Published on 12, July, 2020
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
Hi, It could be Earlos Danlos Syndrome, as I have back pain too. It's a over flexible soft tissues muscle condition which effects the whole body. People don't often see what's the problem, link here https://www.ehlers-danlos.org/
Often local physios don't know about this condition, so often the exercises don't help, unless its private physio.
Most Gp's have not even heard of it before.
Now it's interesting you should mention EDS, as I do know about it having dated someone with it. Interesting enough she had a brother on the spectrum. I do have some characteristics, such as being able to touch the tip of my nose with my tongue, but despite being hypermobile I don't have enough extra mobility to make EDS likely but I have always wondered about it.
I was just trying to contribute possible connection and cause.. and potential solution to those able into the stream of ideas. Plus when painkillers are either ineffective or untolerated have to look for other alternatives. But yes I do know what you mean about pain levels increasing when trying to target muscles. Plus over the years my pain, area of pain etc changes depending on what and where the pressure on the nerve is and this shifts about. If I do too much walking it irritates it I suppose that's why I have started the thread about exercise. Like you I have various pillows to support in bed but move about a lot as the discomfort changes. Also need one for my knee. Also the type of pain changes. Recently it has been the burning kind. Yes I'm glad you posted this topic because I never would have considered a connection with others on the forum in this way!
What that doesn't unfortunately take into account, that in my case at least, as soon as I start trying to target the muscles in the area where they appear to be weak my pain levels go through the roof. It is like the back has stabilised itself and any sort of forcing it to act "normally" causes a reaction. What I do know is that when I bend to my right my back acts normally, but when I bend to my left, by back seems to shift sideways at L2/3 but that appears to be because the lumbar spine is twisting about the vertical axis. That said, having read your post and looked at a specific poster at my physio's this morning I do wonder if I have damage to me Lumbar multifidus in one particular area, which could go a long way to explaining the abnormal movement and in turn pain. So thanks!
http://www.skillsforaction.com/core-strength-stability-children
I think this offers one explanation of why as adults we have back issues. But I'm just looking into it. Pilates, Alexander Technique and other core muscle toning gives more support to the spine and in turn supports hips, shoulders and neck. All part of the whole picture.
I've been looking at the NHS Choices website about EDS and I don't seem to fit any of types. That said I can see that there would be a link and also a link between autism and back issues due to the brain and spinal cord forming very early during pregnancy.
Its also interesting that most report lumbar issues, however, whilst there might be a link the problem is lumbar use es are the most prevalent back issues in the general population. However, the difference is that the painkillers have little or no effect and the pain events are often abnormal and closer to dislocations, which is something that happens with the hyper mobility type of EDS.
interesring, question is how can we use it as a community to help us get better diagnosis of our back issues and better pain relief.
I'm not too flexible, but you don't need to be too hypermobile to have EDS. I certainly can't touch my tongue on my nose! there is a link with gastro issues too such as IBS.