Anyone else get extreme back pain?? - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

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Anyone else get extreme back pain??


I am new here, was told i have hyper mobility syndrome a few months ago. Its taken years to get a real diagnois of anything. First they thought i had just bruised my back, then i might have arthritis of the spine, then i just had a pulled muscle then maybe a slipped disc. I have had lots of blood tests and an mri scan which all came back clear.

The problem is my back. When it flares up i cant walk, i cant even sit on the toilet myself. I feel i am being crushed and its agony :( It feels like pressure on my lower back and my bum cheeks and i get like a stabbing pain that goes down my bum cheek and right leg. My doctor mentioned sciatica but the hospital said no. They were all clueless until one doctor asked me if i could put both hands on the floor and i did it then she asked me to do a few more things then said bingo you are hyper mobile and have hyper mobility syndrome. The thing is they wont give me anything for the pain and when i ask all i get is oh so its painful just take painkillers which don't work at all. I get physio once every few months and its just a case of lying on the bed lifting my legs then standing on one leg at a time. I will admit most of the time i don't do any of the exercises at home because i am in pain. I just keep getting told its just my muscles being over worked and the exercises will help.

Does anyone else have this same type of back pain? I feel like i am losing my mind and cant take this pain much longer.

8 Replies

I am assuming that they have checked for a slipped disc and that is negative?

Yes all of our muscles have to work super hard to hold our joints in place, but the pain from them is easy to pin down to specific muscles in spasm, and is relieved by things like massage, which doesn't sound like your pain.

In which case it does sound like either a torn muscle or (more likely) a torn ligament, which won't show up on mri, and which will inflame all the tissue around it, which puts pressure on the nerves going through that area, which mimics sciatica. I get it similar but in my hip/leg joint lower down. It is very painful - bad enough to stop you standing or sleeping!

Once torn, it will tear again and again so if this is what you have, you would need to tackle it in one big go. (note the IF - it is very disappointing that you don't have a diagnosis for this pain).

To treat it my dr gives me diazepan to relax the muscles (which go into spasm around the area), gabapentin to treat the nerve pain, amitriptyline to help me sleep through the pain, naproxen or ibuprofen (if you can take it) to reduce swelling around the injured area, and this is on top of my normal slow release tramadol with paracetamol for my general pain. Then I have to lie down, on my back or side, immobile as much as possible, for a week, and after that, stay immobile for long periods and as soon as I feel any pain or twinge in the area, lie down again. This bit is necessary as it just won't heal if I keep getting up and trying to do normal things.

This has happened to me a few times now. I was down from Christmas until the middle of Feb with it - - I had a little tear (felt it go) but I carried on because of the holidays, so got another and another and then a big one. Torn ligaments take about 8 weeks to heal fully, and during that healing time, are at risk of tearing again. The house went to ruin and the family mostly ate take aways!

Once you have healed fully, then see a physio to work on strengthening your core, as this will help prevent it happening again.

Hi Lynxx

If you have not tried already use a heat pad they work wonders for me in this area I use in bed as well or electric blanket. Try using aloe vera to try and remove some inflammation or volterol or similar. Massage is good too this helps stimulate the tissue in the area, and I know it sounds like madness doing exercise but only do the most gentle of stretches in this area when the area is nice and warm and you've given it a bit of a massage, not moving really does nothing for me it makes things a whole lot worse in the long run. I also have epsom salt baths. I was given a series of gentle exercises by a fellow EDS sufferer who's a chiropractor, this is when I was chronic when I used to see her for soft tissue manipulation which was great but short lived and expensive though still carried on with the simple daily stretch/exercises which helped me recover.

Really feel your pain and hope you can start to feel some improvement very soon.

Take care, Gillian

Yes, for years and I have arthritic changes now and osteopenia. I use an infrared pad, rest when needed and try to pace. The best thing you can do for your back long term is physio to strengthen the glutes and thighs, they are your power houses. You have to work on them so that your back muscles don't work so hard.

Yes I get it. Its actually an unstable pelvis that causes my back and leg pain. So no standing on one leg will make it worse. Have you tried a TENS machine? I find that helps with sharp and tingling nerve pain. Ibuprophen when over done things and ice back. Sacroiliac joint dysfunction belt. Pace activities. Try water based walking for 10 mins or less to start with and build up. Stop before pain worsens. Takes a while to get the hang of pacing. You have to listen to your body.

With hypermobility yoy get responsive pain. that means you do stuff one day and you pay for it the next. you need to learn what your limits are. Otherwise you will do things one day and then not be able to walk the next daya nd be in severe pain, trust me as a result. The pain is intense and can make you feel like your bones are crumbling with each move but you will learn. I wear Butrans patches all the time. I'm on 20 dose at the moment but they start at 5 so you can see how you get on. I couldn't do without them, but I still have sever pain and even lying in bed is agony a lot of the time. I could simply use a wheelchair but I don;lt want to, as I have one life and want to be as independent as possible. I also take liquid morphine as well as paracetamol and ibuprofen. I also take CBD+ oil which I get from Holland and Barret. I have tried loads of other pain killers but the side effects are a problem and as I have EDS and gastroparesis, as well as Fibromyalgia, I have to cope with other stuff too. I have found that physio folk aren't the most helpful and have made my joints worse really. it is a matter of finding a balance. Many medical people have told me that you can't die from pain, and I guess you can't so remembver that when the pain is bad. I repeat over and over again "This moment will pass, this moment will pass", until the pain eases. Good luck.

Thank you all for your helpful comments and suggestions i will be trying them all :) I wasn't really told much about what they have diagnosed me with , it was just a oh you have this so you now don't need to see us anymore goodbye. I had to come home and google it to find out what it actually is. I was told it shouldn't be too painful so they wouldn't give me anything for the pain. Normal painkillers don't work so will go see my doctor to see if he will give me something for when its really bad. When i go to hospital for physio i just get told that my pain isn't as bad as i am saying and that i just need to get on with it. Often come out feeling like is it all in my head. Going to try and keep up with the small exercises and have a look at cbd oil.

leakeadea in reply to Lynxx

Sorry I had to comment on your reply above. Being told that your pain "is not as bad as you think it is", is completely unacceptable, I am furious that this was said to you!!

I got told for many years that my pain was all in my head and I literally cried with relief when I was finally diagnosed by Professor Rodney Grahame in 2000. I am now looked after by Dr Alan Hakim who was on the team of Prof Grahame at UCLH, back when I was first diagnosed. Dr Hakim now practices privately however he will support a patient through their NHS care and treatment, once they are under his care privately.

I'm assuming you're in the uk and if so and you can afford it, make an appointment to see Dr Hakim at the St John's and St Elizabeth Hospital, London. The initial consultation costs £300, maybe £350 I forget now but once you are under his care he will oversee your treatment locally and I guarantee that he will be furious about anyone in the medical profession telling you "your pain isn't as bad as you think it is"!!

Dr Hakim is wonderful and dedicated to helping those with eds and hms, I truly believe that it is a really worthwhile investment going to see him privately, as he will support you through anything that your hypermobility may put you through in the future. If you're unable to travel to see him in person, then I'm sure he will be happy to do a telephone consultation instead.

I received appalling treatment as an in patient following an operation last November. I was accused of faking my post op pain because the ward staff made the mistake of thinking that my daily pain relief meds that are prescribed by my GP, were what I was being given for my post operation pain. Following my operation, I experienced the most acute pain I have ever been through in my life and because I wasn't given any proper pain relief post operation, I ended up in what they call a "pain crisis". I was literally catatonic with pain, my sister actually thought I'd had a stroke because I couldn't even speak, I was in such agony!!

Dr Hakim recently wrote a letter for me to give to the hospital who put me thru such terrible trauma following my operation, explaining to them how much more acutely I will experience pain due to my EDS. I will also present this letter to any hospital in the future, prior to agreeing to an operation, as it clearly explains to them the extra support and pain management and physical support I will need, following an operation due to having EDS.

In future, if anyone says to you again that "your pain isn't as bad as you think it is", ask them how long they have had a "super power", that allows them to experience their patients pain and therefore know exactly what your pain feels like!! That might shut them up!! 😉

Claire 😀

I can relate I'm so sorry you're in such pain.

I have eds and yes I can have excruciating lower back pain going thru my buttock and down towards one leg. I can't even stand upright when it's bad and lying down used to be the only option. After a recent operation I was prescribed lidocaine patches and I wish I knew about them years ago. I can apply one to my lower abdomen and very soon I get pain relief. I also rub ibuprofen gel 10% into my back, buttock etc and use hot and cold pads.

Eds and hypermobility responds better to topical pain relief ie on the skin, rather than tablet type pain meds. Having said that I take morphine slow release tablets twice a day, amitriptyline at night and I also have liquid Morphine for top up pain relief but that is my absolute last resort.

I have pain everywhere in every joint in my body hence the morphine but if you can get relief from ibuprofen gel and lidocaine patches, take that route first, as morphine is not recommended for those with eds as it slows the gut so much and our guts are already very sluggish.

It is unacceptable that you are being left in so much pain, ask to see the pain team at your local hospital too.

I hope this helps, Claire

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