Having problems with message search?
Hi Lisa, Good to meet you as well, perhaps we here can offer each other things we find helpful with regard to pain and how we live with this "annoying problem" as a doctor at Mayo clinic called it having nothing else to offer! It was hard to believe we traveled several hundred miles and stayed in MN for 2 weeks of tests at Mayo and at the end all they could say was I have an "annoying pain problem". Well in truth that's what it really is but sometimes the truth is hard to take. We want answers, something to fix the problem, in these days of modern medicine surely a pain problem could be fixed... nope!
When I get a big flare up the most comfortable thing for me is to keep walking, pace through the house for hours on end. However I have learned that if I keep walking like that the problem slowly gets worse due to fatigue, same thing happened when I tried to keep working and "Push Past the Pain" like the pain doctors kept saying. I would push through the pain in the morning my keeping active but then again I was also pushing against the fatigue of Lyme disease that I didn't know about and at the end of the day I was in so much pain I could do nothing but curl up in bed and moan, it was awful. I think anyone in chronic pain has a lot of endurance to put up with it, sort of like running a marathon with no one else running or watching. Most of the time if I lay down it's very uncomfortable too, it feels like I need to keep my spine moving or the pain keeps building up till I can't stand it. But what it one to do? We have to sleep once in a while! I tried some sleep meds Ambian and Klonopin which helped until they wore off and I woke up in pain. I also never felt very rested after sleeping with meds so I was tired and drowsy all day long.
I have learned how to lay still until I fall to sleep without drugs and even in pain but it's not easy at first. I started by resting for short periods of time, sort of like when someone starts up with a physical program like distance running, start out slow and build up your endurance. With sleep and pain it's more to build up the ability to relax and lay still, it's more in the mind than the body. For the first few weeks I would lay down at night for only a few hours at a time and get back up when I could no longer put up with the discomfort, I needed to be completely tired and sleepy before I could fall to sleep so I would stay up most of the night and sleep when I could.
Begin by getting about 6 or 7 pillows in bed and keep adjusting the pillows to support arms, legs and what ever it takes to get the most comfortable. After a few minutes if a slight discomfort comes up, make adjustments till it's gone and continue till I fall to sleep. For me I start laying on my back with a pillow tight on each side of my ribs almost lifting my spine off the bed, I also put pillows under my legs and even one over my chest to rest my arms on crossed over, for some reason this works! If I move to lay on my side I put one pillow in front of me to lay my upper arm over, one in the back tight against my spine to lean back on, another under my upper leg to support it and one pillow under my head to hold it so my neck is straight.
The key for me is to concentrate on how I feel and notice every slight discomfort and keep making even the smallest adjustments to support so the discomfort goes away. There is usually one position that makes the back pain go away at least for a short while and that's the position to start with. I've been doing this for about 6 to 8 months and now I can go to bed and sleep for 6 or 7 hours and get real sleep without drugs. When I wake up it's still awful, lots of pain and I'm quite stiff for the first couple hours, I hate waking up but at least I'm getting sleep through the night now and I feel like I'm going in a forward direction with my life of pain.
Funny thing too I was very physically active when the pain hit but I sure don't think the activity was the cause of the pain. I was about 32 years old and an avid speed skater, I was skating on racing style Rollerblades about 24 miles a day and my average speed was 15 to 18 miles per hour. I was skating with a bike club, they were on bikes and I was on skates, I would just get in line and keep right up with them for about 24 miles. I was also a distance runner and would run 8 miles at a time on the rain days and winter when I couldn't skate. I felt great, best shape of my life, strong as ever, etc etc. Then I started to have mid back pain, it got worse and my whole life started to change. It's now 11 years later and I feel like I'm still in an endurance race everyday just staying ahead of the wall of pain.
Everyone have a good weekend, I might even try to go to a parade! Jeff
On Wed, 2 Jul 2003 16:10:59 -0400 "lisa pierce" <lisacare@...> writes:
hi Jeffrey,My name is Lisa, I am happy to hear of someone with a history simillar to my own. I have had 4 MRI's all say arachnoiditis. I want it to be anything but that. My symptoms also came on gradually. I was actually doing full contact kickboxing. I was preparing to spare. When I pulled a mucle in my leg. (ha, ha, ha) well it never got better. I also feel bad I am very functional form what I read. I am a nurse and I still work 3 days a week. I pay for it frequently. It takes two or three days of little activity but than I am fairly good. It seems to be progressing over the past few months the pain is more constant and keeps me from resting. I find lying down makes it worse. Standing seems to be the most comfortable but I feel like my legs might just quit working sometimes, thankfully they always keep going. I pray a lot, I rest a lot, and take meds more than I want to. I have spent the last two years trying to convince myself that something elese is worng but I fianaly accept that it's arachnoiditis. Now I just pray it won't progress any more. Thanks for posting your story it made my feel like there are others like me. having this pain without surgrys makes it seem almost less to me so again thanks for your story and to listening to meLisa Pierce
Offline 
Send Email