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.
- 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: