Back pain

Where as I can touch the touch the floor with just more than my finger tips without bending my knees and can bend backwards to about 60 degrees or more depending on the state of my back, which is hypermobility. I have also have several shoulder subluxations, including two spontaneous where the pain was so bad the choice was not breathing and the pain was bearable or breathing and the pain was well "spinal tap 11". I also had a finger come out whilst eating frozen yogurt so perhaps there is a connection. I also met someone today as a pain workshop with Complex Regional Pain Syndrome comorbid with autism. Personally I also know that wheat and a couple of other triggers in sufficient quantities over about a week will cause me joint issues. So thanks for the link, it has made me wonder about EDS again.

Hm.. does feel bit of overload .. no sound some time ago and heading for darkened room! The list on the front of the link you said I thought ️️️but looking at the official diagnostic criteria on the website doesn't do the same. Will have to research some more. Food for thought. Thank you for taking the time to explain. I will put together my own list form what you have said and shown me. 

I really hope it is not too overloading, I get massive overload all the time especially too much information overload and need to go to a darkened room with no sounds! I hope that has not happened and your bewildered is not overloaded. I found it all pretty shocking to find but it has made sense of most things for me now. I especially was pleased to find out about POTTS because that explained my fatigue going up hills. I really hope all this has clarified and has not made everything more distressing or complex. I find thinking about my own health really overloading and stressful as so much going on there, but now I know what most of it is I do feel a lot of relief!!! Hope you will or do too soon.

I followed your link ( thank you) and I read the list of symptoms and am feeling a bit shocked and bewildered because I do have a lot of the list .. things I would never have thought went together. have a diagnosis of  dyspraxia and cfs/fibro what you are saying I am like too. I must read my dyspraxia diagnosis again because the Dr  did mention some of this but I can't remember now. I'll have read it all again tomorrow, it's a bit hard to take in. Also I don't know what it all means. I'm just getting used to the ND side of things which fitted together like quilt on top of all the healthssues and now with that list it seems quite a few of my health issues fit together too. My colleague just used to say I was greedy! Bit mind blowing. In the light of this will have to read the whole thread again to see what's said about asd/ edhs. Thank you very much. 

Yeah lots of overlaps I found out too. My GP thought fibromyalgia or chronic fatigue but that was not right for me, but similar symptoms. I have no sense of where my body is in space either I should have said that, very awkward gait. I think it probably would be diagnosed as dyspraxia but the doctor said it is caused by hypermobility as this makes you unaware of where your body is and unaware of your body in general.

Thank you for describing that all to me. It's very interesting because it's not something I have read much about. Quite a bit of what you said I get too but the other parts I don't. There seems to be overlap with all sorts of things and conditions. I have been looking at low muscle tone in dyspraxia. 

PS I am not bendy, as in I cannot touch the floor with my hands without bending my knees, etc. But if I stand up and look at my legs instead of being straight they bend right back like bananas. I can sort of bend my knees way past where they're meant to be. Not so with arm joints however. Mainly knees and fingers I've noticed.

Yep. I've got hypermobile fingers so I they move around really easily and they bend back a long way. I have quite stretchy skin too. Sometimes my joints sort of lock, or click partially out, but never dislocate and my joints don't really feel that bad. My brother's hips and fingers jump right out as he has it too. Then I've got a lot of pain all over much of the time especially in my back and neck. Some of this is apparently the stretchy tissues not managing to hold everything together so everything sort of slumps because all the tissues are lax. Then I've got generalised pain intermittently, this is caused by histamine problems caused by certain foods, due to 'mast cell' issues which is part of hypermobility. Then I also get really weak going up hills and up stairs and my legs really hurt. I have poor circulation cold hands, very puffy feet if too hot (reynaud's syndrome). This is caused by POTTS another condition caused by hypermobility. I get back ache, neck ache, tingling in arms and wrists like pins and needles, headaches, nausea. I get really really exhausted and lethargic on and off. I got a book about it but all the information I found helpful is on https://www.edhs.info/symptoms

I have asthma, allergies, gut problems, IBS, and things like this too.

Will you describe your condition to me please? Because of this thread I have been looking up about this online. But though quite a lot of it seems to fit the being bendy bit definitely does not. I have the pain, weak muscles, can't stand for long, lean on things, rounded shoulders easily tired etc this does fit with all three Dcd, adhd and asd but I don't think it would be EDSH . So I am curious what it's like for you. Thanks 

My GP sent me to see a rheumatologist and he diagnosed me with joint hypermobility symdrome which he explained was the same thing as EDS hypermobile type but rheumatology diagnosis joint hypermobility and geneticists diagnose EDS so my diagnosis is JHS (joint hypermobility) but that is the same as EDSH according to him.

Hi

That is very interesting thank you, how did you go about getting an EDS diagnosis?

Thanks

Andrew

Hello Andrew,

I also have Ehlers Danlos Syndrome Hypermobile Type or Joint Hypermobility Syndrome. I heard it is common as a co-morbidity to autism. I am autistic too and I get pain all over the place, but especially in back and neck.

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. 

Hi

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.

Thanks

Andrew

Enjoy your outside time whilst you can. You can tell me about your back if you want but it's ok. What do you think about it being connected to us or do you think it's just wear and tear due to our age or are we more prone to it. I don't know. We just had an overhead mini flash and bang of thunder and lightning but back to blue sky now. 

Hi missy sorry about the lack of reply,I did intend writing in more depth about my back,but you know me it would have to be a thousand word ramble,for that I need focus and energy.Ok I have chronic back pain,agree with that maybe I meant those that are in so much non stop pain that it never ever stops hurting, I have good days and bad. Yes the symptoms vary enormously,I already had sciatica in the left hip/ leg,and yes I know it is all back connected but the lower spine pain came later.so two issues. 

I will elaborate more soon but the sun is out so going to mess about outside till it's gone,yesterday was wet and miserable.

big hugs super lady ()

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. 

Lonewarrior.. long term back pain = chronic it means it won't go away and isn't short term.. so sounds like you do have chronic back pain just like me! I just found a link which explains it better. Well probably not just like me but we know it's painful and does funny things and changes depending on what it feels like doing! Is it going to be painful back, or pain down the leg and which side, or aching hips or tingling toes , or burning spine and shoulders.. mm it's got such a lot to choose from! And all that digging on one day won't help! Tricky getting the balance right between keeping moving and resting! And the pain management course I went on at the hospital said exactly that.. with pain you end up just upping the dose to keep at the same level of pain management.. so they encourage other ways to try to help, stretches, what they call pacing, meditation, tens machine. It's yet another area I find difficult to manage but if you are able to people find it helpful. Worth looking into. 

https://www.britishpainsociety.org/static/uploads/resources/files/book_pmp2013_participant.pdf 

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