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[Peri-wrecked]

Hi all,
Just wondering if there are any fellow Ehlers Danlos Syndrome sufferers out there currently going through peri?
I must say I didnt really suffer with my EDS until I came off birth control, which makes me wonder if all my symptoms are hormonal or mixed as depletion of estrogen effects EDS.
 I will say that my periods are very light and I usually start my period in the evening and its all over the next evening except for some light brown spotting. I had hormones tested last year and they showed low progesterone compared to estrogen.  Doctors have suggested anxiety meds but my thing is that my symptoms appeared first then the anxiety. Its a very confusing mess. My own gp is great but he doesnt know where to send me as there are no EDS experts in ireland and I just get my symptoms looked at individually rather than together which I gather happens to quite a lot of menopausal women also.
  I'm currently trialling a low dose birth control. I'm on my second packet. I have about 5 days to go before I take my weak break. My energy has improved, my heart palps have changed to almost constant flutters in chest with a feeling of air in chest.  My joint pain improved slightly. Hot flushes have calmed although I do get freezing cold. I wear about 5 layers on top to work and I'm still cold.
My skin is so dry which is so opposite for me as I've alwayd had oily acne prone skin.  My hands are dry and peel and my nails are breaking into my nail beds which is very painful.
I used to get severe tremors last year but they are down to mild shakesand jellylegs occasionally usually before period. I've also experienced dizziness before my periods as well.
I suffer with gerd/acid reflux and post nasal drip. If I was to go by what all the consultants suggest then I could end up on about 10+medications , my gut tells .e that the majority could be helped by hormone replacement. I forgot I was also told I have CFS but I noticed my energy is improving since starting the low dose of birth control. My mood is low too which probably affects my energy.  Also started to suffer headaches. Never had much of those before.

Just wondered if any fellow peri or EDS suffers can offer suggestions. Or can relate. When this started, I sufferrf chest pains and tingling in extremities as well. Such an array of sudden symptoms. I might add I was at my happiest ever in life when this all started. I was confident, felt vibrant and just great when this hit me. I just miss that person so much.

Thank you very much.

[CLKD]

If you do a search as I did you will see other threads about EDS.

As oestrogen levels drop the body may become dry: deep in the ears, nostrils, eyes, skin, vagina - for me it's the insteps on both feet as I step into the bath.  Or over-all last week like I had a mouse running over my skin  . 

We use Vaseline hand/body lotion on legs, arms, body. Little and often. I use Savlon when the skin breaks down, putting lots into the areas that have cracked.  Every day even when it's healed. 

Are you hydrated?  Lack of liquids in the body can cause headaches.

I use over the counter Rennies - two tablets chewed as soon as symptoms begin or as today, when I can feel it, prior to eating.  I have in the night woken with reflux and pains all around my chest and between the sternum and have had to chew 3 within an hour to ease symptoms as well as sitting up.  AWFUL!

[Peri-wrecked]

Thank you. I will run a search again. Thank you for the tips, I have the rennie and will try those again.  I currently use E45 ,lotion all over but I still get thw feeling of insects running all over me.
Thanks for the advise.

[Conolly]

Hello Peri-wrecked,


I am a fellow EDS sufferer. I'm sorry you're struggling with so many symptoms, I can sympathise. I've been on and off the same ones for the last 7 years whilst in perimenopause., but some of them were present before that, so they might be related to EDS.

I'm not at home (working overseas) and won't be able to type a lengthy post on iPhone right now, but I'll do it later on or maybe we could chat via PMs?

What type of EDS do you have? 

Hopefully you will find some useful information on here.


Conolly X

[CLKD]

   Girls!