"I have Ehlers Danlos, Hyper Mobility Spectrum Disorder and Fibromyalgia"

The Occupational Therapist who visited me was absolutely lovely. Listened to me and worked out what equipment would benefit me, and it was delivered in no time. I was very impressed and grateful for the assistance.

Far too much to say in a few words. Have had huge issues most of my life. Numerous very painful surgeries. Have needed most of the services for years now but the fight has been relentless to try and access these services. Long waiting lists and when I eventually manage to get an appointment, I come away frustrated and in tears as the usual words are, ”we can’t do anything to help you”. Seriously needs looked in to, there needs to be a specialist unit to care for patients like me, we get put to the services that don’t know how to treat the condition and the waiting lists for treatments that do take the edge of things are very long between appointments.

So instead of keeping the symptoms at bay they are allowed to peak again so you are back to the beginning of a vicious circle. I am suffering from depression and anxiety mostly due to the situation. Unfortunately, I need to pay privately to access help. Obviously, I am now unable to work so finances are limited. Have to rely on family for support to have treatment.

I have joined the EDS association, and I was absolutely shocked to hear everyone’s story was the same as mine. 20 plus years to eventually get a diagnosis, usually it is far too late for help as the damage has already been done. 

I am five weeks post-surgery after Bilateral Meniscipexy which has been unsuccessful, so I am now on the waiting list for TMG replacement. If my symptoms were taking seriously 20 plus years ago, it might not have come to this life changing surgery with serious risks. 

I could go on and on as it has been a full-time job trying to access help.

When I joined the EDS Association in lock down, as my pain was so out of control and no help available from anywhere, I was absolutely astounded by what I was reading. Most people with the condition had to wait 20 years for a diagnosis and unfortunately by then the damage is irreversible.

I have been referred to so many services and the waiting times are awful.

Orthopaedics now have different consultants specialising in different things, so you are not treated as a whole, you are waiting a year plus for all these specialists.

I hear so many excuses why things are so bad trying to get help, but I have experienced all of these problems and excuses for 30 years now, and unfortunately it just continues to get worse. I would be more than happy to discuss my situation in more depth. As this is just a tiny part of a very long story. 

Only place to be referred after all of that is the pain services.  

The treatment I do receive from the Pain clinic does help some of my problems, but the clinic is not fit for purpose. The waiting time to get the procedure repeated is so long, the treatment has well and truly worn off and you end up being in a worse state than in the beginning as the pain has built up to an intolerable level. Treatment should be repeated every four months, but the waiting list is every 9 to 10 months.

The only thing that would make a huge difference to my life now if making the pain clinic more accessible, more resources and receiving the treatment at the correct time.

On a more positive note, I am grateful for all the treatments I do receive, I know the NHS is so over stretched. The people working in the services are doing their best.