Raising Awareness of Joint Hypermobility Syndrome
I am writing to you to ask for your help in raising awareness of a pain condition.
I suffer from Joint Hypermobility Syndrome, this is a pain condition that affects the joints and is also known as being Double Jointed. I have this in my knees, elbows and wrists. One day I can be in constant pain, and the next day I can be fine. Myself and other sufferers of this condition cannot plan ahead as we do not know what we will be like on that day.
I live in Fife at the moment and I feel that I have been left out by NHS Fife due to GP’s not knowing about the condition and having to wait months for referrals to Physiotherapy and Rheumatology. Last year I seen my physiotherapist but due to my pain not being too bad I wasn’t referred to Rheumatology, however, months afterwards the pain got worse and gradually became more constant, my GP then referred me to Rheumatology through the physiotherapists diagnosis. I didn’t receive any correspondence from the Victoria Hospital, Kirkcaldy regarding my appointment, so in January, nearly a year after my GP referral, I visited my GP to get things sorted, I was shocked to learn that they would not see me due to my referral not being from my physiotherapist.
After this I was very disappointed that NHS Fife had basically left me in the lurch and not knowing what was happening. I thought it was their duty to inform patients of any matters that arose with referrals; I was obviously shocked at how this has been handled. So I had to have a referral to my physiotherapist again to have my referral to rheumatology put through. For a year I have basically been put through hell, stress and a lot of anxiety (to which I already suffer from along with Panic Disorder, Health Anxiety and Death Phobia). I was recently in contact with a sufferer in Aberdeenshire who says she has basically gone through the same treatment as myself and other sufferers in Fife, being left after appointments etc. and as I am moving to Aberdeen, I am scared of the outcome to which may happen up there as I will be living away from my parents.
*One study on patients with “joint hypermobility syndrome”, a disorder similar if not identical to EDS III, showed that 78% had signs of dysautonomia, such as orthostatic hypotension, postural orthostatic tachycardia syndrome and uncategorized orthostatic intolerance (Gazit, Nahir, Grahame, & Jacob, 2003). These patients also had evidence of a-adrenergic and B-adrenergic hyper responsiveness.
I, along with my HMS Fife Group leader have started a petition to ask NHS Fife and NHS Grampian to give more help and information to HMS Sufferers as we cannot cope with what is being done to us; you can find my petition by clicking the following link: http://www.gopetition.com/petition/44197.html.
Also, a dear friend of mine who also suffers from Joint Hypermobilty and Fibromyalgia etc., emailed Professor Mathias, who is based in London about her condition, she talked about how she felt her conditions were not looked at properly and was feeling let down. She described her symptoms to him, which he promptly replied to, however, he stated that without seeing her, he could not give any comments on a diagnosis. My friend was asking if she could see him privately in London, but due to the pain and comorbities that HMS can cause, she is unable to travel. I would like to state that she has given permission to be interviewed, if need be, at her home.
HMS Sufferers and myself are hoping that coverage (be it reports, interviews etc.) from yourselves can help both NHS Fife and Grampian do more for us and to raise the awareness of the condition more.
If you are in need of any other information, please do not hesitate to email me and I will pass on as much as I can to you.
Pamela Anne Carpenter
On behalf of HMS Sufferers in Fife & Grampian
*Taken from http://www.dinet.org/what_causes_pots.htm