My Current Situation With Hypermobility Type Symptoms

Hi Everyone!

So I haven't yet written a post about what Hypermobility Syndrome & Ehlers-Danlos are. Part of that is because I'm finding it difficult to find information myself! So what I'm going to do is take you on my journey to get a diagnosis.

This past week has been a tough one for me. I was cleared to go back to work by a Dr at my GP surgery (not my own GP as she is on holiday). I work as an instrumental music teacher & in a retail store. I went back to my retail job on Monday. In the three hours I was there my ankles gave way three times. Then my left hip gave way for the second time. Work called an ambulance & I spent the evening in A&E. The Dr in A&E was very good. She sent me for an x-ray & when she was happy that there was no damage done to my bones, she discharged me with additional pain medication.

I had an arthroscopy on my knee & while they were in the knee some debris was removed. I had spent a physio session in the gym to rehabilitate the knee & was pushed too hard, though I was very verbal about how each of the exercises were making my body feel. The following evening my hip gave way for the first time. As a result, a priority appointment was made with a different physio for an assessment. So Tuesday I spend my day at physio. I have to say that, after two injuries to my hip, I was finally listened to & a plan has been made to incorporate my suspected HMS/EDS. The physio paired down the knee exercises, gave me some for my hip &, at my request, some exercises for my core. I'm much happier about the direction of physio now.

Yesterday (Thursday), I received a letter in the post from the Hypermobility Clinic at UCLH. My neurologist (at UCLH) had referred me to them but the referral was rejected. The reason that was given was that, because of the high volume of referrals the clinic receive they are only able to accept patients from rhematology clinicians with a full report. The problem that I have is that I have been seen by my local rhematology team who have diagnosed me as having 'Chronic Widespread Multiple Skeletal Pain With Aspects of Fibromyalgia, Caused by Childhood Hypermobility'. I was given a leaflet for HMS & Fibro, told I didn't have either but that the leaflets might help & was discharged. My neologist was unimpressed with this, which is why he wanted me to be seen at the UCLH clinic.

So I'm in a bit of a pickle really! I've contacted my neurologist but don't know where else to turn to! 

Any suggestions greatly appreciated!

Tania x