Just been diagnosed, family issues :/

Hi Kirsty, it is my first time replying on this forum, been on here a while but thought it time i say hello. I have joint hypermobility syndrome/ehlers danlos syndrome type lll. I understand your situation. JHS is known as an invisable illness and it is common for those with it to be told 'you don't look sick' or be accused of making up symptoms etc. Being diagnosed with a chronic condtion is hard enough and feeling no support from those around you is also difficult. the best palce to be is forums and sites with those who can only ever truely know what your going through.  JHS is a genetic collegen disorder and causes all kinds of ailments, symptoms, conditions and pain along side the general muscle, joint, ligament issues. The muscles have to work harder to support the joints that move around too much, they get over tired, the body gets tired. It is hard work just to stand up. I look 'normal' what ever that is but I have over 23 medical diagnosis of different things in the past 12 months and you would not tell if you was stood facing me in a room! Hope this helps if just a little and if you have anymore questions I will be happy to help.  Rebecca 

Hi Kirsty, I have also been looking for answers for around two decades, I was diagnosed 3 years ago, but was told i was at the mild end of the scale and there wasn't much to be done about it.   (not sure if the pain and fatgiue are related to this or not, as i also have a heart condition and just in the last couple of months was diagnosed by a Rheumatologist as having cfs & fibromyalgia (also i get very occasional complete remission periods of a couple of weeks - i don't know if people generally get that with hypermobility).  

He told me i was depressed and should have Cognitive Behavioural Therapy (i knew i wasn't depressed but decided to go anyway to show willing).  I was referred to a physiotherapist at my local hospital (an occupational therapist i think) who agreed i didn't seem depressed and that i was doing everything i should be with regards to fatigue

whilst i was there she also remarked on me being hypermobile (something i had put to the back of my mind given i thought i couldnt do much about it).  She also picked up on something that no-one else had previously - that i am particularly hypermobile at my hips and as a result the lower half of my back stays straight when i bend and so my lower back muscles have shortened, I also have flat feet which i had never realised could be due to this syndrome before.  

Unlike Rebecca i do not know what type I am, even reading about it on the internet i'm still confused.  

The therapist recommended that I seek out physiotherapy with preferably a therapist that specialises in either the "McKenzie method" or "trigger points" (as due to the hypermobility i also get sciatic pain). She also mentioned that acupuncture may be helpful and just gave me a couple of exercises to do in the meantime to keep me going.  I dont know if you can get any of this on NHS as I do not live in the mainland. 

I'm glad you came on here to talk to people cause thats what we are all here for.  Nobody here will think you are attention seeking, as we know what its like to have an "invisible" illness.  

I know its hard but try not to think too badly of those closest to you and try not to take it too personally.  Unfortunately, if they can't see anything wrong and can't feel your pain and particularly if they have never had to experience anything like this, unfortunately some people just don't have it in them to empathise with things they don't understand, or they think they do but because they can't feel what you do they quickly forget it and move onto the next thing.  Or they feel useless because they don't know how to help.

Unfortunately, we can be pretty invisible to the medical community too sometimes, i can't believe its taken 3 years to get this advice on a condition they knew i had.  Perhaps someone with more experience of this condition could comment as to whether I have been given good advice or not as I don't have much experience of it and can't actually afford to do this at the moment so I can't even tell you if it will help.

If others with more experience agree, it might be worth just visiting a physiotherapist just to find out about any particular issues you have, that like me, you may not be completely aware of.  

Not sure if you will find any of this helpful, but i hope so.  

Kirsty (also)

 

Hi Kirsty,

I have had this too. When searching for a diagnosis I had a lot people showing concern right up until I finally got one. Then they look at me as if to say "so you're double jointed? That's it? Why all the fuss?"

My partner was different though and has read up about it and even listens with sympathy when I moan endlessly.

I'm newly diagnosed and I'm hoping this forum will help me too.

Stay on here Hun and hopefully we can all help one another!