The (not so old) Crocks Cafe -Part 2

formaldehyde_perfume

Timmy has just come in from his walk and is running round like a loooooooney tune... and eeew he just jumped all over me and now i'm all wet and covered in grit.

Ah the joys of owning a dog hey.

saschasmum, don't worry about it. I have noticed things becoming quite catty recently but I think it has something to do with the spending review and half term.

I too am also too nosey to use the ignore button too

Trialia

formaldehyde_perfume wrote: »

saschasmum, don't worry about it. I have noticed things becoming quite catty recently but I think it has something to do with the spending review and half term.

I too am also too nosey to use the ignore button too

I'll be honest, it makes me roll my eyes to see people thinking I have "taken [them] off ignore"... when I actually haven't. Nor do I need to, because people quote the posts in question, quite apart from anything else, and that function doesn't work on those quoted sections.

Actually, I wonder if there's an add-on I could try out that might be useful, to have a go at implementing that. Not today, though. The double morphine makes it more difficult to think, been fuzzy-headed ever since I was made to up it. Better fuzzy than how I feel when it wears off though!!

On the plus side of things, got an appointment with Dr. Ho at Manchester Royal Infirmary tomorrow, a proper assessment of HEDS and the issues it causes me, and I'm looking forward to finding out if there's anything I or she can do that might help my joints to be a bit more stable. (I'm tired of dislocating something daily, it hurts =P) Someone who's already seen her in that particular clinic said on the HMSA forums that she's very thorough and good in her analysis and treatment options, and it will be a refreshing change to see a doctor who knows more than word one about HEDS/HMS

SingleSue

Hehe Trialia......me and eldest have found that when you mention EDS, all you get in return is blank looks or a mumble where they are trying to make out what the blooming hell you are talking about!

Trialia

SingleSue wrote: »

Hehe Trialia......me and eldest have found that when you mention EDS, all you get in return is blank looks or a mumble where they are trying to make out what the blooming hell you are talking about!

Tell me about it *g* I get that all the time. I've taken to carrying a print-out of the EDS Bible with me whenever I go to a medical appointment where they might need to know about it - it saves time and/or me dislocating my shoulder to show them (and possibly not being able to put it back! I try not to do that...).

SingleSue

Anyway, does anyone have any advise on what to do with constantly twisting ankles? It has always happened to me right from childhood but it is getting more often and more painful recently...I only have to walk normally for it to happen whereas, when a child, it happened when I sprinted and only rarely on walking.

Feels a bit silly to mention to my physio as it isn't the hugest problem in the world (although painful) so any suggestions would very welcome as it is a complete pain in the bum (or should that be ankle).

Trialia

Sturdy ankle boots, Sue. I find they're a big help to me, I wear them all the time; mine have a low heel, so they don't make my back or feet worse either, and they do help my ankles not to go over (mine go at a 40-degree angle which can hurt like hell if you're not expecting it!).

SingleSue

Trialia wrote: »

Tell me about it *g* I get that all the time. I've taken to carrying a print-out of the EDS Bible with me whenever I go to a medical appointment where they might need to know about it - it saves time and/or me dislocating my shoulder to show them (and possibly not being able to put it back! I try not to do that...).

I tried explaining to the other school eldest goes to for 6th Form (two high schools, do cross site, so the other high school to the one he has gone to from age 11) but they still looked confused. So I printed everything out for them explaining every single part of it....he is allowed to use the lift now in the school when his hips or knees have gone out on the walk over.

SingleSue

Trialia wrote: »

Sturdy ankle boots, Sue. I find they're a big help to me, I wear them all the time; mine have a low heel, so they don't make my back or feet worse either, and they do help my ankles not to go over (mine go at a 40-degree angle which can hurt like hell if you're not expecting it!).

Thanks....have tried ankle boots in the past but my feet and ankles are weird and I found them very painful to wear, although you are right, it stops them turning over!

I can put my feet at right angles to my leg both ways...another party trick and probably why they are being so troublesome now.

formaldehyde_perfume

I have the start of my pain management course today, I REALLY don't want to go, I'm feeling pretty fatigued and a bit down, my pain levels are quite good which is a blessing, but it's still going to take me an hour to force myself in to the shower The good bit is that there is some mild exercise involved so we are expected to come in joggers and trainers .. I usually feel like a failure if I go out and haven't managed to get dressed 'properly' so at least today I will be dressed appropriately.

Trialia, let us know how you get on. It sounds very promising.

EDIT: Ok, so they just rang and the person running the class is sick.

Trialia

Thanks, FP! I got on very well

Official revised diagnosis: mild scoliosis of thoracic and lumbar spine (mid and lower back, apparently separate curvatures); Ehlers-Danlos syndrome type 3 (hypermobility type), and secondary fibromyalgia.

She said very clearly that had I been diagnosed ten years ago, after I'd been presenting to my GP with symptoms of HEDS for about four years, I "would not be falling apart like this". She told me that my joint stability is very bad, and it's going to require intense physiotherapy - not to get me better, because she said that probably can't happen at this point, but to slow the deterioration. And it's going to hurt (she did apologise for that, but I already knew it would). She's also going to get my GP to put me back on amitriptyline at a quarter of the dose they gave me before (10mg makes me a zombie for two days; she's hoping 2.5 will just help me sleep), and if that doesn't work there's another med she wants to try on me. She's also referred me to a specialist physiotherapist and an occupational therapist with experience with hypermobility.

Oh, and they took 11 vials of blood from me afterwards, to figure out if there is any vitamin deficiency that would be helpful to correct, and whether there are any other nasties hiding in the background. Then they did a chest X-ray, as she was worried I may have a chest infection. (Thanks to the blood loss I've been pretty much asleep or zoning all afternoon, literally drained!)

All in all, I was at the hospital two and a half hours - a very successful visit in several ways and a very helpful doctor, and both of those make me squee! I'm so happy to be getting help from someone who knows about EDS!