The (not so old) Crocks Cafe -Part 2

SingleSue

Thanks LW...I am sure I will be fine but knowing me, I will still have an anxious night tonight and hardly sleep!

Good idea about the list, I wouldn't have thought about that and then would have kicked myself after the appointment at not mentioning something that really should have been mentioned (my brain goes into panic mode in appointments for myself, never does for the kids appointments though)

Needing-help - I am only really at the start of our EDS journey and still learning what it actually means for eldest son but if I can help in anyway, then feel free to ask. Trialia though knows way more than me and can probably answer questions on the functional aspect a lot better.

If it is any help, eldest has hypermobility type with some crossover to classic type, middle son is also a probable but not so much hypermobility type and youngest is a possible with similar symptoms to eldest (youngest confirmed HMS since a toddler).

But if I can help in anyway, I will.

formaldehyde_perfume

Crying is exhausting, yet I can't sleep, what's up with that?!

The sooner I move, the better.

Thank goodness for mothers.



On the plus side the local HMSA are having a meet up at the end of the month so that's something to look forward to

Trialia

Owwww. So after my last post I had choir practice. Had a clueless bus driver on the way home. He didn't pull up to the kerb and he didn't lower the step, so I had to pull myself up onto the bus with my left hand on the door handle and right bracing off my stick - and I put a bit too much of my weight on the stick because my left shoulder's been dislocating, and something is definitely wrong in my wrist. Possible one of the small bones dislocated, but it won't go right again, and I'm right-handed, so ow ow ow ow ow. At least I can type left-handed...

SingleSue

Just got back from Rheumi....not feeling like I have got very far.

He kept going on about MY Ehlers Danlos and how it is lucky my joints have stiffened up as it will help protect against further damage in those joints. I said to him I have never been diagnosed with EDS, only my eldest son has and he started going on about the blurring of lines between benign joint hypermobility and EDS and the arguments the various Rheumatologists are having about it. Then he said it was extremely likely, taking into account eldest's diagnosis, that I have it as well and that it has come from me...he could have said that in the first place instead of just saying "your EDS" right from the get go.

He then told me my weight is not helping matters and that was the end of the appointment! No discussion on alternative treatments, no further physio, no follow up appointment, nothing.

So I am now left confused...do I have EDS or not? Guilt - if I do, then it is my fault eldest is in so much pain. Depressed as I was hoping for answers..defined answers instead of vague ideas (and ok, a magic wand to make it all go away). I can work on the weight issue but I have had these problems big or small..it's just that they have got worse as I have got older, not heavier, in fact, the back problems were worse when I was skinny, hence the not being skinny now!

At the end, I handed him my carefully prepared notes I had made last night detailing my life of joint problems (even when underweight and a dancer) stemming from primary school, my illnesses and the family history.

So, it felt like a waste of his and my time and has only served to leave me more confused than I was before.

Indie_Kid

well, what a waste of time that was:

GP: what can I do for you today?
Me: My stomach's burning and I'm full of phlegm
GP: I'm going to listen to your chest

She then decides to feel my stomach - which hurts a lot.

According to her, my breathing & swallowing difficulties and my stomach burning (had the latter before) is nothing to worry about. Apparently, it's just a virus.

formaldehyde_perfume

A pharmacology person came to see us at my pain manegement course before Christmas and she suggested trying to take tablets with yogurt, now I have my DLA I can afford luxuries like that so I tried it today and it's so much easier than with a drink! I thought I'd share this with you guys as I know a lot of you take lots of pills and might not have tried it before.

Singlesue - that's really crap to hear, make a note of his name and make sure you don't see him again. I think it's perfectly clear that you do have EDS/HMS, from a fellow sufferer and totally non medical view point. It is also probable that you have passed this on to your children but it's in no way your fault, I'm sure if you have known you had a genetic condition you would have thought about having children more carefully but I suspect you would still have had them as I am sure they're your whole world; perhaps if you'd known about your condition then theirs would have been spotted earlier but that's looking backwards and you can't do anything about the past, you certainly shouldn't feel guilty although I know that's hard, my mum blames herself when I have a fall and I'm 22, I think that's just part of being a mother and a carer. I think you should take your eldest to the GP and ask about pain relief, perhaps even a referral to somewhere that specialises in children like GOSH, depending on where you live there might be one more suitable closer by. They can provide things like understanding pain courses (suitable for the childs age) , perhaps understand what pain killers work better for kids vs adults, and teach him about what is suitable exercise and what isn't. Feeling like he's in control might mean he's more sensible and has less flare ups, it's worth a try! Also, the rheumy will send a report back to your GP, mine prints me off a copy if/when I ask but they are allowed to charge for this, it might help to read through the report as he may put a definitive diagnosis down on paper which he hasn't actually explained to you.

Trialia

Sue, you probably do have it, from all you've said in this thread, but it's not your fault your kids do too. Luck of the draw - with an EDS parent, you have a 50% chance of getting it or not. My dad has it, and I have a sister who doesn't. So it really isn't your fault. To have all three with it, there's a fair chance that your kids' father probably carried the thing too. It really isn't your fault; you don't choose your genes!

They officially count HMS and HEDS as the same thing now, as of the last Hypermobility Association conference - Prof. Grahame and a couple of other people presented a paper to support it, and the BMA decided to classify them as different degrees of the same condition.

Honestly, as far as not offering treatment goes, there isn't that much that they can do for yours at this point - I would ask about hydrotherapy, but most of the damage is already done. That's what my specialist told me - had she caught me ten years ago, she could've done more about it, but sufficient damage had been done by this point that she couldn't do much to help, just try to stabilise.

HEDS is, depressingly, degenerative. You're older than I am, but I'll probably be where you are by your age, even with the treatment I'm getting now (occupational therapy & preparing for hydrotherapy).

Edit: I was writing this post while fp was writing hers, but I'm typing more slowly at the moment. One of the bones in my wrist is definitely out of place - I can see it just to look at, now - so I'm being very careful.

needing-help

Trialia wrote: »

For what it's worth, I have Ehlers-Danlos as well; type 3. I've been being kicked by it (progressively more) since I was about the age your daughter is now.

Do you know what type your GP thinks she may have? Hypermobility type (type 3) is the most common (about 1 in 5,000 people).

If Sue's not around or doesn't have the spoons, I'm happy to answer questions about it by PM, I don't mind.

SingleSue wrote: »

Needing-help - I am only really at the start of our EDS journey and still learning what it actually means for eldest son but if I can help in anyway, then feel free to ask. Trialia though knows way more than me and can probably answer questions on the functional aspect a lot better.

If it is any help, eldest has hypermobility type with some crossover to classic type, middle son is also a probable but not so much hypermobility type and youngest is a possible with similar symptoms to eldest (youngest confirmed HMS since a toddler).

But if I can help in anyway, I will.

Thank you both any help would be much appreciated I have no idea where to start or what to do. At the moment I am feeling so guilty, all the time her joints have clicked and she has said it hurts I have told her she would grow out of it but it's getting worse. Last week she streched and both hips made a huge click and she couldnt move. I helped her up and they clicked and she was crying in pain.
She doesn't walk far before she says her legs hurt and I have put it down to her just being lazy.
I have been sat crying about what I have done to her:(

Trialia I would love to talk to you thank you and hope you are feeling better soon.

Sue and FP Sending you hugs and hope things improve soon.

xx

soolin

Hmm, I am working and staying away over the next few weeks and am required to remain in a venue for 'long' days where food will be provided, I then stay in a travel lodge style place overnight each day. I requested gluten free food at the venue for lunch (I have coeliac disease) and have just been told that they will not supply this due to budget cuts so I can either eat the normal sandwiches or have to go without.

I hate making a fuss but I decided to just explain that if they were unable to provide lunch for me along with my colleagues then I will of course be driving into the nearest town each day to make my own lunch arrangements.

Heavens knows what would have happened if I had had a proper disability or need as many on this forum do, what then? Refuse to pay me because I wasn't able to be normal like everyone else.

I feel a bit funny about it actually, almost embarrassed as though I asked for something I wasn't entitled to.

formaldehyde_perfume

soolin wrote: »

I requested gluten free food at the venue for lunch (I have coeliac disease) and have just been told that they will not supply this due to budget cuts so I can either eat the normal sandwiches or have to go without.

Thats horrific!

It's not even that uncommon a condition, a lot of people have medical dietary requirements these day. If they could see the damage that gluten does to your insides they'd be horrified as well. Personally I'd get them to pay your bloody fuel and parking costs too, if I have paid for food to be provided as part of an arrangement then I fully expect to be fed with suitable produce, end of.