I fell between 15 and 20 times yesterday. (and 4 times today already, several the day before yesterday, a few on Tuesday, and twice last Friday)
Why?
Because my hips and knees are SOOOO loose that the twitch/spasm/tremors are causing me to lose my balance and dislocate them.
I'll be standing, when I'm suddenly attacked by LOTS OF SHAKING (like it's my own personal earthquake) and BAM! there goes my knee(s) and/or hip(s).
I fall quite gracefully.
Really... I fell so many times, and it mostly went completely unnoticed. I am a master of landing.
The upside? I now have some sort of connection for my bad days with twitching. They correlate completely with my awful days for joint laxity; which in turn seem to be affected by my hormones, which is absolutely fun! I get to bleed, be crampy, bloaty, cranky, irritable, SORE, dislocatey and twitchy at EXACTLY THE SAME TIME.
I also found out yesterday that my cousin has a brain tumour, and she went for a biopsy yesterday to check if it's cancerous or not. It's in an inoperable part of her brain. So lots of anxiety and waiting there, too.
In times like these, I really just want to curl up and watch a 'fluffy' movie. One with a nice, pleasant story, and a lovely happy ending. With kittens, or something. Whilst eating a bowl of chocolate ice cream...
Remembering Michael Lennick
1 week ago
5 comments:
I'm always more dislocatey, as you put it so well, during my time of the month. I've read that the body releases hormones that are meant to relax the connective tissues of the body--Relaxin for example. Which is real fun stuff for people like us. Are you on any kind of birth control pill that contains progesterone? That's supposed to make it worse. Feel better!
My body does the same thing when the hormones are crazy. Well, I don't fall as of yet, but I get the twitches and the hips/knees/ankles collapsing going on. That's also usually when I have the most dislocations, and swallowing issues from dysphagia.
Keep your chin up!!!
Saurou,
No birth control for me. It used to be that the worst time of my month was when I was ovulating. This month it's not. I was feeling kind of more loose during ovulation, but now I'm bad enough that my mom has told me to get my passport in order so she can fly me to the Mayo clinic to get me checked out. I scared her so badly today that she broke down in tears... twice.
Nicole,
I was told by an ear, nose and throat specialist that I had the worst swallowing muscle tone he'd seen... At that time it was due to just having my tonsils out (they were the size of walnuts!). Since then, and having to relearn how to swallow, I've paid more attention to it. I have days where I very nearly choke because my throat just won't swallow. I also occasionally have speach issues, but neither of those seem to be related to my other laxity issues.
Thanks for the comments!
I am so sorry to hear of the bad health news of your relation. This must be very stressful for all.
Working on core stabilising muscles can help with falling, sort of strengthening from the inside out. I am sure though you know this already!
Your poor mum it must be very distressing for her. Over here in the UK when patients attend multi disciplinary pain management courses incorporating physical rehabilitation also relatives are invited to attend to help them have coping strategies to help them deal with the strain of caring. They have the opportunity to attend with the patient and alone (so they can talk about stuff which they may not feel comfortable mentioning with their loved one present) with the clinical psychotherapist along with other team members so that they can discuss issues arising from dealing with the everyday strain experienced with living with someone with a long term medical condition.
On very bad twitching days I really up my hydration levels a simple but sometimes effective trick to the brain to stop it from losing concentration for the moment just before it lets the body fall down. Obviously doesn't always work.
I also attended a one to one course run by what over here is called an occupational therapist which was pretty intensive but was based on injury prevention primarily introduced for sufferors of osteoporosis (which I do have also low bone density being a by product it seems of my EDS) The course was really helpful as it really helped to identify potential triggers to falling even from simple things as the way one turns in a step using a method of circles rather than the normal way one approaches simple manouveres. Not very well described but the course was very helpful. Particularly with teaching ways to improve on the poor proprioception that many with EDS have which can trigger falls on occasion. Even simple techniques as planning a manouvere in one's mind the split second before one makes it can help, sort of letting the brain know the body is about to do something with a mini plan of action incorporated can help minimise falls. It sounds silly but it was helpful.
I can't remember if you have ever tried a prolonged course of hydrotherapy to improve muscle tone at all often here it is used as a pre-cursor to physical therapy.
I hope when bendy week is over things improve for you.
I also (brain fug am afraid) cannot remember if they have found either a physical/neurological reason for your twitching that is separate at all from your EDS diagnosis? Please excuse my mushy memory.
Here also poor muscle/swallowing issues may be treated by a speech therapist who can offer assistance,advice and exercises to help with dysphagia and associated EDS issues.
I hope your poor mum isn't resorted to tears twice in one day tomorrow, which means by default you will be having a better day also.
Achelois,
Thanks for your advice.
I've never tried hydrotherapy, and I've yet to find a physical therapist that knows anything about EDS.
As for the diagnosis, I'm waiting for an appointment with a neurologist in NOVEMBER to see if I have a neurological issue. My PCP ran out of ideas for a diagnosis, and he ran out of blood tests he could think to give me.
I may be going out of country so I can get a diagnosis sooner.
And just for clarification, I work with my mom, so I see her monday to friday, but I live with my hubby.
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