How to deal with the pain?
Posted , 4 users are following.
Hi,
I am 17 years old and was diagnosed with type 3 ehlers danlos about 3 years ago .
I have always suffered with dislocations even when I was a baby but my mum was always told I was "double jointed" and that I would just grow out of it. Pretty much all my joints partially or fully.dislocate, including my shoulders, collar bones,hips,wrist,shoulder blades and just about everything else
I have also always suffered with pain but recently it has become unbearable and it always seems to be there I get it from brushing my teeth, washing my hair, writing and when I am in bed and from everything else.
I was just wondering if anyone has found any ways of dealing with the pain? other than takingparacetamol as they no longer work and using items such as deep heat because I have extremely sensitive skin due to the EDS
0 likes, 3 replies
toastie
Posted
Do you have physiotherapy? It can be a problem getting treated because the system is designed to treat one injury at a time. I will book an appointment for one joint, but a week or more later when I get to see the physio it will be a different joint which is the worst pain. If your physio is understanding they just treat you as you are on the day, but some won't and don't really understand that I may have booked the appointment because my knee gave way in the shops meaning I could barely get home, but today my knee is not hurting while pain in my wrist and shoulder kept me awake last night.
For me the best physio treatment is electric current run through pads on the skin into the tight muscles around the problem joint of the day. It releases spasm and I'm told it also releases endorphins so you feel more energy and less held back with the pain. It doesn't stress the skin at all.
If its any comfort, I dislocated knees or jaw on a weekly basis at your age, but it has hardly happened since my early twenties except little bones in my hands and feet which I shake out to relocate. I also slept around 14 hours a day at your age, tiredness is a vicious circle, I had problems with other people's expectations, but sleep helps the overall pain (soft mattress required) which then means you can stay asleep better for longer and enjoy the hours you are awake.
amylou1996
Posted
thankyou for sharing this with me, I will have to ask about the eletric current therapy because at the moment
all I am being given is exercises which are just making everything worse.
I didnt know that tiredness was part of this, so that also helps alot as I have mentioned it to the doctors and
they basically told me I was "just being a lazy teenager" and said it was nothing related to the erhles danlos.
thankyou for your help
tymrose30 amylou1996
Posted
I to had many injuries growing up but as I got older they started to get etter but my muscles and joins get more flexible.
I tried the pysio for years and hidro therapy but just came out needing to rest even more or not be abke to get out of bed the next day so I hsd to give it up.
I found the best for me was taking up ballet again and starting yoga, strengthening my muscle seven though thjs takes longer tben for normal people was the best thing. Im still in pain everyday and have trouble walking with my hips but it means I seem to get worse slower then I did and the stronger muscles suport my joins so thry seem to hurt less. I am on a high does of codine paracetamol and amatriptaline, but the work I put in over the years really helps and now if I dont do something for even just a few days I do feel much worse so its something to think about, even if its just simple strengthening exercises at home, but give it time it took quite awile before I really felt a real difference but now after 8 years of work I would no way give it up.
hope this helps and any question please ask tym