The (not so old) Crocks Cafe -Part 2

Trialia

needing-help wrote: »

I'm sorry I didn't mean to offend, I don't pity you it was just something I knew nothing about. Believe me I know all about the pity thing. I walk with a cane now and have 3 young children i feel like a freak show sometimes.

Are hypermobility and and fibro linked then, there seem to be a lot of people on here with both.

Apologies if I'm being too nosey/personal feel free to tell me to shut up:o

Oh, no, don't worry, you didn't offend me. I know the difference between sympathy and pity

Fibromyalgia is frequently secondary to hypermobility syndrome and/or hypermobility Ehlers-Danlos syndrome (though a fair few experts say the last two are the same thing and as far as I'm concerned, they are - my dad has the skin symptoms that go with HEDS but less joint instability (thanks to his RA, double-edged sword), I have less skin symptoms but more joint instability). It's mostly because the constant physical damage and trauma caused by HEDS/HMS has a sort of transferring effect - the pain of a dislocation stays for a good while and the pain passes on into the surrounding tissues because the dislocations, full and partial, damage them, and so that continuing trauma can set off FM. It doesn't with everyone, but most of the people I know with HMS/HEDS have secondary fibromyalgia.

FP - *points up in post* there are several experts in the field, including Dr. Francomano, who are very definite about hypermobility EDS and hypermobility syndrome being simply varying degrees of the same thing. In my family, the pattern of affected relatives, and how we are individually affected, makes that relationship very clear.

juno

sh1305 wrote: »

What doesn't help with me, is the fact that I'm the only person in the family with these conditions, 2 are side effects and are somewhat rare.

My sister has a back problem, and hers was bad and has stayed bad. My arthritis has progressively got worse and also has flare ups so sometimes it's ok and others it's awful. At the moment I've had a flare up for 3 weeks and it's the worst I've had.

But because my sister was ill first my family think she's worst and I'm just making it up.

formaldehyde_perfume

Trialia wrote: »

FP - *points up in post* there are several experts in the field, including Dr. Francomano, who are very definite about hypermobility EDS and hypermobility syndrome being simply varying degrees of the same thing. In my family, the pattern of affected relatives, and how we are individually affected, makes that relationship very clear.

!!!!!!. I wish they'd just make up their damn minds and stick with it (yes I know this is a silly comment but please just let me vent) I have enough trouble trying to explain it to other people let alone read up on the new stuff myself. Dr M at UCLH told me it definitely wasn't EDS, so I assumed that something I'd read about specialists now thinking they were the same thing was wrong and they were separate. I think I'll just give up.

formaldehyde_perfume

juno wrote: »

My sister has a back problem, and hers was bad and has stayed bad. My arthritis has progressively got worse and also has flare ups so sometimes it's ok and others it's awful. At the moment I've had a flare up for 3 weeks and it's the worst I've had.

But because my sister was ill first my family think she's worst and I'm just making it up.

That's awful I'm so sorry that you have to deal with that too. I'm lucky that I have my mum who backs me up 100% and has never questioned my symptoms or deterioration.

juno

formaldehyde_perfume wrote: »

That's awful I'm so sorry that you have to deal with that too. I'm lucky that I have my mum who backs me up 100% and has never questioned my symptoms or deterioration.

He also doesn't understand that I sometimes need to have a rest when doing things - like if I'm hoovering I can do one room but really can't do more.

And he hates me having my blanket in the lounge. We have a leather sofa and I hate the feel of it against my skin so sometimes I'll sit on my blanket, or use it for blanket purposes if I get cold (which makes far more sense to me than heating the whole house), or use it like a cushion if I need propping up. But I am not allowed to keep blanket where people can see it.

In case you're wondering, it's plain pink - well it has a wavy type pattern from the way the fabric is made - rather than anything offensive.

formaldehyde_perfume

juno wrote: »

He also doesn't understand that I sometimes need to have a rest when doing things - like if I'm hoovering I can do one room but really can't do more.

And he hates me having my blanket in the lounge. We have a leather sofa and I hate the feel of it against my skin so sometimes I'll sit on my blanket, or use it for blanket purposes if I get cold (which makes far more sense to me than heating the whole house), or use it like a cushion if I need propping up. But I am not allowed to keep blanket where people can see it.

In case you're wondering, it's plain pink - well it has a wavy type pattern from the way the fabric is made - rather than anything offensive.

I have one exactly for those kinds of things! My dad wouldn't dare tell me off for something like that, even though I know he doesn't like it, because he knows I'd tell him how stupid he was being.

He went nuts when the every day plates and bowls set was replaced, !!!!!! it was only a (chipped from the dishwasher!) £20 set you could get anywhere, and that's what replaced it, what's the big deal?

Have you asked him why he won't let you have the blanket? If it's possible to have a calm conversation with him I would suggest doing that. It's really quite silly.

Indie_Kid

juno wrote: »

My sister has a back problem, and hers was bad and has stayed bad. My arthritis has progressively got worse and also has flare ups so sometimes it's ok and others it's awful. At the moment I've had a flare up for 3 weeks and it's the worst I've had.

But because my sister was ill first my family think she's worst and I'm just making it up.

That's really sad. I'm lucky (if you can call it that!) - in my family, some of them have various disabilities and whilst the disabilities are different, (Until my mum mete her half-sister a few years ago, I was the only know person in the family with eye problems) they do understand smewhat. Whereas some people don't understand at all, can't see my disabilities (you can if you look very closely at my eyes - some people have said it's not that obvious) and assume I'm faking.

I got my memory foam mattress topper last night and had a wonderful nights' sleep.

SingleSue

Trialia wrote: »

Oh, no, don't worry, you didn't offend me. I know the difference between sympathy and pity

Fibromyalgia is frequently secondary to hypermobility syndrome and/or hypermobility Ehlers-Danlos syndrome (though a fair few experts say the last two are the same thing and as far as I'm concerned, they are - my dad has the skin symptoms that go with HEDS but less joint instability (thanks to his RA, double-edged sword), I have less skin symptoms but more joint instability). It's mostly because the constant physical damage and trauma caused by HEDS/HMS has a sort of transferring effect - the pain of a dislocation stays for a good while and the pain passes on into the surrounding tissues because the dislocations, full and partial, damage them, and so that continuing trauma can set off FM. It doesn't with everyone, but most of the people I know with HMS/HEDS have secondary fibromyalgia.

FP - *points up in post* there are several experts in the field, including Dr. Francomano, who are very definite about hypermobility EDS and hypermobility syndrome being simply varying degrees of the same thing. In my family, the pattern of affected relatives, and how we are individually affected, makes that relationship very clear.

It is a confusing relationship isn't it? Youngest has been classed as having HMS since he was very young, I was just hypermobile (although I have had lots of problems and pain since I was pre teen) and eldest up until a year ago, was just plain making it up or having growing pains according to the GP.

Now eldest has an EDS diagnosis with multiple unstable joints, some minor cardiac involvement and major skin involvement (he loves grossing people out with his ultra stretchy skin and weird and wonderful stretch marks for no reason in weird places).

And they think middle son who has never been very hypermobile (only his fingers - he can take them in and out of joint just by gently pulling on them) has got it too because of his fingers, easy bruising, (very) slow healing (it took 16 weeks for the mark from a drip to go) and bowel problems. Middle son had been investigated when he was around 6 for a bleeding disorder because he bruised so easily and it took so long for things to heal but everything was deemed to be ok, low side of normal but ok.

Weirdest one is youngest, they are not so concerned about EDS despite his early diagnosis of HMS, multiple joint flexibility but his fingers are less mobile than either mine or his brothers. He also has slow healing and the weird scars, stretchmarks and bowel problems...but still they are not concerned that he has it.

Me? Goodness knows! I don't have ultra stretchy skin, I don't bruise that easily, healing is pretty quick but I have multiple unstable joints, bowel problems and now, widespread arthritis (got the first arthritis diagnosis in my late teens).

My parents are very understanding about the pain I experience and are supportive (they paid for us to have a meal out instead of me attempting to cook when it was really bad on holiday) but my brother thinks I use it as an excuse.

My ex mother in law thinks sticks are for old people.

needing-help

Thank you all for explaining things too me and Trialia I'm glad I didn't offend you.

I do get what you mean about people not understanding my problems started 6 months ago some people just don't understand that I will never be the person I was before and my mum loves the idea of a disabled daughter so she can talk about me but when it comes to practical help I never see her. My dh is brilliant though as are my closest friends.

Sorry for that turning into a rant I have had a bad day today, my balance and co ordination have been terrible and the pain has been awful.:(

Hope everyone is ok and sending hugs all round. x

Trialia

*waves to everyone* Okay, so I'm off, with a plentiful supply of sugary snacks and strong painkillers, to the Discworld Convention as of Friday morning. My friend Kalina is arriving from Sofia tomorrow morning. So y'all won't see me around for about the next week, but I'll be fine, just in case anyone were to get worried!

Convention winds up with the Dead Monkey Party (don't ask ) on Monday night, I'm staying in the hotel (yep, I saved up for a good while for this!) through Tuesday and will be recovering most of Wednesday along with seeing the previously-mentioned new physio that day, so, yeah, it'll be about a week.

Don't have any nasty accidents, people! *hugs you all*