Disclaimer: This page has obviously been shared somewhere on t’internet and I now receive a huge amount of visitors to it. I’d therefore like to point out that the information was written a couple of years ago and I’m now more aware of how EDS in all its forms can affect the hands, causing various types of lumps, bumps and other issues. I don’t have Rheumatoid Arthritis, although people with EDS are more prone to wear and tear arthritis at an early age, and don’t have any swelling of the joints or restricted movement – the opposite in fact, as EDS causes over-extension. Excessive pain all over the body is seen in both EDS and M.E., the reason for which is, as yet, poorly understood. The same goes for muscle weakness. As we use our hands so much excessive pain and muscle fatigue, even on trivial exertion, is common.
I apologise for my dirty nails in the following pictures. I potted some thyme up in my garden yesterday but despite scrubbing with a nail brush til the skin came off I couldn’t get them squeaky clean. As we say in Cumbria “a bit of muck never hurt anyone” 😉
Many people with Ehlers-Danlos have significant problems with their hands. Anyone who has hands that look like mine is going to be prone to strains, sprains, ligament weakness, over-use injury, sub-luxation, dislocation, tendonitis and eventual arthritis (something to look forward to, yayyy!).
I had my first issues with my hands as a child, though of course I had no idea I had EDS at the time. My handwriting was appalling and I was constantly made to do lines as a punishment which was supposed to improve the situation. It never did. Writing made my fingers really tired but I didn’t know that wasn’t normal and that other kids weren’t suffering the cramps and pain that I was. I didn’t ever say anything because I didn’t want anyone to think I was a wuss and I thought everyone’s hands hurt when they wrote.
The pressure of writing with a pen resting against the middle finger of my right hand caused a lump to form there which I still have to this day. I don’t know what it is, I just know it’s not normal and other people don’t have one!
Now I’m older I have several different lumps on my fingers and wrists. I don’t know what they are either and thankfully they’re not painful in any way. They don’t fit the description for subcutaneous spheroids which are common in Classical EDS, as they don’t feel like rice grains and aren’t moveable. Neither do they fit the description for mulluscoid pseudotumours, again common in Classical EDS, as they aren’t on pressure points like elbows or knees and aren’t on or near any scars. As long as they remain pain-free I don’t think about them.
My nails (like my teeth and hair) have always been extremely soft and break right down in the wick where it’s painful to cut them off. I’ve never been able to grow my nails which as a twentysomething used to bother me but I now couldn’t care less about. For many years I’ve also had vertical ridges on my nails, which I know Diana Driscoll over at Prettyill.com has done some research on (unfortunately today I’m just too tired to trawl through her website to find it, but I definitely remember reading it!). I know these can be down to nutritional deficiencies but not in this case. She’s also commented on how her half moons disappeared and I too only have very pale half moons on my thumbs and index fingers – they’ve disappeared from all my other digits. Weird!
I might have the facial skin of a thirty five year old, but I have the hands of a ninety year old. My veins are excessively prominent both on my hands and fingers (I’m assuming due to thin skin) and I have the classic “elephant knuckles” of many EDSers (which still makes me question whether I have crossover Classical EDS). My hands sure aint pretty 😉
Despite everything I didn’t start having significant pain in my hands until I was in my early forties when all hell seemed to break loose. Pressing the button on the TV remote became painful. Picking up a kettle full of water became impossible. Taking the top off a jar of jam eluded me. Doing any activity involving continual pressure, like writing, sent my hands into painful spasm after only a sentence or two.
It was then I needed to start wearing wrist supports, Oval 8 finger splints and simply stopped doing many of the activities I used to take for granted. One of the best things I ever did was buy a hot water dispenser instead of a traditional kettle, which stays hot 24/7 and provides boiling water at the push of a button. It’s brill and only has to be filled every two or three days 🙂 Not lifting and tilting a kettle ten times a day has helped my wrist pain no end.
It’s amazing the issues we face every day without giving them a seconds thought. It’s only when I come to write posts like this, and concentrate on the disabling nature of EDS, that I realize the profound struggles we sufferers face in just about every aspect of our lives and once again I’m proud and astonished we all cope as well as we do!