relaxer before bed and the pain meds during the day.

    My question: When I sit on my butt all day long and do next to no walking, the pain is manageable. If I get up and walk around any more than 5 to 10 minutes, by evening time the pain is raging and I may get an hour sleep at the most because my back to my toes feel like I am being tazed constantly.

    Should I be using a wheelchair again? I hate the thought but I don't want to be a shut-in. Also, I don't think a regular wheelchair would help because I would have to push the wheels. A friend gave me an old power chair and hubby and a friend are building a ramp. I will have to get a vehicle and batteries if I should have to use it all the time. I just don't know what to do. This is very frustrating! I used to be a very active trike riding happy person. Now all I see is a couch, tv. heating pad and pills. This is NOT my lifestyle. Please help!

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    Old 01-31-2018, 05:39 AM   #2
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    Re: 9+ years with arachnoiditis and still fighting!

    Hi triker!

    I understand the pain you are describing. I call it the “I just backed up to a 1,000 volt electrical plug with an open wound” bc that’s how it feels to me. Like I’m being massively shocked and can’t move away from the electrical source. I’ve had AA since 1982. From research i have read and from the dr who diagnosed me it is very typical of an arach patient to not be able to stand or walk except for a few minutes and that’s exactly what is happening to me except sitting causes it for me now and bc of the tightening grabbing pain from waist to feet that increases the longer I sit or stand I mostly lay down bc the tightening pain instantly starts going down when I lay down. I do things like cook or clean in small time shifts basically taking lay down breaks. I worked with AA for 23 years before the pain became too unmanageable for me and i had to start pain management. Hot baths help me and floating in a pool or ocean helps relieve some of the pain even more. Your story is very inspiring and I’m so glad to hear the stimulator helps you! I am fortunate to have several arach friends in a lunch group to share ideas, support etc in person face to face and have many arach friends in support groups and it’s my understanding that most that use wheelchairs do so intermittently especially during times where a lot of walking is involved. Both of my legs are numb and my feet yet i can still walk and i will only consider a wheelchair if the pain or numbness prevents me from balancing to walk but if it enables you to function better in certain situations or for work then it’s just another tool to help you. My neighbor was born with spinal nerve root damage and her symptoms are the same as AA except without pain and she has completely gone over to the scooter and has the van and it enables her to shop,go to church etc more than I can. I’ve never been depressed either but I do find that i feel more isolated. I understand what you mean by this isn’t my lifestyle but there are still places to go and people to see, lol. We have to adapt and stay strong!
    P.s. One more thing I forgot to say is do you take a muscle relaxer when you get home? Baclofen is a new med for me that really helps to relieve the shocking and tightening pain. Oops I see you do take a muscle relaxer at bedtime. Perhaps your dr could suggest one that is least sedating to take in the evening.

    Last edited by Administrator; 01-31-2018 at 08:41 AM.

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