Hi all. I have been concerned about something. I know that my fiance is trying to support me but sometimes he frustrates me so bad. I have fibromyalgia and hypermobility syndrome. I am being send to the genticist for a dx of HEDS, which my doctor thinks I have. While my fiance is a wonderful, wonderful man and tries hard to understand, I sometimes get so incredibly frustrated. Let me explain.

He thinks that when I say I will probably be in a wheelchair by 40 I'm trying to create a self-fulfilling prophesy. He thinks that my fibro is my main reason for hurting and that I just have flares which I suffer from. Some days I can't walk! He says that the only reason people with hypermobility/HEDS end up in a wheelchair is from their joints being unstable not because of pain. I realize that is one of the reasons, but my pain is sometimes a 10 on a 1 to 10 scale. The other day I couldn't walk and he had to hold on to me and I had to put my other hand against the wall because I was in a lot of pain and my knees kept buckling under me. I cried and cried I was in so much pain. That was last Thursday and this is Saturday. That was just 2 days ago!

I just started realizing a lot of my pain is from dislocations and subluxations (I didn't know much about them before) and I am learning how to put some joints back in place. I think that he doesn't understand that this is what I've been dealing with all my life, even before I knew what this was. I'm frustrated. My hip and shoulder joints are very, very loose and my shoulder constantly subluxate and dislocate often. Apparently what I've been doing to make my hips feel better since a teenager is actually putting my hips back into place, I just didn't know what it was.

I'm in water therapy because the Pt said that my joints were too loose and my level of pain too high for regular therapy. My fiance seems to think that WT is going to make it all better, or at least that is what I feel like he is saying.

I feel frustrated because I know he is trying. I am so sensitive no matter how hard I try not to cry I always end up crying when we discuss it.

Anyone have some words of wisdom?

It's hard for people without chronic pain, to really understand chronic pain, when people ask me how much it hurts, I ask them if they've ever broken something, and if they say yes, I say, "I once fell due to a dislocating hip, dislocated the shoulder I landed on, and broke my arm in 2 places. My day to day pain is so severe, I didn't even realize I broke my arm until 3 weeks later.

And while water therapy may not be the be all end all of pain and suffering. But in my personal experience, therapy to strengthen certain supportive muscle groups, has gone a long way in helping me relieve pain, mostly from sitting positions, before therapy, I was in constant pain, even when sitting or laying down, now the pain I feel while sitting is pretty minimal, compared to what it used to be, and that's just from strengthening a few key muscle groups to hold me in place while I'm not doing anything.

I've understood that eds'ers have chronic pain since i've met them here on the boards. I've heard about the amount and strong pain meds they take. But I never experienced it until I visited one of the first eds spoonies I met here on the boards about a month ago. Her pain was palpable. I could feel it just by looking in her eyes. It broke my heart.

Take your fiance to teh doc appt with you. try to help him understand. he'll get it eventaully. The good ones do.

linda

HUGS!
HMS/EDS is a difficult to understand beast- we sufferers find it hard to 'get it' at times- for those around us...it is v v v hard to 'get it'... be patient with your fiance.

re wheelchair- fiance is wrong-sometimes HMS/EDS peops are in a wheelchair due to the pain and/or crushing fatigue- as the wheelchair can be a v helpful spoon saver- but it can also be 'dangerous' in that situation, as you need to make sure you do work your muscles enough or subluxes and dislocations can increase (muscles instead of ligaments are what keep our joints in place)

"self fullfilling prophesy"(probably in wheel chair by 40)- I wouldnt put it as harsh as this- but I feel fiancee is just trying to keep you on an optimistic level- and optimism is indeed a v helpful tool to try and deal with this condition.

thinking 'probably in a ....'- might make you give up the fight (keepin up with exercises, learning to pace yourself, finding the right aids, pain management, life style changes etc etc etc) easier than thinking "there is an equally big chance that I will/wont be in a wheel chair at 40- I will do everything I can to try to avoid it"

and even if you need to use a wheel chair at some point- there is also a chance of getting out of it again!!!- I do know peops who have managed just that!

no one can foretell what HMS/EDS will do to you... and yes some people will need a wheel chair, but ime many many more wont ever- or at least not forever/or only occasionally.
so keep up the hope that you will be one of the luckier ones- and keep up the hard work of trying to be the fittest you can be!

I know it seems sooooo impossible at times- but things can improve-
I was diagnosed when pain and exhaustion meant I could barely do anything-
and yep I often even 'yearned' for a spoon saving wheel chair then- but now years later- I once again can do sooooooo many things again that then I didnt even dare dream about.
hugs
xxg

Thanks so much gila! What you said made perfect sense to me, plus I'm not annoyed by what my fiance said anymore. Like you said, sometimes I'm still trying to understand what is happening to my body! The wheelchair thing makes sense and you're right (and so is my fiance) that I need to have hope and determination to do the best I can - whatever that is. Thank you so much for your reply, it just seemed to hit all the right points perfectly.

and thanks for making me feel 'useful'
and be prepared for many more "arrgghhh-he just doesnt get it MOMENTS"- my bf of some 13 yrs generally does really get it and is lovely and helpful but every now and then... he comes out with a whopper

but I think we humans are made 'to forget bad things'- that's why peops have such a hard time understanding chronic problems and their full impact- and that's why peops who do 'get it' still have 'whopper moments'-
and that's why we, again and again, need to 'rant':evil: about them
xxg