This blog post is more for women with EDS but it is also for parents of an EDS girl, husbands, boyfriends and partners of EDS girls. I don't know all the links to WHY EDS causes this. I just want to document what EDS patients experience.
Heavy, clotted periods: People with EDS have a lot of blood problems and the periods can be very, very heavy. Some need medications to control the bleeding.
Worse Fatigue:
The fatigue that comes along with EDS in most patients will get a lot worse at certain times of the month.
Extreme Cramps:
The cramps with EDS (possibly to do with ligaments etc?) can be very extreme. Some people with EDS have been hospitalized because of the severe pain.
Water Retention:
People with EDS seem to hold fluid and around the menstruation period it gets worse.
Endometriosis:
Endometriosis is very common in EDS.
Poly-cystic Ovary Syndrome:
PCOS is a very common condition in EDS as well
More Dislocations:
The hormone that makes you flexible is released at this time and people with EDS have more dislocations around this time.
More Pain:
The pain increases as well
Irregular Periods:
People with EDS have very irregular periods. I will bleed for 5 weeks and then stop for 3 days and it starts again
Blood Pressure Changes:
In patients with EDS and POTS the blood pressure tends to go down.
Fainting:
Because of the change in blood pressure people with EDS and POTS faint more.
Muscle Weakness:
When you are more flexible the muscles get weaker so around this time EDS patients are even weaker.
More prone to infections:
For some reason around this time our immune systems are worse and we get a lot of infections.
Dehydration:
We tend to get more dehydrated around this time so we have to keep up with our fluids.
Migraines:
We tend to get migraines around this time. It can be much worse than usual
Brain Fog:
It can be extremely hard for us to concentrate on anything. It is like the lights are on but no body is home.
Intolerance to Heat:
Our heat intolerance can get worse. So periods and summer do not go well together.
Cold Hands and Feet:
Our hands and feet can be feet can be freezing while we are hot. This is a weird thing that I don't understand.
Anemia:
Anemia is caused by us bleeding so heavily and loosing so much blood and iron. This can make us very sick.
Muscle Spasms:
Our Muscle Spasms can get a lot worse. These can be very painful.
Itching all over:
Our skin can be very itchy- I am again unsure why.
Skin Sensitivity:
Our skin can be more sensitive it can hurt more and split easily.
Hip Dislocations more severe and increased:
The hip dislocations get worse with the flexiblity.
I hope this helps.
Hugs,
Rachael
Thank you so much for sharing this! I was diagnosed with EDS a year ago but my doctor is very unfamiliar with the syndrome so much of this I've had to find on my own! Much appreciated!!
ReplyDeleteI just have to say thank you for posting this because I had not connected the dots that every time I have my horrifically bad periods, my hips and back got hurt, but this all makes sense now. I'm lucky in that I'm an athlete who is still able to do her thing, but at least once a month I was getting injured and now I know why and know to take that time off in the future.
ReplyDeleteI know this is an old post but wanted to comment at least what I know. I too have eds and have had horrible periods since the first one. I am now 28 and have recently discovered through reading on the internet that some vitamins can help with cramps. This is for anyone, not just eds'ers. I have been taking vitamins c, e, and d for five months now and have seen quite a bit of improvement in my cramps. The first month of taking wasn't much of a change but by the second and third month was when i could really tell I wasn't hurting as bad. Don't get me wrong though, its not a cure. I still have at times bad cramps but not the double over, feeling sick because I'm hurting so bad cramps. As far as the dislocations because of the hormones, I've been told hormonal birth control can make that much worse but I don't know from experience because I've never taken hormonal birth control. Hope this helps someone.
ReplyDeleteI know this is an old post but wanted to comment at least what I know. I too have eds and have had horrible periods since the first one. I am now 28 and have recently discovered through reading on the internet that some vitamins can help with cramps. This is for anyone, not just eds'ers. I have been taking vitamins c, e, and d for five months now and have seen quite a bit of improvement in my cramps. The first month of taking wasn't much of a change but by the second and third month was when i could really tell I wasn't hurting as bad. Don't get me wrong though, its not a cure. I still have at times bad cramps but not the double over, feeling sick because I'm hurting so bad cramps. As far as the dislocations because of the hormones, I've been told hormonal birth control can make that much worse but I don't know from experience because I've never taken hormonal birth control. Hope this helps someone.
ReplyDeleteMast cell activation disorders, look into it if you haven't already. And POTS, Postural Orthostatic Tachycardia Syndrome. Also look into methylation problems with B Vitamins. May help some people. Good luck. It ain't easy!
ReplyDeleteThank you so much for this! I have yet to be formally diagnosed with EDS but it is highly suspected. I have been diagnosed with polycystic ovarian syndrome and recently with diabetes. I have nearly all of these issues! The pain from menstruation radiates through my back and is excrutiating when i move. I just wanna lay in bed all the time. I have always had these issues so I didn't know it could be part of the EDS...
ReplyDeleteThank you for some other informative blog. Where else could I get that type of information written in such an ideal means? I have a mission that I’m just now working on, and I have been at the look out for such information.does eating a lemon stop your period
ReplyDelete