Back pain when sleeping or laying in bed or while sitting around being lazy

Posted , 11 users are following.

I see a lot of people with symptoms like me and they don't seem to figure out what the issue is so I just wanted to share my experience. I had back pain for years while sleeping at night or sitting around the house on the weekends. At first it was just side pain that would cause either my left leg or right leg kind of hurt and cause me to limp a little in the mornings and then it would go away as the day progressed. As time went on I started to have more back pain in the mornings but nothing too serious for a few years but enough pain to notice that I had some type of back issues but it would go away after I got up and went to work. Occasionally it was bad enough I would go to the doctor or miss work and the doctors would blow me off with a bunch of pills and act like nothing serious was wrong. This went on for years and progressively got really bad but I was always able to deal with it cause I just got use to the pain and I avoided doing anything too difficult out of fear I would hurt myself. I thought this was all part of getting older and that it was normal. I would come home from work tired but no pain and I would get in my recliner or lay on the couch and within a few hours I would start to feel back pain. When I would go to bed I would wake up in the middle of the night with back pain usually about 4 hours after I went to sleep. Remember it wasn't horrible in the beginning but I knew something wasn't right. Just so everyone understands I am only 37 years old now so this all started when I was 18 yrs old but as I said it wasn't very bad in the beginning. I had MRI's done along with x-rays and I even went to chiropractors with no luck and everyone told me there was nothing wrong. I started to think I was crazy and the doctors made me feel like I was crazy too because they would do blood work and whatever else they could and it always came back as normal. I felt like everyone thought I was making this up. Out of discouragement I didn't go to the doctors anymore after years of being turned down because everything always turned out to be that I was crazy and this was all in my head. My wife would tell me to go to the doctor all the time but it just seem like a waste of time. About 3 years ago I started going back to the doctors because it was starting to interfere with my daily life and the doctors did the same tests they always did like blood work and MRIs and they would tell me that I had signs of degenerative disc desease and some pinched nerves and blah blah blah but that it was normal for a man my age. At this point in my life I can't sleep anymore after 3-4 hrs a night because the pain is so bad that I feel like it's hard to breath and it's hard to get out of bed and I would take hot baths at 1-2am in the morning just to ease the pain. I couldnt even bend over to put my socks and shoes on let alone tie my shoes in the morning but according to the doctors this is normal for a man my age. I was getting cortisone shots in my knees and my back is as stiff as a tree and my hips hurt and on and on. Anyways a lot of the discussions I read where people can't figure out what is wrong and why their back hurts sounds like my story. I would suggest everyone that can't get any results from family doctors and walk in clinics go see a rheumatologist and have them check for auto immune deseases. After kicking and screaming the doctors sent me to a rhuemotologist and it turned out I had an auto immune desease called ankylosing spondylitis and I am 100% pain free today. I understand not everyone will have my condition but people that are not getting results might get some hope seeing a rheumatologist.

1 like, 11 replies

11 Replies

  • Posted

    Some other symptoms I had later on where rib pain, sternum pain that made me think I was having a heart attack but luckily it wasn't. My shoulders and neck would ache and my knee's felt blown out. This all built up over the course of 20 years but if anyone has questions about my symptoms and theirs just reply and I can try to help.

  • Posted

    What are your medical treatments and how do they help?...
    • Posted

      I started on Humira it worked really well then I had some side effects and had to switch to enbrel. They are both weekly injection that I give myself! Takes a while to get use to the needles but basically I went from feeling 100yrs old to feeling 20yrs old in just a few weeks! The medicine can take a couple months to work on some people and then your joints have to heal so it can take a while but the medicine basically knocks your immune system down so that it doesn't keep producing inflammation and attacking your joints. The medicine is intimidating so most need to weigh the options to see if it is worth the risk. I had finally gotten to the point I couldn't live a normal life.

  • Posted

    That's very interesting thanks for telling your story.  It sounds very similiar to mine but the difference is I have even been turned down for an x-ray on the NHS.  I did pay for a private one which showed one of my discs had been worn away and another was being as well.  Doctors just say it is my age too! 

    I have an autoimmune disease too - one which causes abcesses and I wonder now if the two are connected.  Going to google ankylosing spondylitis.  Thanks again.  I am glad you found a solution and your pain is gone.  x

     

  • Posted

    Hi. I don't have symptoms like yours. Though in April/may this year I started to get pains and little niggles in my back. I woke up one morning in mid May in a ton of pain but worst bit was when I went to the toilet and seen my upper body as it was significantly shifted to the right well off the normal horizontal line so walk leaned to the right. Anyway went to the doctor did X-ray blood tests and then turn round and tell me nothing wrong all is normal. Ok really well I don't see anyone else walking around like this!! So thinking nothing major is wrong I carried on as normal as possible then went on my holiday which was already booked. Second day in it was like bang at the bottom of my back,felt like someone shot me on the left side of my ass and lower back and at same time hit with a hammer in the middle of my spine. Once home I was sent for an MRI scan asap. Turns out I've slipped a disc at the very bottom of my back which is causing sciatica and scoliosis as well as the pain which was excruciating for over four months,and also been told part of my disc might have blew out also. Not bad for being perfectly normal. Six months on I'm still waiting to get even seen for surgery never mind a date for it. My spine is like in 3 different parts/shapes because it is way too the right at the bottom angles left in the middle then straight from there to my neck. Pain is terrible and my full spine and back shoulders etc are way out of sync and the strain on my body is unbelievable. Thought I'd share this as if you have back pain which you know isn't right or normal or excruciating pain never let a doctor fob you off even if they say it's normal. My experience it made things 50x worse as if I had been properly checked out at the beginning I would have rested and this situation good chance would never have happened. Doctors specialists etc aren't infallible or always right and never accept an X-ray from a doctor to diagnose your back etc as it's as much use as paper window wipers. It has to be an MRI scan. X-rays for this isn't worth a damn.

  • Posted

    Thanks so much for all this info. I have been dealing with the same issues on and off for years. No one seems to be able to give me answers but at this point I'm getting desperate. Only sleeping a couple hours a night is really affecting life. How was this diagnosed? Is it something that came up in blood work? I was at a rheumatologist awhile back and he did blood work. Nothing came up and he never mentioned this. Just curious - thanks again

    Jenn

    • Posted

      I think pain is coming from sacroiliac joint maybe you encountered an inflamation in your childhood or a kind of infection maybe you are a candidate of having an autoimmune disease .You can go to a physical therapist maybe some tests provacate your pain and you can discover source ...
    • Posted

      I had a fall on my back 3 years ago,  to this day I have had terrible pain in my sacroiliac joint only when I am lying down or sitting down for a period of time. The pain resonates up into my lower back when lying down,  I to only sleep for up to 4 hours a night, I have had steroid injections into the sacroiliac joint which does not really seem to help, I have taken antidepressants they do numb the pain but also numb my senses, I feel like I am not all there. I have tried to strengthen but back but find that it only gets worse the more strength training I do..... Any other ideas ? ? 
    • Posted

      Interesting that antidepressants helps with the pain.... I’ve been considering going to a psychiatrist for the depression the pain causes me but I don’t want to take any more medication. 
  • Posted

    It took 10 years to diagnose my AS correctly, it's was a dark time. I had very severe pain during the night as well.

    What saved me was my snoozle slide sheet and even if I'm a lot better on the biologic drugs etc I still use it along with a body pillow. I have fibro too, so that still messes with my sleep! 

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