Hello all, this is my first time posting here after coming across this site for years trying to figure out what is wrong with me.
32 year old male, 6'3" very long legs, half ashkenazi and white, and weighing 205 to 185lbs
chronic back pain since 2011, mainly lower back, hips, pelvis, shoulders, neck. Can not sit or stand for more than a few minutes at a time without pain. Comes and goes, more often the pain is present. IBS or IBD, mouth sores when sick. Bound to bed most days, i work from a computer while laying in bed most days. Random foot, knee and elbow pains. Waking very sore in legs, hard to put on socks most mornings. Hot showers help.
Diagnosed 6 months ago after having an MRI:
Intrinsic disc degeneration at L4-5 and L5-S1 with mild bilateral foraminal narrowing at each level. There is no central stenossi, exiting nerve root impingement of evidence of active facet arthritis.
Spina bifida occulta
Diagnosed with the following within the last 2 months, in order of time found:
Mild Scoliosis (cobb's angle around 15 degrees)
Proctocolitis (just had colonoscopy, waiting for results. Had sigmoidoscopy 2 weeks ago, found inflimation.)
LONG DETAIL OF THE LAST 4 YEARS.. very long i'm sorry.
All of this started in 2011. I am a photographer by profession (i carry 2 cameras on shoulders, ouch ouch ouch). I was doing wildlife photography and was carrying a heavy bag on one shoulder. I found a bird, and crouched and slowly moved closer for about 30 minutes while carrying the heavy bag. I finally tried to stand up straight from the crouch and i couldn't do it, the pain was too much. It took 10 minutes to be able to gain the strength to stand up straight. The pain was so bad, but i was in a rocky area and there was no way anyone could help me so i had to deal with the pain and slowly managed to get to my car. When i sat down the pain was incredible. I didn't have insurance so i just drove home with amazing lower back pain and rested for a few days.
Since that time, (july 2011) i went through the following months with on and off lower back pain, and i had to drive 12 hours for christmas to see my family and that is when i knew it was bad. Whenever i would get out of the car after sitting for around 1-2 hours, it took me about 1-5 minutes to straighten my back to the point i could actually walk. Walking relieved the pain a little bit. Laying down for over 30 minutes was the best though, along with hot showers.
2012 went by with much pain, at times i could not sit for more than 30 minutes. I went to a doctor, who was useless and told me "what do you want me to do about it?" So i said i guess give me pills.. didn't want to hear that. No insurance so i couldn't get x-ray or mri.
2013 and the pain was worse. I knew i had to do something, i couldn't sit for more than 5-10 minutes at times and wildlife photography had completely stopped at this time. I could only do my photography job which caused immense pain in shoulders and lower back.
2014 and obamacare gave me the opportunity to get health insurance ( was afraid pre-existing condition would screw me over) and i finally saw a back specialist. He said my leg muscles were weak and tight, had me do physical therapy for 2 months. No improvement happened, in fact the physical therapy found all sorts of new problems that they couldn't tell me about or help me with, mainly my shoulders, arms, neck hip and pelvis. The physical therapy was never ending and expensive, and i couldn't afford it so i stopped going once i got my MRI.
MRI showed "nothing" to the back specialist, and he said i might have sacroiliitis and prescribed a back brace along with muscle relaxer and anti inflamatory pills. The back brace and pills seemed to help actually, and for months i was able to sit much longer. I also started to sit on cushions, 2 cushions in my car let me sit for hours. Same for my computer chair, cushions seemed to really help. Sadly i couldn't afford the insurance and was canceled because i didn't pay the premium.
But after a few months it all came back again. Also a new pain of hip and groin pain started around this time. Mainly on the outside of my hips and groin area.
2015 and i have insurance again, finally getting some answers. I went to a new back specialist who dismissed the sacroiliitis and i said i might have anklosing spondolytis which he thought was not possible. He noticed my left leg was shorter than my right and gave me a heal insert which caused much pain in my right foot and pain in knee. I was about to lose it at this point. Luckily we had x-rays done and he tells me i have "facet syndrome and arthrtis" via email. He told me to practice standing straight by squeezing butt & stomach muscles and moving shoulder blades back. After practicing this, i noticed that i could barely turn my neck and couldn't lift my arms above my chest and informed him of this via email. He told me to get x-rays in my neck and upper back and that is when we found the mild scoliosis along with a weird bone protrusion near the clavicle bones. Finally i am getting an MRI on my spine and neck next week.
Also i was diagnosed with Irritable bowel syndrome and had a sigmoidoscopy which they found inflimation, diagnosed with "proctocolitis". 2 weeks after sigmoidoscopy i had a colonoscopy done, the inflamed area was a little more red. Waiting for results.
So here i am, 32 years old with arthritis, proctocolitis, severe lower and upper back pain. I am losing my mind over all of this, answers are finally coming but it's so difficult to do anything. I haven't been able to cook or do laundry for 2 months because standing still really hurts, i have to shuffle all the time and keep moving. Only thing i can do is lay in bed, on my left side, to relieve pain, or lay with a few pillows under my upper back and head and pillows under my knees. I haven't been able to do anything that i once loved to do, and i'm scared for my future. I am a freelance graphic designer and photographer and it's so difficult to deal with my clients because of the fatigue and pain.
I have a feeling i could have anklosing spondylitis. I have stomach problems since high school, along with eye problems since that time. I see floaters, very sensitive to light, constantly rubbing my eyes (although i have learned to stop doing this for the most part) and my eyes are bright red especially when tired, which is often.