Living with hypermobility and sciatica

lolarosa90

Hi,

I was just looking for some advice really.

I am 22 and have joint hypermobility (or hyperextension) which causes sciatica in my lower back, legs and bum...

I have been to the doctor and the oestopath last year for the sciatica and it's back with avengence this year. I currently have a nerve trapped in my hip which is extremely uncomfortable. I always have to keep moving, which is hard with a desk job. I can't afford to go back to the oesto at the moment, it's £42 a go! :eek:

I was just wondering if anyone else experiences this and what advice you can give a long suffering me

Thanks in advance

dippy3103

My 7 year old son has HMS. He has orthotics in his shoes which have made a huge difference to the amount of pain he is in.
He was having a lot of leg pain and his hips were poorly aligned because of flat feet.

Hope you get some relief.

trailingspouse

Could you get a referral to a physio via your GP?

theoretica

Have you got the best possible fit/adjustment of your office chair?

penguinlegs

My daughter has hypermobility due to another condition and she has had referral to biomechanic dept for orthotics in shoes. This have helped align her feet and helped the pain she had in ankles/knees and hip.

jenniewb

I was diagnosed with HMS in 2011 after years of back pain and joint issues. I was told by my GP that the reason for my back pain was a trapped nerve which due to my weakened bones (osteopenia) means my nerves are more likely to fall out of sorts with the smallest of movements but as I am hypermobile means it is even more likely to happen. I occasionally have sciatica as well


I have been given pain killers and more pain killers, I worry about taking them for many reasons; the effect on my liver, the fact I will need to up-the-dose the more I get used to them, the sedative effect and effect this has on my day to day life....so I try not to take the pain killers and try to re-adjust how I tolerate pain which is not easy but the more you do it the more you can build up your mental strength, having said that, there are times when pain killers are the only way, mostly at night or if I have to be sitting very still in a mildly uncomfortable seat for a while.


I was suggested Pilataes which I do but if anything I find this can make things worse. Pain relief is not why I do Pilataes, there are other benefits though and these outweigh the cons. I think the issue is that at any one point if I am moving too fast or trying to focus on one part of my body, another part decides to become lazy and my joints take all the strain, the best way to describe it is if you have ever had or been around several squabbling children: you focus on one and the other two start bickering, this is what happens to my joints when I focus on my core, so I have to be very careful to keep myself in check or I cause myself more back pain because I lose my posture or my form elsewhere. Not easy and needs a lot of 100% attention!


I was also sent for acupuncture which I did for 6 sessions. However it was poorly given as ideally you'd have one week following another but I must have hit the top of the waiting list at the wrong time as I think I only ever got 2 weeks in a row, every time I tried to book either there were no free spots the following week or the nurse was away...I noticed it hurt like crazy to have it done but this was due to my muscles being so tight because they were over-worked. I think to be honest the best thing I could have been referred to was a proper sports massage. I have had a sports massage in the past (NOT the same as a relaxing massage!) and have found them helpful, but they are not cheap and not available on the NHS!


I would suggest getting a session or two with a physio, explain what your situation is and that you can only afford a session and need as much advice as possible, I would say get referred to an NHS physio but I have had too many bad experiences with NHS physios over time (too many different experiences to detail here!) to suggest going to see one, but if you feel it would help then do speak to your GP.


There are groups and forums and I think a charity which can advise and give information on HMS and all it's variations, if you have any questions on what has helped others it may be worth asking them too.

lolarosa90

Thank you everyone for your advice.

Yes I do have a special chair at work that is adjusted for me which is fine, although I still have to move about a lot to stop myself from stiffening up. Not easy when you have a really small office and an in a rough area.

I do a lot of walking when I'm not at work which helps my back but mucks up the rest of my joints >_<. I will see if I can get the insoles for my feet though. I think that will help a lot.

I'm moving away in the next few weeks so will see a new doctor about it, the doctors I go to at the moment are all really dismissive about it and don't seem to know much about it. It was only when I was sent to physio for my knee (I dislocated it a few years back) was when I learned that I had it and even he said that doctors don't see it as a real condition!

My mum also has it, mostly in her knees and is in immense pain with hers, she can barely get up stairs. It's turning into arthitis (she's only 45) She went to the doctors and they basically told her they can't do anything until she is pretty much disabled. I understand with NHS cuts etc, but it's horrible to be in constant pain.

The oesto did mention Pilates, which I have done in the past, to strengthen my core as my spine is pretty weak. I will give this a go once I move away, everything is pretty crazy at the moment and just don't have the time.

I hate taking painkillers all the time too. I was put on some very strong anti-inflammatries when I first went to the GP about it and I was so zoned out I could barely function! I started taking them again a month or so ago when I was in a lot of pain and they barely did anything (still in date). I use Volterol whenever it gets really bad.

I'll see if I can scrape together some cash once I get paid to go the oestopath next week. Just need to get this nerve outta my hip!

Thanks everyone who replied!

NigeWick

lolarosa90 wrote: »

I was just wondering if anyone else experiences this and what advice you can give a long suffering me

I had sciatica and got my doctor to refer me to an NHS physio. She was very good.

Tennis ball and stretches helped me. Sit with offending leg parallel to the ground, curl toes towards head and slowly tilt head (extending back) until it "bites." Ease off and repeat a few times, slowly working up to fifteen. Do this every couple of hours. After awhile the symptoms should start easing and then one can do the stretch less often. This was effective for me.

Before I got to see the physio I Googled sciatica and found some videos of stretches to copy. Also, tennis ball into the hip pressure point by laying on the ball and moving the body to get an effect called "good pain." Yes it's uncomfortable but when controlled not really painful.

Mainly, get your doctor to refer you to a physio who will properly assess you and give you the appropriate stretches as you may require different ones to those I did.

I still do that head tilting stretch every morning at least.

jenniewb

Just a note on the Pilataes and Osteopath, make sure you do your research first. I've been to a few different Pilataes classes before and seen quite a few physios over the years and it still amazes me that there is such variation in those dispensing advice or instructing a lesson, I've had "roll downs" which were instructed as "reach to touch your toes", never mind any sort of rolling or core stability. I've also had such good classes that I've walked away thinking I'd not done any work, only to be feeling it the next day- the tutor had been so good that we'd not even been aware of how hard we were working. It takes time to find a decent tutor and a lot of asking but they do exist just as good physios exist and when you find them you know almost within minutes why you spent so long looking!

Racheldevon

Hi


I also have HMS/EDS 3. If you're not having much luck with your GP when you move areas, ask your GP to refer you to Professor Graham at UCLH in London (I'm no where near there, but he is nationally and internationally very well regarded in this field). I was able to see him on the NHS. He does however also have a private clinic. Either way you may find this gets the ball rolling for you in terms of services.




Alternatively your GP could liaise with Prof. Graham & seek to find out if anyone near you has a specialist interest in this area - for example in the South West there's now someone in Bath.
With regards to Pilates - yes it can make a difference, but the quality of training varies hugely between practitioners - go based on recommendation, and really question the extent of the training the person has had - avoid those that have done short courses - that's probably ok if you're generally well but with such conditions you need people that are well trained.
The one thing that's made the most difference to me, if good physio - there is one under Prof Graham at UCLH, who I've seen. However, I've found a better private physio more locally, and it's made a huge difference.
Also I'm not sure if you have a dual diagnosis of the EDS 3 which is quite common, but be aware that manipulations associated with osteopath etc are contraindicated for those with EDS. I see someone who is does acupuncture, but recently completed training in osteopathy, and I didn't realise this until then. Also, relation to the osteopathic treatment you're getting - unless you're being given exercises to correct the muscular issues and strengthen the ones that are weak etc then the problem will keep returning, which is why for me, I've stuck with physio.
Good luck to you - it's taken me a while to find a combination that keeps me pretty well joint wise
It might be worth seeking a new access to work assessment to review your other work space equipment/needs.