Greater Trochanteric pain

Last Tuesday I had a physiotherapy appointment regarding my hip pain.  My physio doesn’t have a huge amount of experience with Ehlers-Danlos Syndrome (no-one in the entire north of England does) but she is a specialist senior Rheumatology physio and does have several other EDS patients.  I saw her on and off for a year in 2013 and, although we didn’t make huge progress as my ME makes any kind of exercise almost impossible, she was hugely sympathetic and understanding of my situation, listened to me and didn’t force me to do anything which would make my ME worse.  If only health professionals knew that this kind of attitude helps as much as actually treating the problem!

The pain started about 2 months ago with an ache deep in my right socket joint where my leg bone meets my hip and a distinct sub-luxing clicking sound if I moved my legs apart.  Eight weeks on it’s a constant deep pain in the joint, hot burning muscular pain down to my knee, stinging shooting nerve pain down to my knee (both of which keep me awake at night), pain in my SI joint, pain along the top of my pelvic bone and, just so’s my left hip joint doesn’t feel left out, it’s now started to hurt too.  Super!

My GP guessed, correctly, that it was Greater Trochanteric pain syndrome (formerly known as GT bursitis) and my physio agrees.  Which, in some ways is great, as it means there’s no actual problem with the hip joint, but GT pain is apparently a bitch to treat and can be very troublesome.  Tell me something I don’t know!

I can’t have many of the treatments which a ‘normal’ person would for this condition.  I can’t risk steroid injections, as I’ve reacted to oral steroids in the past due to my Mast Cell Disease.  Ditto with ultrasound treatment (weird, I know!) and acupuncture.  So it’s down to the basics:

  • Ice, 3 times a day (as I type this sitting up in my bed I’m having the equivalent of brain freeze in my butt!)
  • Ibuleve (ibuprofen) gel every 4 hours (I can tolerate topical pain relief, just not oral) to reduce the inflammation
  • Rest (for a whole month – somebody shoot me 😉 )
  • Crutches.   I’ve had to have gutter crutches which take your weight through your whole forearm, as regular crutches would totally bugger up my already weak and highlyhypermobile wrists and shoulders.

    Photo of gutter crutches

    Ignore my jumper – it’s long and usually down over the TENS machine clipped to my wasit and SI belts but I’ve hitched it up to show you the full ensemble!

  • Bracing – I’ve bought another second-hand SI belt off Ebay and am using that slung slightly lower down around my hips to stop the joint sub-luxing.
  • My trusty TENS machine, which won’t help the joint heal but does take the edge off the pain.

I have to go back in a month with my progress.  It’s been nearly a week now of not doing my usual activities and I have to say……………the pain is worse than ever 😦

The day after my physio appointment my Dad had his hernia operation.  He’s doing fantastically well and you would never know he’s had surgery, other than the fact he can’t walk far or drive for the next 2 weeks.

Due to all of the above I didn’t make the EDS conference in Birmingham.  I can barely sit, stand or lie due to my hip and pelvic pain so there’s no way I’d be able to sit for nearly 3 hours in a cramped train seat, then all day in hard conference chairs (n fact, the mere thought makes me wince), plus I didn’t feel I could leave my dog with my parents as neither of them are able to take him out (my Dad’s surgery wasn’t on the cards when I booked my conference tickets).  I’m gutted I didn’t get to meet any of the people I’d planned to but at least I won’t miss out on the lectures as EDS UK are putting them up in the member’s section of their website soon.  I’ll let you know if I discover anything new once I’ve seen them, particularly the talk from Dr Seneviratne on Mast Cell Disease in Ehlers-Danlos.

For anyone else experiencing hip pain, there are some really good slides from the Ehlers-Danlos National Foundation’s 2013 conference online here.

On a totally different topic, a group of doctors at Beth Israel Deaconess Medical Center would like to understand the bowel and stomach issues that might affect patients with inherited connective tissue disorders.  They have put together a survey which will take about 25 minutes to complete (it’s very easy) and I would encourage anyone with a confirmed diagnosis of Ehlers-Danlos Syndrome or Benign Joint Hypermobility Syndrome to take part:
https://hms.az1.qualtrics.com/SE/?SID=SV_1YwLC0XvGWi9gP3

 

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8 thoughts on “Greater Trochanteric pain

  1. kneillbc

    I’m so sorry your hip is giving you such trouble! I separated my pelvis when I was pregnant, I have had recurring sciatic pain since I was a kid, and my right hip is one of my worst joints, so although I’ve never had exactly what you have, I have some idea of how debilitating hip pain can be. Rest- almost impossible, because it’s so hard to find a comfortable position for your hips! Don’t take this the wrong way- but you look quite special in that picture-all those lovely contraptions!!! It’s too bad that your body isn’t able to tolerate things like acupuncture and chiropractic, as I know many people get relief that way. As well, the TPI treatments I am getting are helping a TON with muscle imbalances- I would imagine that if acupuncture wasn’t tolerable, then this DEFINITELY wouldn’t be- it’s so, SO much more intense than acupuncture. It’s fascinating g how one thing is great for one person, and either horrible,mor merely useless to another. I’ve had TENS before, and it wasn’t horrible, but I never got the point, because it does zero for me. I remember talking about it with my physio, and she said that it works for most people, but not all! Such fascinating bodies we have to put up with, eh? Sometimes I wish I was a bit less ‘fascinating’….

    On the other hand, you sound like you are in good spirits, and very relieved that your Dad’s surgery went well! I know that was weighing heavily on your mind. How is your ME flare? Settling? I hope that your hip sorts itself out sooner than later!

    Be well,
    Karen

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    1. bertieandme Post author

      So true Karen that we’re all different – I couldn’t live without my TENS machine for my back pain!

      My ME flaire has subsided, thanks so much for asking 🙂 Still in an EDS pain flare but you can’t have everything in life 😉

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    1. bertieandme Post author

      I’m sorry Di I’m not well enough to correspond individually via email – I have so many visitors to my blog I’d just be overwhelmed. Is there something specific I can help with? Jak x

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  2. Jenn

    Again, I don’t know where I’d be in my journey without your posts. Just when I struggle for solutions, you post just the right information! My first joint dislocation years ago was my right hip. Got that under control and now, years later, my left hip has given way! Oh no! It was like suddenly having two hips of jello and blinding pain! Been searching for a supportive device for walking and balance and those gutter canes look good! I’d never heard of them before. Thanks for the post. I hope you are getting slowly better and that the EDS flare mellows out soon. Hugz. Jenn

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    1. bertieandme Post author

      Sorry to hear you’re suffering Jenn. My hips have never bothered me before, so I’ve no idea why they’ve suddenly decided to go to pot! Can’t remember which country you’re in, but if you’re buying crutches I’d recommend Smart Crutch http://smartcrutch.co.uk/purple-smart-crutches/ They are fully adjustable, come in all sorts of colours and I’ve heard good reviews from other EDS people about them. They are a type of gutter crutch, which distributes all the weight through your entire forearm which is vital for me as regular crutches put all the weight through your wrist and hand and mine would break in half a day doing that! If I discover I need cruches for extended periods I’ll def be treating myself to some Smarts. Jak x

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  3. emmahammer

    Hi there. I too have EDS & hip pain. I wonder if I have the same condition. I also have hard “belts” of tissue that runs over each side of my hips. It looks like I’ve had my knickers on too tight. I’ve wondered if it is scar tissue formed from the constant inflammation – killing off cells as it goes. The scar tissue always hurts and then I have flare-ups just like you’ve described where no position for too long is comfortable. Thanks for this post. I will ask my doctor about it next time I see him. I really feel for you. We are brave silent warriors. I see this is an old post. I hope you recovered as much as you can.

    Emma xox

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    1. Jak Post author

      Really sorry to hear you’re suffering the same hip and pelvic issues as me Emma. As you say, this is a fairly old post – I ended up being on crutches, and on exercise rest, for 9 months before it settled down 😦 It’s never been right since if I’m honest and I’m currently having another flare similar to this. Sorry to sound negative! Hopefully yours will be easier to treat if you don’t have the drug allergies associated with Mast Cell Disease – I’m sure some proper painkillers, antiinflammatories and a steroid injection would have helped a lot, as would acupuncture or dry needling. Jak x

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