I had my first (and last it would seem) rheumatologist
appointment today and was finally diagnosed with Benign Hypermobility Syndrome (only took 15 years of being told I was making it all up and it's in my head!). The consultant is referring me to a geneticist, physiotherapist, occupational therapist and for a heart scan to check out the valves stating that due to family history I'm likely to have Ehlers-Danlos which he described as being a vascular type of HMS - I'm all confused with the definitions of each one so will have to do more reading on that.
I am over the moon that finally someone believes me and I didn't have to spend a short lifetime trying to convince him - whole appointment was less than 20 minutes!
As well as the onward referrals he's given me Amitryptyline to try and is going to write to my GP suggesting a pain management protocol and that if they're not happy with that to refer me to the pain clinic for further help which may be especially useful due to intollerances to a variety of other drugs.
If I were capable of doing a jig I'd be doing one right now! But I'll settle for a fleece blanket and a cup of tea in celebration that someone in the medical profession actually believes me and has some understanding of the difficulties caused.
The doctor said he didn't need to see me again and that the onward referrals would be the most use to me. He explained all about there being no cure but helping myself is the best thing i could do and was understanding when I said that I really wanted to help myself and know that one way of doing this is to lose weight but I've struggled to do this because I don't physically have the energy to do exercise.
He also stated he'd copy me in to the letter to the GP so I could use it to prod my GP in the right direction because the tone of my GP's letter was one of disbelief and that the appointment with him would be a waste of time - he commented he would rectify their belief for me.
It's a shame I don't need to see him any more because he was very nice