So I saw my rheumatologist last week and the first thing he said was we need to agree on the diagnoses which was more than I thought he was going to say if I’m honest as I was literally wanting some acknowledgement on the hypermobile EDS condition.
He has decided I have:
- hypermobile EDS
- low B12
- possible low vitamin C – we are trialling a six week supplement on whether this helps things as large amounts of fruit aggravate my stomach (it was worse when I still had active disease from ulcerative colitis)
- easy bruising – which is it’s own condition who knew!
- possible fibromyalgia
So yeah a lot more than what I thought I had and as disappointing as that is to an extent I guess it gives me a break from just thinking that I am making things up. I said this to 00Steve and he turned around and said “I didn’t think you were making it up.” – I wasn’t even accusing him of that but I do worry that people think I play on things. Which really angers me because I have always worked even through some really bad flares and tried to get on with life.
So what is hypermobile EDS when it’s at home?
Well thankfully it is classed as the least severe of the collection of EDS which is short for Ehlers Danlos Syndrome. It is basically some genes are faulty and cause issues with connective tissues. The symptoms for this particular type of EDS are:
- joint hypermobility – this was something there was no questioning on as I score 7 out 9 on this scale
- loose, unstable joints that dislocate easily – this one is odd as I don’t fully dislocate but they do feel like they have dropped and I get horrific nerve pain until it settles back in place
- joint pain and clicking joints – if you have been around me when I bend over you would agree on this one
- extreme tiredness (fatigue) – this one is a mixture of different conditions I think from B12 and dehydration
- skin that bruises easily – I am constantly covered in bruises from the slightest knock
- digestive problems, such as heartburn and constipation – growing up with ulcerative colitis I didn’t get the diarrhoea I got severe constipation and even now with my ileostomy I pancake far more than I should do
- dizziness and an increased heart rate after standing up – this I have been suffering with for a long time and goes hand in hand with PoTs that I will talk about next week
- problems with internal organs, such as mitral valve prolapse or organ prolapse – I so far don’t suffer from this thankfully
- problems with bladder control (stress incontinence) – nor this
That is how it affects and has affected me in the past; the treatment isn’t straight forward either as it’s genetic and I guess it may vary from person to person – so these are the treatments:
- a physiotherapist can teach you exercises to help strengthen your joints, avoid injuries and manage pain
- an occupational therapist can help you manage daily activities and give advice on equipment that may help you
- counselling and cognitive behavioural therapy (CBT) may be useful if you’re struggling to cope with long-term pain
- for certain types of EDS, regular scans carried out in hospital can detect problems with internal organs
- genetic counselling can help you learn more about the cause of your condition, how it’s inherited, and what the risks are of passing it on to your children
I am being referred to a physiotherapist at James Cook University Hospital as one of their team is very knowledgeable on this condition. That really is the only one I can do as we know therapy and me so far hasn’t worked and the others don’t apply to the hypermobile EDS type.
If you want to know more on the different types of Ehlers-Danlos Syndrome please go to the NHS website as that is where I get my information on conditions from.