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Trialia

serenity79 wrote: »

If your blood pressure drops when you get up or your heart rate rises (what happens to me) you could certainly have some form of dysautonomia. Might be worth getting that looked into further.

Hmm. My new GP did say at my first visit to her, just a couple of months ago, that my blood pressure is on the high side (while seated). I get spikes of pain in my head and dizzy spells when I stand up, so I have to go very slowly to minimise the pain, but I do still get dizzy.

I want to update my DLA form with the morphine etc., but I can't face filling the damned thing out again a minute before I have to...

sunnyone

Trialia wrote: »

Eventually she will, though, and so will I. It's what happens with hypermobility syndrome and EDS when you have it badly. Wear and tear lands you with joint damage - my father has early-onset osteoporosis and arthritis from it.

I had a osteo arthritis diagnosis in my late teens which meant I couldnt try and lift anything heavier than a couple of k, that was in my spine and my hips, I now have rumitoid arthritis and thats an autoimmune illness totally diffrent from osteo.

Trialia wrote: »

Several of the experts on connective tissue disorders say that there is no difference between HEDS and HMS: that the only real variation is severity. You can find people who are hypermobile who don't dislocate their joints, have no pain at all and are just stretchy - then at the other end of the scale you have people like me, with chronic daily pain and dislocations so frequent we need mobility aids (I walk with a cane, and use a mobility scooter when I go shopping as I can't stay on my feet for very long). I'm on morphine.

I know you're not quite at my stage, at least yet, but I do wish people would listen to the difference between hypermobility and hypermobility syndrome - you don't get labelled with the syndrome unless it causes you problems, and there is no effective treatment for it!

I have turned down another assessment for my HMS, theres no point but my GP keeps asking me if I want one but what would it matter?

I would still dislocate my hip getting out of bed and nothing will cure that.

Morphine isnt the strongest painkiller as many people assume, Im on a drug 80xs stronger which has much lower side affects have you had a recent drug clinic review? Things are changing week by week and diffrent treatments and drugs are always worth discussing with your pain managment team.

JJ you can get fisher sticks in diffrent colours, my dress pair are bronze but I have red and blue as well, I live in hope that I will use them again, pie in the sky but treatments change and maybe oneday one will be able to put me back together again. I paid £25 or so per pair so they arnt really expensive.

SingleSue

serenity79 wrote: »

Sue, has he ever been checked for Mitral Valve Prolapse? This can be an issue for people with HEDS.

Yes he has, it was because that came back as normal that they took Marfans out of the equation.

Due to other factors, he is classed as HEDS with crossover to classical EDS and because of this, they want to keep an eye on his aortic root.

Trialia

SingleSue wrote: »

Due to other factors, he is classed as HEDS with crossover to classical EDS and because of this, they want to keep an eye on his aortic root.

Yeah... I know a lot of people with some crossover. My father had had 3 otherwise unexplained heart attacks by the age of 50 that could very likely be down to that. His mother, also hypermobile, though less so than either of us, had heart problems too...

Genetic cleansing would cause as many problems as it solved, but sometimes I wish we had it for things like this.

idvi

just another update,

i have a medical for the bb tomorow

doctor wrote to them so all that is okay

im guessing im just going to be asked a bunch of questions

(havent been reading the thread because of all the arguments so i have no idea what everyone is currently talking about) - i will just continue to update

little_girl_lost

This is exactly why I dont tell anyone about my panic attacks, not even my own mother.

every 1 thinks your crazy and should pull yourself out of it. If only they were in my head.

Its not a concious thing - its like your brain gets mixed up and sends you into panic mode at an inappropraite time.

*sigh*

kusadasi040667

Trialia wrote: »

Hmm. My new GP did say at my first visit to her, just a couple of months ago, that my blood pressure is on the high side (while seated). I get spikes of pain in my head and dizzy spells when I stand up, so I have to go very slowly to minimise the pain, but I do still get dizzy.

I want to update my DLA form with the morphine etc., but I can't face filling the damned thing out again a minute before I have to...

Each time my morphine patches or liquid morphine increase by a decent amount I just phone them up and as I'm not asking for my claim to be looked at again they just update my claim over the phone. I have to call them on Monday as it happens as my patches have increased to 105 mg I am on HRM , HRC so of course its just an update however I did advice them when I was on HRM but just MRC of meds change & I still didn't fill in forms,So hopefully you may not have to as I agree it's another thing to do .

Indie_Kid

kusadasi040667 wrote: »

Each time my morphine patches or liquid morphine increase by a decent amount I just phone them up and as I'm not asking for my claim to be looked at again they just update my claim over the phone. I have to call them on Monday as it happens as my patches have increased to 105 mg I am on HRM , HRC so of course its just an update however I did advice them when I was on HRM but just MRC of meds change & I still didn't fill in forms,So hopefully you may not have to as I agree it's another thing to do .

I personally haven't updated about them about meds change, unless it means my needs change

kusadasi040667

sh1305 wrote: »

I personally haven't updated about them about meds change, unless it means my needs change

I understand what you are saying & if it's to add a paracetamol then ok but if you have an increase or decrease in a drug such as morphine or had baclofen & catheters introduced or taken away you are supposed to let them know as this is a change in your situ & it's part of the agreement of DLA . It is actually beneficial to you to do so . Also if in a few months you needed to let them know about an issue and mentioned a med that they have not got down for you on your claim then they would say oh & what date did that start & why have we not been informed.It just keeps everything in order so no come back on you
:beer: K

Indie_Kid

kusadasi040667 wrote: »

I understand what you are saying & if it's to add a paracetamol then ok but if you have an increase or decrease in a drug such as morphine or had baclofen & catheters introduced or taken away you are supposed to let them know as this is a change in your situ & it's part of the agreement of DLA . It is actually beneficial to you to do so . Also if in a few months you needed to let them know about an issue and mentioned a med that they have not got down for you on your claim then they would say oh & what date did that start & why have we not been informed.It just keeps everything in order so no come back on you
:beer: K

Oh I see. I didn't realise I had to do this. I haven't informed them that I'm now on medication; but I'm probably changing it next week.