Hello all warriors 🦓🦓🦓,
I’m michelle, hoping to make some friends on here who understand.....
I’m 48, single (too knackered or in pain to think about dating) and have one beautiful 21 year old daughter.
I was double jointed as a child always sat in weird positions on the floor (weird to others, comfortable to me). Became a gymnast and entered a few competitions. Never had any pain but was always tired. Also always felt nausea and terrible car/motion sickness.
Developed TMJ as a child and was always getting jaw lock. Once it locked and I could only open it about 2cms. This went on for months went to Dentist hospital and eventually it resolved but it still is out of joint now and clicks every time I eat. Fell over as a teenager and ended up in hospital for a week (not quite sure what happened to my knee but dr told me I had housemaids knee which was strange as I was only about 17).
Got pregnant at 28 had terrible morning sickness that lasted all day every day for the full 9 months.
Gave birth to my daughter and developed post natal depression (never suffered with depression before).
Anyway fast forward to me turning 40, I became very exhausted, the least thing would result in me having to lie down for at least an hour to recover I also developed POTS. I was in pain daily and was diagnosed with fibromyalgia in 2015.
In 2016 I needed a surgery to have my gallbladder removed the day after the surgery the surgeon told me I had adhesions everything inside was stuck together and he told me my connective tissue especially my collagen was very fragile and I had a bleed during the operation due to weak blood vessels and after surgery I had a Hematoma. He called me a zebra which I didn’t understand at the time. He advised against any future medical procedures due to my fragile tissue.
The last 5 years have been very hard. Exhausted every day, gave up work. Pain day in day out. Every joint pops and clicks, muscles spasm and twitch. I have loads of allergies and food intolerances. Definitely have histamine problems.
Now it is all coming together. I’m waiting to see a rheumatologist to discuss hyper mobile EDS. It runs in my family.
My questions are......
What do fellow EDS warriors find helps with pain. I’d rather not go down the medication route because I’m sensitive to so may drugs with lots of allergic reactions. I find I have to keep moving no matter how much it hurts as lying in bed or doing nothing I cease up and the pain is even worse. Heat helps (hot water bottles, saunas, the sun).
What do people do to help sleep? This is a big one for me. I have insomnia and I can never find a comfortable position to sleep. My shoulders are really painful and click every-time I move them so lying on my side hurts. I have bone spurs in my neck and stenosis so it’s hard to find a comfortable position for my neck. I manage to sleep for an hour or two but then need to move position as I’ve ceased up. I also have sleep apnea which wakes me up a lot. Sleep (or lack of it is a big thing at the minute).
IBS/digestion problems is a huge problem I won’t go into the ins and outs but let’s just say I’m forever on the loo. Bladder is very sensitive too and can’t seem to hold much urine before I need to dash to the loo. Life is pretty miserable but I’ve accepted now this is my new normal and I just have to find ways to cope the best I can with everything and try to stay as positive as I can.
Love to hear your stories and find what works for you. Please get in touch, be nice to know I’m not alone 🤗