Been recently diagnosed with JHS just wondering about anyone's experiences.
I have many different diagnoses for my chronic hip pain and this is another in a long list. Although it makes more sense to me. The pain is in my hips neck shoulders and knees. But my hips are the biggest problem. Any advice?
Thanks in advance.
I got diagnosed with this two months ago after years of extreme problems with my hip.
My rheumatologist and consultant pain doctor are teaming up together to get me into the two different units at St Thomas as all other treatments and places I’ve been just haven’t done the job.
Did a rheumatologist diagnos you? Have they said what will happen next?
X
I'm waiting for an appointment with a specialist. Possibly physiotherapy. But need MRI and X-rays.
I know how you feel, I'm struggling with my hip badly too. I was diagnosed with EDS hypermobility what is very similar as your diagnosis. There are lots of braces available for knees but it's harder to find a solution for your hips. I use sticks and a mobility scooter to get around.
I’ve got ED that’s why they want to send me to St Thomas have you been there to their unit? Your so lucky to be able to get around I can’t even sit down in a wheelchair to go anywhere 
What treatments do you get for it can I ask? X
I can't sit down for very long too. Pacing has helped me a lot (rest before the pain becomes bad) and sometimes it helps to try different cushions for sitting on (they have a good selection at most mobility shops) I have one on a angle that stops my pelvis from tilting and take it with me if I go out for a meal etc
Sadly the cheap wheelchairs don't tend to be comfortable at all.
I have never been to the unit at St Thomas. I have been in treatment at my local pain clinic for the last 2 years. They have been brilliant.
Try the pain service at st Thomas, you don't have anything to loose.
My pain is much more in control since a started pacing but really struggling with fatigue at the moment.
I have had injections, physio, pain groups, mindfulness, scans, surgery and still see a pain psychologist.
There is also an Ehlers Danlos group on health unlocked but they don't seem very active at the moment but there is a very good support group on Facebook for people with EDS
Do you know about Dr. Francomono’s 75% Plan for Pain Relief. "Take, for instance that your medications take care of 20% of your pain relief. Then you use your TENS unit for another 10% reduction. Some Tiger Balm on your painful joints brings another 5% of pain relief. Maybe you could pull out your heating pad too for another 5% of pain relief. Then you decide upon a warm soak with Epsom Salts for another 10% pain relief. Deep breathing and some PT exercises combine for another 10% of relief. And then you watch a great movie for another 15% of pain relief. So now you have 75% of your pain managed effectively. How would your days be different if 75% of your pain was gone? Dr. Francomono’s plan demonstrates the importance of using multiple strategies…even if each one only makes a tiny difference, the difference made when they all are added together is significant.”
She is a EDS/HMS specialist in America.
Getting a fibro diagnosis
Axial Spa / Ankylosing Spondy diagnosis
Lack of diagnosis 
Unknown diagnosis
