Possible EDS? (15M) Have Fibro + CFS - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

2,553 members833 posts

Possible EDS? (15M) Have Fibro + CFS

saspa4260
saspa4260

Hi there, I am a 15 yr old boy looking for some help with EDS.

My cousin has suffered from similar conditions to me for many years and only in th past 9 months i have developed fibro and cfs/me

today i woke to find my shoulder in such excruciating pain i felt like a had dislocated it. My muscles are so weak i tend to frequently strain muscles and ligaments, as well as knee and back pain (family members with scoliosis but not noticeable for me)Have suffered from severe migraines for 5-6 years

Always had EDS in the back of my mind, symptoms do run in the family! Grandmother passed from autoimmune disease several years ago .

Any help appreciated!

also have myopia - (-4.0)

3 Replies

The best thing to do is have a look at the RCGP Toolkit for EDS, and then go through it with your GP. Your GP could actually diagnose this if they wanted to. But at the very least they could refer you.

rcgp.org.uk/clinical-and-re...

My son was 13 when he got his diagnosis of hEDS from a community paediatrician, so that is likely at your age who you could be referred to if the GP didn't do the diagnoses for you.

I hope that helps.

saspa4260
saspa4260 in reply to cyberbarn

thanks so much! website was helpful but wondering if eds can be diagnosed if no hypermobility?

i have had hypermobility when i was younger (splits etc. ) but wondering if that still counts towards criteria.

cyberbarn
cyberbarn in reply to saspa4260

There is an alternative for older people that asks if they used to be hypermobile:

̈ Can you now (or could you ever) place your hands flat on the floor without bending your knees?

̈ Can you now (or could you ever) bend your thumb to touch your forearm?

̈ As a child, did you amuse your friends by contorting your body into strange shapes or could you do the splits?

̈ As a child or teenager, did your shoulder or kneecap dislocate on more than one occasion? ̈ Do you consider yourself “double jointed”?

Many clinicians accept that rather than the Beighton score. They also say that for research purposes it is important to stick to the strict criteria, but for clinical purposes it isn't, doctors should use their clinical judgement. So if you used to be hypermobile that should still count.

You may also like...