The (not so old) Crocks Cafe -Part 2

hannahO_2

Hi bigzippy,
I agree with you. I think there are a lot of overlaps and some hybrid cases. I WAS hoping for one magic pill but I realise it's not going to happen.

Funny, I am like you...I want to get to the bottom of it because something is wrong. Why so many symptoms are pointing towards the direction of lupus, FM, hypermobility but not lung cancer or kidney disease or whatever.... and uncanny similarity in delayed diagnosis as well as how you guys were treated by dr *ahem* politely nudged.

By the way, I want to ask if anyone can do this (see the 2nd photo) with their fingers. I thought everyone can do this but it looks like this is a sign of hypermobility. When I saw this photo, it brought back my childhood memory because my brother and I used to do this as well as thumb on the wrist (one of Beighton Score test). Someone I knew was very bendy too

Also another question, when they say "Passively touch the forearm with the thumb, while flexing the wrist.", does that mean you have to do it unassisted by the other hand to hold it :eek: I can bend it but I have to push it with the other hand. I think it's impossible to replicate the photo above without an assistance by the other hand too.....

Trialia

hannahO wrote: »

By the way, I want to ask if anyone can do this (see the 2nd photo) with their fingers. I thought everyone can do this but it looks like this is a sign of hypermobility. When I saw this photo, it brought back my childhood memory because my brother and I used to do this as well as thumb on the wrist (one of Beighton Score test). Someone I knew was very bendy too

Also another question, when they say "Passively touch the forearm with the thumb, while flexing the wrist.", does that mean you have to do it unassisted by the other hand to hold it :eek: I can bend it but I have to push it with the other hand. I think it's impossible to replicate the photo above without an assistance by the other hand too.....

I can do that. Not with all my fingers, but most.

Yes, it means unassisted. That's the one part of the Beighton score that I fail on - I fit all the others and a few that aren't on the list, heh.

needing-help

Hi everyone.
Not posted for a while I have been having a run of not feeling too bad and it didn't seem fair to post when others are suffering.
Don't worry though I'm back being a (not so old) crock again:(
Still struggling to accept it though, the house is still a mess and thats one of the things that gets ro me most.

Jojo that is great news about your house, I really hope things work out for you.

SingleSue

I could do that with all fingers on both hands, plus the thumb on one hand, the right angle wrists etc (plus could pull my big toes up to a 90 degree angle, do the splits, bend my back further than looks good, spoon my hands, go right over on my ankles)....I scored 8/9 when I was not suffering from arthritis.

Now with the arthritis, my right hand has stiffened up so can no longer wrap one finger over another as much as I used to be able to (although they do still wrap), can touch the floor with the back of my hands but then get stuck and have to be pulled up, my knees and elbows still bend weirdly, the thumb trick is no longer possible, can't do the splits anymore (and if I try, I get locked into position and have to be pulled out which is extremely painful and the back is pretty perm locked in a weird position....the big toes I can still do to weird people out but they also dislocate pretty easily now.

Oh, and if I do try all the things that I can do, I pay for it later.

Eldest with diagnosed HEDS scored 7/9...he couldn't put his flat hands to the floor and could only do one thumb.

hannahO_2

@Trialia
Then my score could be down to 2/9. You never see *unassisted* thumb to the wrist photo, do you?

@needing-help
I'm sorry to hear you are not feeling too good.
My house is still a mess too...forever and I am coming to term with lots of things. It'll be alright, it's ok.

@Jojo
It's today, isn't it? I am so excited for you.
Looking forward to your house viewing report!

formaldehyde_perfume

I feel so alone.

The changing from HMS to EDS thing has really messed me up. I'm worried about my application for benefits, I'm worried about .. well... everything. It's all spinning round in my head and I don't know how to stop it. *sigh*

LameWolf

bigzippy wrote: »

P.s. Lamewolf can you believe it's been a whole year now since my wedding day?! :shocked:

Yep, I believe it!! I'd meant to send you a pm, but it totally slipped my mind, as I've been knee-deep in dogs for a couple of weeks, and am now totally knackerooed!:D I hope you and DH had a good day, and managed some sort of celebration.:o

Jojo assuming you weren't hallucinating, lets hope the new place is all you've ever wished for.

Formaldehyde yeah, I know the "everything spinning round in the head" feeling. Sorry you're feeling alone, wish there was something I could do to help.

Oh yeah, I can do quite a bit of the hypermobility stuff; but once there, I have a hell of a job to get the joints back to normal.

Trialia

formaldehyde_perfume wrote: »

The changing from HMS to EDS thing has really messed me up. I'm worried about my application for benefits, I'm worried about .. well... everything. It's all spinning round in my head and I don't know how to stop it. *sigh*

HMS and hypermobility EDS are essentially the same thing; the only real difference I can see is that the doctors - and ATOS, wonder of wonders - actually listen more when you have EDS on your chart than when you have HMS, because the DLA assessment handbook says HMS can be so mild as to be almost irrelevant, but EDS, not so much.

I understand the worry about the application forms. They're so humiliating to fill in, everything you can't do any longer. I never update mine before reassessment time because it's nearly always a change for the worse in me and I cannot face filling out the DLA forms more often than I'm already made to do.

Good luck.

formaldehyde_perfume

Trialia wrote: »

HMS and hypermobility EDS are essentially the same thing; the only real difference I can see is that the doctors - and ATOS, wonder of wonders - actually listen more when you have EDS on your chart than when you have HMS, because the DLA assessment handbook says HMS can be so mild as to be almost irrelevant, but EDS, not so much.

I understand the worry about the application forms. They're so humiliating to fill in, everything you can't do any longer. I never update mine before reassessment time because it's nearly always a change for the worse in me and I cannot face filling out the DLA forms more often than I'm already made to do.

Good luck.

Thanks

I just applied for ESA yesterday and my regional HMSA person said to ring and change it to EDS but my off-work medical certifical says the reason is hypermobility, so does all my back up evidence for my DLA claim so I don't know what the hell to do. It's all so confusing I want to cry.:(

bigzippy

hannahO wrote: »

Hi bigzippy,
I agree with you. I think there are a lot of overlaps and some hybrid cases. I WAS hoping for one magic pill but I realise it's not going to happen.

Funny, I am like you...I want to get to the bottom of it because something is wrong. Why so many symptoms are pointing towards the direction of lupus, FM, hypermobility but not lung cancer or kidney disease or whatever.... and uncanny similarity in delayed diagnosis as well as how you guys were treated by dr *ahem* politely nudged.

Yeah I can't stand having a symptom that's unexplained - esp when there's not a specific test for ME/CFS/Fibro and it often makes me worry that they've missed something more severe.:o As for the magic pill, sorry that really doesn't exist :cool: I have 2 for the CFS/Fibro, then one to offset the side effects from that, then an antihistamine, and the pill for the horrendous periods, and then all the IBS, eczema, asthma and pain meds...and I still feel I'm missing something!

I can do the hand thing (or at least can on a non-seized day). I'm not sure about the unassisted do-dah. I got 7/9 on the Beighton Scale, losing the 2 points for my elbows not being quite as gruesome I very definitely used my other hand to touch my thumb to my wrist, and got the 2 points for that, if that helps. I was the same - I didn't realise that "normal" people couldn't do it.

As for delayed dx - they have to wait at least 6months before dxing CFS, it's in their little rule book, but it's usually more like 18months tbh. And of course it depends what your activity levels and such were before, as if your decline is pretty gradual it's harder to pick up on a specific set of symptoms.

needing-help wrote: »

Hi everyone.
Not posted for a while I have been having a run of not feeling too bad and it didn't seem fair to post when others are suffering.
Don't worry though I'm back being a (not so old) crock again:(
Still struggling to accept it though, the house is still a mess and thats one of the things that gets ro me most.

NH, we do like the rays of sunshine of people feeling a bit better too y'know It makes (at least me) it seem possible to have good days as well as the carp And as for the house...well, say no more!:o Then again, I know "perfectly healthy" people who have their houses far messier and worse than I bet any of ours are!;)

LameWolf wrote: »

Yep, I believe it!! I'd meant to send you a pm, but it totally slipped my mind, as I've been knee-deep in dogs for a couple of weeks, and am now totally knackerooed!:D I hope you and DH had a good day, and managed some sort of celebration.:o

Don't worry, I have been a bit absent about these parts anyway so I wasn't expecting you to remember. My laptop broke, then pcl lent me one and that died...and MIL now has a sheltered accom flat that she's moving into on Sat, and the house is on the market, so I've been either unable to get online technology-wise or just too busy
DH ended up popping to the hotel (that he works at) to get 2 plates of carvery with all the trimmings, and 2 slabs of choc fudge cake, to bring home for tea! We couldn't be bothered cooking, and didn't want "ordinary" takeaway, and couldn't be bothered to go out, so it was the perfect compromise! We bought a DVD to watch too, The Book of Eli - which we thought was really good

Jojo I hope the viewing/applying/moving process is going well and that you're just busy with that and that's why you're quiet

Formaldehyde, can you get some nice person to help you with the forms? CAB or DIAL or Welfare Rights?