I do not have a lot of experience in posting to these forums but will give it a try
For starters here are the diagnosis I have
Lumbar Spinal Stenosis (3 levels)
3 bulging discs a L1/L2. L2/L3 & L3/L4 with spinal cord effacement
Full loss of spinal curvature in the lumbar region
Thickened ligament flavem
Facet Joint Hypertrophy of all 6 of the facet joints in the lumbar region with fusion starting
Suspected Anklyosing Spondylitis (Dx testing underway)
Microscopic Colitis (CC)
As far as meds
Note: can't take NSAIDS with the Crohns and Colitis per my Gastroenterologist
Imuran 100mg daily
Allopurinol 100 MG daily (to help the Imuran)
Atenolol 50 mg daily
Oxycontin 15mg 2x daily / every 12 hours for pain
Lidoderm patches for the lower back
I have been seeing a pain management doctor who is a anesthesiologist who is trained in pain management. He does not work full time in PM doc but like all of the doctors at this PM center gives a certain percentage of his time to the group.
About every 8 to 12 weeks I have been getting an epidural steroid injection with 80 to 120mg of Kenalog-40 usually at the upper portions of the lumbar region using the transformal approach
I usually get about 2 to maybe 3 weeks relief that is reasonable and a LOT of mood swings, sweating insomnia etc.. and of course each time I usually gain about 7 pounds. Since starting in October of last year I have had 6 of these injections done, each with about the same result.
The pain I experience is mostly in the lower back and pelvic region in the hip joints. Overall making any real activities not possible.. I can't drive for more than about 45 minutes without pain, stand for about 15 minutes without pain and both upper legs going numb from the knees up.
Laying down is the most comfortable, but can't lay on my back without my legs going numb from the knees up and can't lay on my sides without the hips hurting. Overall sleep is a problem.
My pain doctor does not want to increase the dosage and does not want give me anything for the breakthrough pain (due to the Crohns I cannot take NSAIDS) although he wants me in physical therapy which causes a lot of pain the night and day after. He also would like me to consider doing without pain meds altogether and rely on the steroid injections which have minimal long term effect.
My PM doc is willing to prescribe the 15mg oxycontin as long as I'm able to receive the epidural steroid injections.
The 15mg Oxycontin has minimal effect and is only really useful in reducing the pain while I am laying down, it does nothing if I try to become active.
What I am trying to do for myself and is helping a bit, is using swimming as a form of excercise and have a adopted a low carb diet with has worked wonders for weight loss. I also use meditation to help deal with the chronic pain.
Overall I am at my wits end...I have missed my daughters college graduation and my sons graduation from the Air Force Academy. I'm in bed most of the time while I'm not at work. Fortunately I work as a physicist at MIT which accommodates a very flexible schedule. Almost any other job I would have had to leave by now.
The question is what do I do?? Why is it so hard to manage pain from a well documented condition (MRI and CT)
Any suggestions?? I really could use some advice right now. It his has been going on for about 8 years now at a lower level and has been 'critical' for about a year now. It took almost 7 years just to get the MRI and CT.