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Ehlers-Danlos Support UK
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Hip, Pelvis, Groin and Lower Back Pain. Help needed as Difficulty with standing and walking.

Really struggling with pain in hips, groin, pelvis and lower back, which is making walking and standing still even more difficult than usual. My usual GP is away until the 24th so I've left a message with rheumatology. Previous advice was to try to stay out of the wheelchair. (Rheumatology have said they expect me to be a full time wheelchair user within 5 years so don't want me using it now unless absolutely necessary). I use forearm crutches to mobilise normally but I'm really struggling. I have a diagnosis of hip bursitis in the left side but the right is in a worse flare than the left. Pain meds don't work and I can't have physio. I'm at my wits end and my body feels like it's falling apart. I had an injection 2 weeks ago, to turn off the ovaries as I'm having an Endometrial Ablation at the end of August, but I'm not sure if it could have caused the flare. They said I would get the symptoms of menopause, hot flushes and the like, but said they couldn't say how it would affect the ligaments and joints due to EDS. Any advice would be appreciated. Xx

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Hmmmm. I agree it could be hormonal especially with the timing of the injection. Also have a look at FAI (Femoral Acetabular Impingement) . I live with this in both hips and surrounding areas. Its a pain being in pain, no one realises how it grinds you down. Gentle hugs today x

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Thank you. I'll take a look. 😊 xx

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It could be hormonal - I am currently in peri-menopause so experiencing naturally what you have been given hormones to do. I have much greater pain in hips and abdomen, corresponding directly with what is going on with my ovaries (no idea what's going on - almost constant period, only veering from light to super, super heavy), so I am going to ask for HRT but we'll see what they offer.

Yesterday, I just gave up and went back to bed for a couple of hours - don't push yourself.

I don't imagine the doctors know what additional effect hormones will have on EDSers - perhaps they offer something to help with the pain - steroid injection?

Take care.

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Thank you for replying,

Gynaecology were very unhelpful yesterday but I saw a new GP who was magnificent in comparison. She seemed quite switched on about EDS/JHS and explained what my body is doing in reaction to the hormones they've injected. My iron stores are already way below the recommended limits so the flooding I've been experiencing will only make that worse. She said the injection hasn't worked in that respect but another is likely to make the symptoms worse. She feels a hysterectomy would be more appropriate, especially with family history, or if they are intent on doing the ablation then they need to do it quickly.

She is calling the consultant on Monday to discuss it.

There's no guarantees and it won't help what I'm currently experiencing in the short term but I feel a little more positive.

I realise the menopause will happen at some point but I guess this episode has frightened me, especially as meds are useless, so the future is a concern.

If HRT is the way forward to help you manage your symptoms then I hope it works for you if they allow it. Anything is worth trying even if it just reduces the effects.

Xx

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That sounds positive...and hang on to that GP. You may have found a rare treasure.

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Hiya LoopyLou,

Sorry you've been having a rotten time.

Just wanted to say, I have a friend with EDS/JHS who had the hysterectomy option in her 30’s, and she has hormone patches. I think she had a bit of adjusting to do over time to find the right hormone balance, but is a lot better now.

I may be a bit out of date with this, (maybe HMSA would know), but there was/is a gynae who is expert in EDS at Kings College Hospital London, who might be consulted re hormone balance for EDSers, cos as you know, in the oestrogen-progesterone balance it's progesterone that tends you make your tissues lax. Apparently doctors can consult consultants by email so it may be worth mentioning to your GP.

However, my friend didn't have that consultant, er, consulted, she just found her balance eventually.

So glad you have found a GP with some understanding.

Best wishes from Boombiddy.

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Hiya,

I contacted a Consultant that is part of the panel from EDS UK but unfortunately I had no response. Rheumatology didn't get back to me either so I felt a little on my own with everything.

On Wednesday last week they carried out a womb ablation but I'm still feeling the effects from though including major cramping.

I spoke to the specialist nurse who explained the injection would have thrown me into the menopause over night so with the way my ligaments and joints reacted it's likely that I'll need to be supported through the actual menopause to fund the right hormone balance. For now I should get back to what is my normal within the next 6-8 weeks. It's difficult to know what normal is anymore but I'm aiming to return to work next week, after being off sick for 6 months, so I'm hoping I can manage.

Thank you for the information as I really appreciate it. 😊

It may take a few months to know if the ablation has worked but having a small cervix is apparently a good thing.

I'm still very much struggling with standing up, especially in the same place, but at least at home I have surfaces and a chair as soon as I need it. Work may be a different story but I have the wheelchair to fall back on if I can't manage.

I'm pleased your friend has found her balance hormonally as hopefully the effects are then less on lax ligaments etc.

Xxxx

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Hiya LoopyLou, thanks for your reply!

I wonder, some of your symptoms remind me of symphysis pubis dysfunction. It might be worth looking up.

I have it and of course it has a knock-on effect on the sacroiliac joint so the lower back 'goes' too.

While you're suffering, it might be worth trying a symph belt, even if it's just around the house to give yourself a break. Physio can help strengthen that area, or Clinical Pilates with a Physio. It really helped me, but now I just don't have the energy to get there due to the POTS...

A physio at my local hospital gave me body-width Tubigrip as an alternative to the symph belt, this also works and she suggested double it back on itself for a stronger effect.

You know, I am thinking of one day trying a good old-fashioned corset! Maybe our ancestors weren't as stupid as we make them out to be. Mmm, wasps waisted corset, lovely silk undies tooo...

Snap! Right, and we're back in the room...

Of course, it's managing to get these things on with our bendy fingers and subluxations thumbs.

Best wishes from Boombiddy.

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Hiya,

I had SPD pretty severely in my last pregnancy but that was 16yrs ago now. I don't think I ever fully recovered from it in honesty. I was told I'd just be one of the ladies that would always suffers pain. My JHS/EDS diagnosis only came 4yrs ago. I'm affected everywhere, apart from my elbows, probably like most of us so I don't need to go into detail.

I've never thought of trying a tubigrip round the middle. I've tried different style belts and supports to no avail. They did try an old fashioned style corset with me but my lower spine dips in so far they could put their hand in the gap. I'd never be able to do it up anyway for the reasons you explain.

Our bodies are a nightmare and it would be nice to find a medical professional that can oversee the inner parts as well as the outer. Rheumy offered me support for specialist hydro, I've been kicked off every normal hydro and physio course, but they've not kept to their promise. Next referral is to London and I'm not going to let them say no. πŸ˜‰

Look after yourself and thanks for the advice as I'll look into the tubigrip. I might just need some help to get it right. Xx

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Funny you should say that LoopyLou, my sister got SPD during pregnancy and never recovered. Her son is nearly 19.

I looked up SPD while trying to help my sis and it was then that I realised actually some of my painful symptoms were SPD. I got it from... wait for it... a sneeze. A mal-coordinated sneeze in 2006 ruined my mobility. Well that and the POTS.

ANYWAY, I digress. The point was, when I looked it up, the literature said, there are a tiny proportion of people who never get over it, and they are EDS sufferers.

Maybe useful info, I don't know.

All the best,

Boombiddy.

Ps I did 2 very long-winded replies to Nero13 which talk about the clinics to get referred to, maybe it is worth looking through them for info about clinics to get referred to, as I think they would be relevant to you, particular ones at UCLH and Stanmore.

Xx hope it all goes well for you

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Argh forgot to mention, & you may know already, Pilates Physio appears to be the best option for SPD. I can say it from experience too as it helped me.

And, just remembered, the penny dropped a few years ago that with weakness in SIJ, walking with a stick helped keep the pressure off it and, despite having to stop & start lots (POTS, joints, yada yada), it helped my SIJ keep me walking for longer. Sorry I may now be telling you too many things you may already know, but it may help any newbies reading this...

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Hi Boombiddy,

I'll take a look but Stanmore is already a no no, as I won't be able to do the necessary exercises, but it's the Hypermobility Unit at UCLH that I'm hoping to be referred to.

I used to use a walking stick but ended up doing damage to the opposite side and my hands. It's very much forearm crutches now and a wheelchair for backup. Unfortunately though that's caused neck and shoulder issues. We can't win.

My spinal consultant refused to put me on the Pilates course as even with the slightest of movement from legs and arms, in the basic Pilates position my pelvis moved as its too unstable. With no support physically, locally, it's why I need to look beyond the current hospital. They even told me that my pain levels are unusually high for someone with EDS. I gave birth to two children with no pain relief but there's no respite from this level of pain. As meds don't work and they will no longer discuss pain relief I worry about the future. I know that if I don't take charge there'll be no help at all.

I'm shocked that a sneeze can do so much damage although I guess anything is possible when everything's bendy.

Thanks again for all your help. 😊 xx

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The course at Stanmore would be tailored to you. Many, many people with EDS cannot do the things you cannot do, and Stanmore work with that. Their physios are second to none. And, they help you learn many ways to manage pain.

Unfortunately I have had to pay for individual Pilates sessions with a physiotherapist as I am in a similar position. I should have said, even if you were able for a group, it would have to be one run by a specialist Physio. Our local Physio clinic is full of physios trained at Stanmore, I forgot not everyone is so lucky.

I know what you mean re hands, neck, upper body... when they are worse I can't use a stick, and right shoulder seems to be in permanent subluxation for a few months now, and r elbow paining. What was I thinking suggesting that, sorry. I just didn't know how bad you were.

Re pain, there is hope. I had a brilliant pain management course at St. Thomas's Hospital 18 years ago, so I have learnt so many physical and mental ways to deal with pain, it is dreadful to think how I would be now without that course. I would be on masses of painkillers, for a start.

So St. T's massively helped with chronic pain, but now I need a refresh geared to EDS and injuries, as the EDS injuries are more frequent now. That is where Stanmore could help me.

I really would encourage you to think about Stanmore. They tailor to what you can and can't do and work **with** you, they understand how lax and unstable tissues behave, they help you manage pain, and they are so supportive. You would also have access to their brilliant custom orthotics department, OT's... And they understand POTS is different with everyone and help you manage with it.

Best wishes, Bx

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My local hospital said pretty much no to everything especially Stanmore. I'll have a chat with them at my next Rheumy appt and will start putting my feet firmly where they need to be. There have been so many mistakes with my care and I honestly think they're worried about being found out if I go elsewhere. The last appt said I'd be a full time wheelchair user witching 5 years and there's nothing they can do to help me. I get the feeling there's a lot more they could be doing. I'll keep you posted. πŸ˜‰ xx

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Thanks LL.

Such a laugh isn't it! Dr. Kazkaz at UCLH would get you referred to Stanmore anyway, so you can just let em get on with it if you want. Plus maybe Dr. Kazkaz could refer you for hormonal/gynae if still relevant then.

I like their cheek though! Stanmore is the National hospital for orthopaedics so anyone in the UK can be referred there who needs it. And they're apparently reasonable in their fees too.

(Let's face it you rheumy & GP have probably wasted so much money sending you round in circles, they might as well send you to the right people and save some cash now.)

Feet firmly where they're supposed to be made me laugh. Swift toe to the rump...

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If your period problems cause pain, are heavy floods often with clots I know its difficult but avoid progestogen im a 70 year old zebra who is now almost a cripple cauded by private heath this madness will stop but first we all need to educate all GPs and doctors

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The learnt that the hard way but mainly because the GP's wouldn't listen. πŸ˜•

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