Back pain

Hi

i have some form of instability in my back that the doctors can't get to the bottom of, but the net result is back pain that painkillers don't deal with and it disturbs my sleep every single night. Having just read a couple of other posts and wondering for a while now about the possibility of some form of co-morbidity between autism and back issues, I thought I would just do a quick straw poll to find out how wide spread the issue is.

Thanks 

Andrew

  • Have you tried Quetiepine one tablet through the night it helps me to get a good night's sleep and reduce ocd levels and anxiety.

    Plus sertraline says my doctor one table a day keeps the doctor away. Just joking, it helps reduce OCD, anxiety and one main thing is depression. It can make yourselves drowsy depending on the dose your doctor prescribed you. (I'm on 100mg a day prescribed by my doctor and l, and I had to reduce to 50mg as was getting quite drowsy and cant do much. 

    Hope this helps.

    All the best,

    Arthur.

  • Sounds very familiar to the rest of the group. It is interesting that some of my muscles don't fire automatically and I have to tell them to, such as my glutes.

  • I know the feeling only too well Jessica, hence why I sit on one of these at my desk: https://www.amazon.co.uk/Everlasting-Comfort-Orthopedic-Sciatica-Tailbone/dp/B01EBDV9BU/ref=sr_1_fkmr0_1?keywords=ChiroDoc+Memory+Foam+Coccyx+Seat+Cushion&qid=1564569404&s=gateway&sr=8-1-fkmr0

    For sleeping I have a memory foam mattress and an adjustable shredded memory foam pillow thanks.

  • I have joint pain bit back especially. I'm hyper mobile so I think it's that though 

  • I tend to stoop "Mr Burns style" and I'm sure I've read that autistic people can have this gait. I don't suffer with back pain, but maybe something to consider?

  • I have coccyx pain in my back and I sit in front of a computer all day long (I'm a software engineer). My lower back and my ass hurt every day, I used to use this pillow on my chair but lately it's just not helping anymore. I have to stand up a lot throughout the day just to relieve the pain. So I bought a new seat cushion called ChiroDoc Memory Foam Coccyx Seat Cushion on Amazon with hopes that it could relieve my lower back pain. 

    This is the third and the best seat cushion I have ever bought on Amazon (first and second were too hard). What's so great about it is that while it's super soft there's still this certain firmness about it so it has not yet gone flat. Memory foam maybe. When I first sit on it I feel the quality and the stiffness which I mentioned which to me is great because the material isn't degrading but give it 1-3 mins and the material warms up and forms to you like a glove and you automatically feel the support and comfort. Now I take this lil guy with me literally everywhere I go. 

    It's been about 3 weeks since I have used this product and it doesn't feel cheap or will flatten anytime soon. When you sit down on it it compresses but as soon as you get back up it stiffens back up. Let's see how long it will last but so far I love this thing religiously and my colleagues in the office who have used it swear by it as well. 

    Amazingly, it's not that expensive. Mine cost about $35. Is it worth it? In my opinion, absolutely: thousands of dollars that would have gone to the chiropractor to straighten and fix my spine and posture was thousands of dollars saved thanks to this bad boy.

    It helps a lot (especially in the car or at work and if when we go into a restaurant or somewhere with hard seats (hate those darn wooden chairs lol). 

    Verdict: Get your hands on this bad boy, it will save your back and entire body a world of pain and in the long-run, your wallet. I will update you guys within the next month or so but so far I'm loving it every darn second (so is my butt).

  • I gave the highlighted document to my Gp for her to see but and she will read it in more depth to see what she thinks. Her initial reaction was that all the different things I mentioned are quite common and didn’t necessarily think it applied to me in terms of eds. so more confused than ever now. I will finish reading the link sent when I have better concentration at the weekend. My social care assessment starts next week. 

  • I am having social care assessment at the moment and I do not yet know if my hypermobility diagnosis will help but I think having a diagnosis of something will be helpful but it doesn't really matter what the diagnosis is because it is really about symptoms and how they affect what you can and cannot do for yourself. So really it is not too important what the diagnosis is as far as I have experienced but I will know more in a few months when I have had my assessment and get some help.

  • This thread just gets more and more interesting thank you. So here is something intriguing. I was at a pain workshop yesterday called "the language of pain" project and out of six participants, 3 had aspergers, 2 had hypermobility, 1 had confirmed EDS, 1 had rheumatoid arthritis and lupus, and one had Complex Regional Pain Syndrome. What is significant is that 2 of the Aspergians also had hypermobility and the other Aspergian has Complex Regional Pain Syndrome. Plus having looked at the EDS symptom list I have tick a number of the boxes. So all very very interesting thanks. The question then I suppose becomes, with those that have been diagnosed as having EDS, did it bring anything positive in terms of care?

  • Thanks Quaker. I think I was just looking for reassurance to go ahead and take the information to my Gp when I see her today.   I’m so wary of having yet another thing wrong with me but if it it this it does add so many pieces together. Thanks very much

  • Misfit, I have a diagnosis of joint hypermobility syndrome but the rheumatologist who diagnosed this said Ehlers Danlos Hypermobile type is the same thing (I think I already said this, sorry for repeating myself). I found it helpful to get this diagnosis because it clarified lots of things for me and also made me feel like I can tell people what is wrong with me instead of just saying it is pain or not being able to describe it well which I struggle to do anyway. Also there are other things associated with EDS/JHS and they are things like IBS and reynauds syndrome and POTS and also mast cell issues. I have a diagnosis of IBS and reynauds and I also think I have POTS and mast cell issues and want to have these diagnosed or otherwise dismissed because if I know what is wrong with me I can turn to alternative medicine to get some relief usually, like I have with pyroluria which is another thing I have and which has gone away with supplements.

  • Hello Zantana.. I have printed off the list of symptoms and sub symptoms and highlighted all the ones which I have. But Im just wondering how helpful it is to get a diagnosis for eds? or is it another  good to know as part of the jigsaw puzzle of or lives and conditions? . Plus I really can't get my head round this being a possibility because Im very inflexible and not at all bendy but lots of other things fit... curiously Misfit thanks 

  • Hi Andrew

    I don't know if it's connected to my Asperger's but I did used to have bad posture, I'd roll my shoulders forward in a slouching way and had bad posture because of this. A couple of years ago I made a conscious effort to improve my posture and it has largely worked, I now stand and sit taller, straighter back and I feel better for it. I don't get aching shoulders, it's also improved my breathing, which wasn't bad but better posture encourages better breathing.

    As Robert also said a good mattress is key, the firmer the better for your back, even if you prefer to sleep on a soft mattress.

  • Hi Andrew, this is definitely the case for me. I've struggled with poor posture and joint pain for about 9 years. It started with wrist pain whilst i was studying and the GP said it was RSI from too much typing. Was advised to rest and take painkillers, but this made no difference. Then my ankles started playing up and now my lower back is the same. I have weakness, pain, stinging/burning, and clicking in and out of place. I tried two physios years ago, one said i needed to exercise more to build up my muscles and the other said my joints were just too far apart. Wasn't sure what to make of that at the time. After a lot of research i recently read about Hypermobility. I'd previously discounted this as a possibility because i'm not typically bendy. For example, i can't touch my toes. However, as with some of the other people in this thread, my knees bend the wrong way etc. I have terrible body awareness and am rather clumsy and also struggle with IBS. So that is all starting to make sense. Sitting for too long makes my back worse, so i try to walk around as much as i can and lie on the floor to re-align. I've tried all kinds of things (cushions, supports, heat/cold etc) but not a lot helps. Currently, i'm trying to do exercises to improve my proprioception, balance etc. I find swimming helps with flare-ups, as the water can take your weight but it still gets you moving. Hope some of that is useful to you. And thanks for raising this issue!

  • I see a private physio each week but she can only keep me moving. I need a doctor to get a proper diagnosis and care plan, but the concept of doctors diagnosing anything seems to have gone out of the window.

  • Got my back pain doing carework. Overlap with autism is believing other people when they said, everyone has backpain stop whinging get on with it. (Obedience and rule-following behaviour.) What you need's a physiotherpist, doctors are for pills and potions. Self-refer, ask GP, or go private.

  • I didn't think I had enough joints hypermobile either but clearly I did. They didn't do that test on me either time, just moved my fingers and knees about a bit and said wow these are hypermobile, 'do you know what that means?' (patronising voice tone)... I haven't tried melatonin but do feel a lot better if I get more sun, I sleep better and feel more relaxed. I do the GAPS diet and part of it is getting more sun.

  • Yes, I just looked at the standard tests and I fail to meet the criteria as I don't have enough mobile joints. Yet the joints I do have that are hyoermobike greatly exceed the normal range of motion. Typical medics, you can't be something unless it takes up enough of your body, completely disregarding how bad individual parts are.

    As an aside, has anyone tried melatonin therapy, either through using a SAD light or spending lots of time outside or by using supplements?

    Thanks

    Andrew

  • Oh that's good I'm glad someone else can use the link too, it helped me. Your subluxations sound very horrible, I know my brother has extreme pain with his and the dislocations. I think the thing with the joint hypermobility syndrome is not all the joints are bendy but some are really unusually bendy and this is usually how they diagnose it, I've been diagnosed twice and they were always really sure because it's apparently really obvious to a rheumatologist.