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HELP! I don't know what I have. I feel extreme pain when getting up from a lying down position

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  • CarNicCalCCarNicCal Posts: 2
    edited 08/11/2015 - 8:45 PM
    I have finally found others with this complaint! My goodness, I was beginning to think I was alone. I'll share my experience for others to relate, as this thread is amazingly useful. It's been hard finding anything on this elsewhere on the internet. I am definitely worse AFTER lying down, and not while I'm lying down, despite what many other forums and sites suggest is more common.

    So. I'm 25 and find now that if I like flat on my back or stomach, getting up is horrendous. My pain occurs in the lower, concave curve of the spine - the bit that curves in towards your bellybutton. It's only - but not always - manageable by hoisting myself up with whatever is nearby and by really squeezing my core tight as I get up and move around, as if I'm trying to suck my stomach right in and tighten all the muscles around the spine. I feel like I'm having to hold the vertebrae together as if my very life depends on it, and it's often the only way I can manage things like stand up when it's gone.

    The pain is acute and unique. It literally takes my breath away and I have never had a pain do that before (always thought it was an empty cliché!). It takes a while to straighten out and some relief has previously been found by bending forward and hooking my fingers on the rim of the sink, and then using gravity to pull my butt away from my shoulders. Sorry, that's my best attempt to describe the movement I use to straight out. There are some loud clunks and for a while the pain is much better. I still don't know how safe that is so I don't recommend it.

    When I was younger, I went to a physio because my spine has quite an exaggerated curve and it caused some pain as a child. That sorted itself out eventually, and besides occasional sciatica, I have had a very normal back without issue other than the usual soreness or pulled bits after on days at work or drunken mishaps.
    This pain that literally stops me breathing or being able to stand up and hold weight is new to me for the past couple of years. The last episode seemed to make my legs feel a little weak, too, which is a little concerning...

    Other biological background in case it's relevant:
    positive for ANA and ENA antibodies (but immunologist don't think it's important or means much); extreme fatigue and hypersomnolence with disturbed sleep cycle (sleep clinic aren't taking that seriously); terrible dry red skin on upper arms and shoulder blade area that comes up after showers or hot days (not crusty or anything; just red and itchy), for which a locum doctor suggested moisturiser and daily antihistimines despite my never having an allergy diagnosis; quite loose joints which result in many sprained ankles a few dislocated arms over the years; very low resting heart rate despite not actually being fit, and apparently a low temperature (cheap thermometer could he wrong, though).

    There's big history of autoimmune issues in my family, particularly in mum, and also loose joints in my dad, so I'm not ruling out the chance of some autoimmune issue being the root cause rather than an idiopathic problem. It's therefore interesting to see Ehlers-danlos and Spondylitis mentioned here. I'm also pondering lupus and fibromyalgia from other searches on my symptoms. Or just a dodgy spine and some other coincidentally concurrent heath issues! Who knows?!

    Either way, I have no diagnosis of anything and therefore no treatment or management plans. I'm just trucking along in extreme discomfort and am failing enormously at keeping up with my adult life. Social, uni, and work obligations? Pfft. Barely manage them! I'm sure of you can relate to that.

    Anyway. That's me. Do let me know if you have any insight as to what this may be, or simply feel better for knowing you aren't alone. Good luck to you all. :)

    ***********************
    Nobody on the forum is medically qualified or permitted to give advice on your condition any responses will be based on members personal experiences only


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  • Sorry I wasn't clear with my comment. I don't expect medical advice, simply just people to relate to, and any insight I may take to a professional. I'd never take medical advice online, but would always welcome a point in the right direction from people with similar experiences, so I can take those concerns to a proper doctor for consideration.
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  • I am thankful I found this page!

    It just happened. It is excruciating pain on my lower back (or hips?) and it took me a while to stand up. This happens when I get off lying in bed even for a short while. The longer I lay in bed, the more excruciating. I am a diabetic so I was concerned my internal organs are acting up. Once I start moving about, the pain becomes manageable but it is still there. I am gravely concerned one morning I won't be able to get up at all. I have to read through the message thread and find out how to deal with this awful experience.

    Thank you.
  • SavageSavage United StatesPosts: 7,385
    Welcome to Spine-Health
    Please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • I am having a very similar problem. I am 29 years old have worked as an aide/LPN/Medical Technician on and off for 10+ years and began having lower back pain with sciatica approximately 6 years ago. The pain is tolerable most of the time and the one good thing about sciatica is that the attacks come and go pretty quickly. It may happen multiple times a day, but when I get it, it's a fast electrical-type sensation (at times strong enough to give me a dead-leg) but it's gone as quick as it came on. I'm also so used to it I've just learned to live with it I suppose.
    The scary part started 4-5 months ago. I lied on my stomach in bed to watch a movie one night and when I tried to get up I literally was stuck. My back would not bend at all and it was like I was paralyzed other than my arms, which I used to roll myself into my side and proceeded to very slowly-and painfully- sit up from that position. The whole time my back as hips felt like they were locked up. That's the only way I can explain it. And the PAIN. This happens almost every time I wake up now and the pain is almost unbearable. At its worst, my pain level has definitely been 8 or 9 on a scale of 0-10. Once I finally get up, it's like I have to stay hunched over and move very slowly. Even hours later, it is painful to stand or sit up totally straight. Also, the pain is not only in the lower back, it has move up to the lumbar/thoracic regions. I am pretty average build, definitely not overweight and am about 5'1". I have been hearing a lot about Ankylosing Spondylitis lately and wonder if that might be it??
    Any help would be greatly appreciated!!
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  • SavageSavage United StatesPosts: 7,385
    Welcome to Spine-Health
    Please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • GldnruleGGldnrule Posts: 1
    edited 10/22/2015 - 7:11 AM
    Hi I was reading about your pain,so identical to mine,to the point that I'm actually afraid one day I'm not going to be able to move and find my self alone.However my problem is from bulging disc ,spinal stenosis as well as disc disruption.
    I think personally the bulging disc is the culprit of my intense pain I have had upon standing ,real tough when you have multiple problems.hang in their and keep us posted
  • SavageSavage United StatesPosts: 7,385
    Welcome to Spine-Health
    Please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • SavageSavage United StatesPosts: 7,385
    Welcome to Spine-Health
    Please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • I have the pain that starts in my left buttock and it flares up on me all of the time . I have had 3 X-rays and 2 MRIs with normal results! I know that the shocking buttock pain is caused by my sciatica and that my sciatica is caused by SI joint dysfunction. I have been through years of physical therapy and even saw chiropractors. I started getting the intramuscular shots of cortisone/anti inflammatory in my buttocks and taking prescription anti inflammatories. After a few years, the shots stopped working so I started getting shots directly into my SI JOINTS which are wonderful but kind of expensive. I have found so much relief whith the SI JOINT shots but I am getting so frustrated bc I have vigorously searched for a cure with many different doctors and my symptoms go away but they always return! However, I highly recommend seeing your Dr during your next flare up (when it is difficult to walk or hurts to cough or sneeze). Ask your Dr if your symptoms are aligned with sciatica and if so ask about getting the intramuscular shot (just a simple shot in your buttocks) It is not a cure but they really ease the pain almost instantly (within hours) . Those shots were quick cheap and they worked really well for me for about 5 years. I had to get them every 4 months bc my pain always returned, but it was very helpful when you have to get back to your everyday life. Of course, do your research first and discuss all of the side effect details with your Dr!!
    Now, I am having new symptoms where my back hurts only at night while laying down. I have tried many different beds and different sleeping positions. The new back pain follows each side of my spine from lower back all the way up to my neck. I usually start my night out sleeping in bed then end up on the sofa sleeping sitting up. When I get up and move around the pain is gone. Also, if I lay on my stomach my lower back feels like it is about to snap in half in my lower back area so if anyone can relate to the new symptoms I have listed then please share. I would love to hear your story and whAt has helped you cope!
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