HMS is EDS III (confirmed at HMSA conference)

24skins

Am rather fascinated by this, my son has no diagnosis for most of his physical problems, but he's known to have hypermobility in some joints, regularly loses the ability to walk, has a history of hospital admissions for injuries that have either come out of nowhere or seem disproportionate to trauma suffered (ie suspected broken collarbone after falling from a sofa onto a carpet), had swallowing problems as a baby which have never been explained and has visible veins on his face which doctors also can't account for... I can sense a trip to the GP coming on...

mummyslittleboy

D&DD wrote: »

The dentist thing interests me as I've always had probs with jabs working..they gave me so much last time I nearly ended up fainting!

Will be interesting to see what the docs say,son has just undergone his 8th surgery for scoliosis and he's only 15.

I give the dentist a very wide birth nowadays I ended up having a root canal done with no anaesthetic as it doesn't work on me and just couldnt take the pain any longer.

24skins wrote: »

Am rather fascinated by this, my son has no diagnosis for most of his physical problems, but he's known to have hypermobility in some joints, regularly loses the ability to walk, has a history of hospital admissions for injuries that have either come out of nowhere or seem disproportionate to trauma suffered (ie suspected broken collarbone after falling from a sofa onto a carpet), had swallowing problems as a baby which have never been explained and has visible veins on his face which doctors also can't account for... I can sense a trip to the GP coming on...

It can be harder for them to diagnoise in younger children my son is like your he is hypermobile and has no speech and has problems swallowing my daughter and I both have EDS III although DD is also under the heart clinic as she has a murmur which is mimicing the sound of a MVP so we have to go back next year to see them again.
I also have scoliosis and a number of other problems, a few weeks ago I tore the ligaments in both shoulders making DS's bed:(

Helen6 I know what it is like to to feel like you are being a burden to the kids I am on my own with 3 of them if you ever need to chat feel free to pm me.

The most annoying thing for me is (apart from the pain and constant tiredness) have to educate the Dr's on a contdition they should all know about I find this really frustrating.

24skins

mummyslittleboy wrote: »

It can be harder for them to diagnoise in younger children my son is like your he is hypermobile and has no speech and has problems swallowing...

He's nearly 11 and has other issues, but has some difficulties (and has had several episodes of illness) that can't be explained through his other diagnoses. I'm fairly confident that he'll receive a diagnosis of this, as it seems to fit the unexplained issues he's had near-perfectly and tbh it'll be a weight off of my shoulders to have a full picture of his problems. Very glad I stumbled upon this thread.

hannahO_2

Hi,

I have now been diagnosed as EDS III with Fibromyalgia-like symptoms and low dosage of Amitriptiline has been advised for pain, fatigue and sleep regulation. Is this mean that Fibro was not properly diagnosed as I wasn't told "You have EDS III AND Fibro"? Does anyone get a definitive diagnoses when it comes to Fibro?

Trialia

Hannah, most of the time the fibro symptoms with us EDSers get written up as "probable fibromyalgia" or "secondary fibromyalgia" (I've had both - 'probable' from the pain specialist and 'secondary' from my rheumatology specialist) as that's what they are. Not much they can do to help the fibro if you have EDS type 3, as the dislocating joints constantly trigger it. I have both on my record and am also on amitriptyline at a very low dose, if you're interested in talking about any of that over PM. Not supposed to discuss dosage etc. on threads.

hannahO_2

Thanks Trialia. I've been explained about dosage and I've read other people's experience with Ami so I have some idea about it. Dr found out that I have flat feet too (even my feet clicks lol) which is common amongst EDSers so I was referred to a foot specialist and physio. I guess my Fibro is due to my loose joints and my body is so tight all over but it's there for a reason...to stablize my bone structure. If I have a massage, my structure will be unsteady so that's no good either. I cannot win either way and it's something that I'm gonna have to live with.

Trialia

hannahO wrote: »

Thanks Trialia. I've been explained about dosage and I've read other people's experience with Ami so I have some idea about it. Dr found out that I have flat feet too (even my feet clicks lol) which is common amongst EDSers so I was referred to a foot specialist and physio. I guess my Fibro is due to my loose joints and my body is so tight all over but it's there for a reason...to stablize my bone structure. If I have a massage, my structure will be unsteady so that's no good either. I cannot win either way and it's something that I'm gonna have to live with.

This all sounds very familiar! I start hydrotherapy next month, and I have an assigned occupational therapist. Joint braces all over, eventually, though I only have one on my right wrist for the present...

hannahO_2

Pilates and swimming were suggested in order to strengthen my muscle with minimal stress on the joints but I hate water sports I am so tired and battling with sleepyness and I'd be in trouble if I went to Ikea as you would find me in bed taking a nap without a hint of shame! I feel like wearing a neck collar to give my neck a support but I've been told it's not so good to wear braces too long as muscle will waste. I guess it's a different matter for you if your joints keep popping out you have to endure painful procedure to put joints back in, I'd also go for a permanent support or braces. I hope your therapy will improve quality of your life.

Trialia

Mm. My right hand is my dominant hand, so it needs to stay in. I'm under orders to wear the brace whenever I'm using my walking stick, as I usually have that in my right hand, and to rest my hand in it from time to time too. But yeah, my joints... I dislocate something daily. I'm falling apart, they're just trying to slow it down.

cally6008

Good news, finally got appointment to see senior physio at local hospital who specialises in HMS Fibro problems

If anyone here is from Cumbria, our group was informed yesterday that we were the only Cumbria HMS group covering the whole of Cumbria yet we only have 9 members. So if you're from anywhere in Cumbria from Barrow-In-Furness all the way up to Scottish Border and suffer from HMS, get in touch with me and I'll point you in direction of the group leader