A short sad history of ME/CFS

ash4becks

Trialia wrote: »

Or, you know, not. You must be incredibly lucky, because I am 24, I have a diagnosis of HMS/HEDS - and I walk with a cane, cannot take a step without pain radiating through my legs, can't get out of bed during my period because my hips subluxate every moment, all my joints are increasingly unstable and I wind up in A&E three times a year on average for relocations/reductions that I can't do myself. I am on morphine, not for the fibromyalgia but for the arthralgia resulting from HMS. I also have secondary fibromyalgia which was caused by HMS.

Don't judge everyone by your lucky standards. HEDS/HMS has this thing - with parent and child who have it, it tends to be worse in the child, and worse in their child - and I have seen that in all the families I know who are affected by it.

and SingleSue

i think iam kind of inbetween both of you condition wise Trialia your same age and frankly it poo, iam a bit scared and just want to know whats going on and how best to treat it, i dont want to be a burden to my mam and dad he is not far of retierment either, but what i dont get is my mam or dad dont have hms at all, is that possible

do think it is going downhill though fast cant belive that 6 months ago depiste my depression i could do asda and a full wander round all the shops and now asda is pretty much out of the question unless i push and pay for it ,

odd few shops for essentails like gas and elc payed bread, milk over a pint now to heavy to carry without spints and thats still puting me back a day or two bad for even a hour 2 max out of the house, iam learning thou nothing heavy unless i have no choice and if i do use the backpack on wheels:(

sunnyone

Trialia wrote: »

Or, you know, not. You must be incredibly lucky, because I am 24, I have a diagnosis of HMS/HEDS - and I walk with a cane, cannot take a step without pain radiating through my legs, can't get out of bed during my period because my hips subluxate every moment, all my joints are increasingly unstable and I wind up in A&E three times a year on average for relocations/reductions that I can't do myself. I am on morphine, not for the fibromyalgia but for the arthralgia resulting from HMS. I also have secondary fibromyalgia which was caused by HMS.

Don't judge everyone by your lucky standards. HEDS/HMS has this thing - with parent and child who have it, it tends to be worse in the child, and worse in their child - and I have seen that in all the families I know who are affected by it.

I couldnt lift heavy things and had some other problems but thats my experiance of HMS then, 10 years after diagnosis is worse than most others, before the internet you were the only HMS'er on the planet!

SingleSue wrote: »

So true Trialia, it is only really now it has got to the stage where I need to use a stick and having major pain but my eldest son however, is already almost at that stage at age 16.

I did have problems earlier on in my life but compared to eldest, mine were a lot less than he has already had to contend with.

Both my kids have it and despite my warnings they both did the same as I did and thay make it there party trick to make everyone else squirm but before the internet would I have know that it was wrong to stop them doing it? (and that as someone who has a firm diagnosis of 30 years)

ash4becks wrote: »

and SingleSue

i think iam kind of inbetween both of you condition wise Trialia your same age and frankly it poo, iam a bit scared and just want to know whats going on and how best to treat it, i dont want to be a burden to my mam and dad he is not far of retierment either, but what i dont get is my mam or dad dont have hms at all, is that possible

do think it is going downhill though fast cant belive that 6 months ago depiste my depression i could do asda and a full wander round all the shops and now asda is pretty much out of the question unless i push and pay for it ,

odd few shops for essentails like gas and elc payed bread, milk over a pint now to heavy to carry without spints and thats still puting me back a day or two bad for even a hour 2 max out of the house, iam learning thou nothing heavy unless i have no choice and if i do use the backpack on wheels:(

Agian you are confirming why you wont get HRMC ash.

ash4becks

sunnyone wrote: »

I couldnt lift heavy things and had some other problems but thats my experiance of HMS then, 10 years after diagnosis is worse than most others, before the internet you were the only HMS'er on the planet!



Both my kids have it and despite my warnings they both did the same as I did and thay make it there party trick to make everyone else squirm but before the internet would I have know that it was wrong to stop them doing it? (and that as someone who has a firm diagnosis of 30 years)



Agian you are confirming why you wont get HRMC ash.

then tell me why

iam trying to get better dispite it really being painful all the time now, iam not doing the swiming as yet just the physio and start hydro fri till i no 100% is going on

you no why i want hrm so bad so i can get to swimming to bulid up so i can walk better then contuine to do so then hand back the car when iam better so i dont need a car to just go somewhere where i used to be able to walk , and i can use a bike to get to the gym and maintain the level of mussle tone and hopefully that will work because atm i have musle wastage at my age theres noway i should have that

Indie_Kid

ash4becks wrote: »

but what i dont get is my mam or dad dont have hms at all, is that possible

They might be carriers? I know this is true for a I condition have - no-one in the family has it, but after having a few tests, they discovered that mum does carry the gene that has lead to my sight problems.

SingleSue

sunnyone wrote: »

Both my kids have it and despite my warnings they both did the same as I did and thay make it there party trick to make everyone else squirm but before the internet would I have know that it was wrong to stop them doing it? (and that as someone who has a firm diagnosis of 30 years)

Even with the internet, eldest still likes to gross people out with his party tricks despite my warnings. He thinks it's funny to make people go "Ewwwwwww" :rotfl:

He pays for it afterwards of course, but thinks it is worth it to see the faces people pull....strange child!

Mojisola

sunnyone wrote: »

ME and fibro arent a diagnosis, they mean that nothing else can be found to be wrong with you.:p

You only get results from the tests you do. There are tests that show problems in people with ME, such as mitochondrial function tests, but the NHS won't pay for them. Spect scans of the brain show disfunction in blood flow but the NHS won't pay for them. There are other examples in the research literature but the NHS seems to have no interest in finding the physical causes ME.

Trialia

sunnyone wrote: »

I couldnt lift heavy things and had some other problems but thats my experiance of HMS then, 10 years after diagnosis is worse than most others, before the internet you were the only HMS'er on the planet!

Not true, actually; I have a very close friend offline that I happened to meet entirely without aid of the internet who also has HMS/HEDS - as does my father.

I've been enduring chronic dislocations and pain for the past 10 years; before that, rib pain and ankle subluxations, but mid-way through puberty it really decided to take off. And now I'm like this.

As I've said - you're lucky.

Trialia

ash4becks wrote: »

but what i dont get is my mam or dad dont have hms at all, is that possible

It is. HMS/HEDS very occasionally turns up in a de novo mutation, which is to say parents would be unaffected and wouldn't be carriers either. Sometimes it just happens. Most of the people who have it badly have it in their family, though.

ash4becks

Trialia wrote: »

It is. HMS/HEDS very occasionally turns up in a de novo mutation, which is to say parents would be unaffected and wouldn't be carriers either. Sometimes it just happens. Most of the people who have it badly have it in their family, though.

and
well just spoke to dad while over cuting grass for me , his mam died before i was born had rematroid arthritis ended up in a wheelchair and he had something wrong with his bones as a kid but didnt no what, i guess it could be related

sunnyone

Trialia wrote: »

Not true, actually; I have a very close friend offline that I happened to meet entirely without aid of the internet who also has HMS/HEDS - as does my father.

I've been enduring chronic dislocations and pain for the past 10 years; before that, rib pain and ankle subluxations, but mid-way through puberty it really decided to take off. And now I'm like this.

As I've said - you're lucky.

Lucky?

How do you work that out?

My HMS was not a huge problem until after my accident but believe me when you smash up your body it rears its ugly head and makes sure that you dont heal the way normal people do, my pelvis and spine never healed up and using crutches with HMS is fun, and it gets better when you become a full time wheelchair user and need to self propel with your hands falling apart, your shoulders always popping out and and just swiveiling your self around in your wheelchair to look at something dislocates a hip.

Lucky isnt a word that anyone uses about be.