- CASE FILE
I have been living with chronic back pain for over 10 years. I have no life. I spend 12+ hours in bed every day. I can't get a diagnosis.
ABOUT THIS CASE FILE
As you can see I have so much going on. I couldn't even add all my symptoms because they are not options. I’ll do my best to spell it out but it’s difficult to explain it all, especially in writing. My mind constantly skips from one problem to another and back again. Many issues are interconnected. I can’t even count how many doctors I’ve been to in the last 20 years.
When I was in high school my lower back would start to hurt after working several hours. I didn’t think much of it at the time because I wasn’t very active so I just thought it was because I was on my feet and my body wasn’t used to it. Once I started doing office work I was fine. In the summer of 2001, when I was 21 years old, I got pneumonia. I was pretty sick for a couple of weeks and my back started to really hurt. I went to the doctor and they thought it was from coughing so much so they gave me a muscle relaxer, which didn’t work. I kept going back to the doctor for the back pain and they just kept giving me different muscle relaxers that didn’t help. It was so bad I had to go down to part-time hours. After a few months, it got mostly better and I returned to full-time.
Less than a year later I got pregnant and my back pain got worse again, back to part-time work. After having my amazing son I changed jobs and was working about 30 hours per week and my back was mostly doing well. A few years later it started to hurt again and I went back to the doctor. They referred me to a pain specialist who did an MRI and X-rays and numerous injections. I also went to the chiropractor and did physical therapy. Nothing was helping. I thought I just needed to strengthen my back and I had always wanted to try martial arts so I started doing Tae Kwon Do. My doctor also thought it could help. For a couple of years I struggled through the pain and worked toward getting my black belt. About a year away from getting my black belt I couldn’t take it anymore and had to drop out of Tae Kwon Do. I was very disappointed.
My back continued to worsen year after year. I was prescribed pain medications that had to continue to be increased. I have had numerous MRI’s, X-rays, injections, chiropractic treatments, physical therapy, and more. I’ve seen every pain specialist that would take me within a 2-hour drive of my city, plus other specialists for other issues. I can’t get a definite diagnosis, much less treatment. I just had another MRI about a month ago. The results state there hasn’t been much change since my 2016 MRI but my pain has gotten much worse. The MRI results show annular tearing, disc dehydration, and arthritis but nothing that stands out and says “this is what’s causing your pain”.
About a year and a half ago I had a pain pump implanted. I am greatly afraid of surgery but I had to try it. I tried not to get my hopes up because I’ve been disappointed so many times but I couldn’t help it. I was hoping I get some of my life back. The pump did help, a little. I would no longer wake up in pain throughout the night (until a couple of months ago when it started happening again). I still wake up for other reasons but at least not from pain. During the day, when I’m doing anything at all, even just sitting up, I’m in constant pain. I’ve tried several different medications in my pump but so far most have caused intolerable side effects. I’m no longer hopeful at all that they’ll find a medication that works. For some reason, no medication has been able to help with active pain. Medications help but nothing has made it possible to do more than a little bit each day. I’m in bed 12 hours a day because of the pain.
All my health problems added up, especially my back, has made it nearly impossible to have any life at all. If it wasn’t for my son I would be dead. I wouldn’t be alive suffering every minute of every day if it wasn’t for my son. I wouldn’t work, I wouldn’t cook or clean, I wouldn’t socialize at all or go anywhere. Every day I have to make the choice to carry on. Some days I’m only able to do it from my bed but I do. Not being able to do things with him and having to rely on him for so much is what makes all my health problems depress me the most. I try to play catch with him but after a few throws, the pain is already pretty bad. I fight through it, for him. I have to continually take a break and sit down but I force myself to get back up as much as I can. I’m in excruciating pain by the time we’re done but I’ve spent time with him. I can’t even sit on the floor and play legos or a card game with him. I can’t sit on the floor.
I’m on disability, was awarded on my first attempt, but I work a few hours a week. I love my job and want to be able to work more hours.
Along with the numerous MRIs, etc. I have had more blood drawn that I can remember. I’ve had so many different tests done, been to different specialist including Internal Medicine, rheumatologist, pain specialist, and more. I can’t even remember all the doctors I’ve seen.
I can’t do anything I enjoy doing without pain. Obviously, anything physical causes me pain. I can’t even shoot pool or go for walks. I can’t color because it hurts my hands. As much as I love my son and don’t want to hurt him I don’t know how much longer I can live like this. If I didn’t love my job I wouldn’t bother going anymore. My son has basically become a hermit, like me, and I don’t want to see him end up like me. I have no friends because I can’t do anything. I play pokemon go as my only way to socialize but I end up missing out of a lot of events because of my health. They know they can’t count on me to attend things. I’m always concerned that something will trigger a migraine, or I’ll get one for no reason. Some TV shows that move the camera around a lot will give me a headache. I’m constantly tired because I can’t sleep more than 2-3 hours in a row and none of those hours are deep sleep until early in the morning, which is why I need medications to wake me up. (I have had several sleep studies done over the years).
I worry about going to most places because I don’t know if I’ll have to stand for more than a minute or two if I’ll have to walk too far, or what kind of seating they’ll have. Hard surfaces hurt my back and I need to be able to sit on my legs (my knees now cause me pain because I have to sit on them all the time). I wear slip-on shoes or sandals all year long (even during snowy winters) because I have to be able to slip my shoes off easily to sit on my feet. I worry about getting overheated, plus the constant excessive sweating is extremely embarrassing. I worry if they’ll have smells or lights that will trigger migraines. I worry if I’ll be able to have something to drink so I can take my medications. It’s a constant worry. I can’t even go grocery shopping by myself anymore because I can’t push the cart after it gets heavy. I can’t load the items on to the checkout stand and back into the cart or the car and then into the house. My son always has to come with me. He’s a great kid though. He helps me so much but that’s just another thing that causes severe depression…having to rely on him for so much.
I am so depressed all the time. Most days it takes every ounce of will power just to take a shower. Going to work is a huge struggle and getting worse. Housework is given up on most days because I’m either in too much pain or just have absolutely no energy. At least once a month I don’t even get out of bed except to use the restroom and get something to eat. I spend a minimum of 12 hours in bed most days that I don’t have my son. I rarely spend more than 30 minutes a day not laying down or sitting.
My house is always a mess because I can’t keep up with all the housework. Often my laundry doesn’t even get put away. All this and not being able to go out is teaching my son bad habits that constantly worry me. I feel like a bad parent. He says he understands why I can’t do things with him and why I need his help but he shouldn’t have to understand.
I am BEGGING you to help me. I’m sure you have received thousands of entries but I truly can not continue living like this. I will continue to fight for as long as I can. I will continue to try to find a new doctor to help me but I’m running out of doctors. It’s difficult to even call them, even more difficult to travel long distances to see them but I can’t afford to travel to them either. I wholely believe there is an answer for me out there. I just can’t find the person who has it. I need to get at least some of my life back. I can’t even call what I have right now a life. I’m a very private person. I talk about my back problems but I don’t like to talk about my depression and other health problems. I don’t like having my picture taken, I make exceptions for my son and other rare occasions, and I hate being recorded. The idea of being on a reality TV show terrifies me but I thought about it and if there’s a possibility that you’ll be able to help me then I am very willing to give up my privacy to do it. I would do almost anything right now to get help. It’s been 20 years of suffering and 10 years of complete hell.
Break me free from this hell!
It has taken me days to write this all because I had to keep taking breaks and forgetting what I was going to say.