Hypermobility-What if you were told....?

shays_mum

JoJo, what is a PITA patient - i am thinking its something not to do with bread?!

Savvy_Sue

Pain In the A....

PandorasJar

shays_mum wrote: »

JoJo thanks for the break-down it was wonderful!, now to get the Gp to send me for them. Being in my 'fog world' i feel like such a baby, thank-you for the pep talk about how to handle another rheumy i honestly can't think straight & just to type this i am making loads of mistakes as my wrists & hands are swollen
Forgive me in advance if things don't make sense, as what's in my mind does not necc come out correctly or even make sense
Pandora's jar def agree about the lift bit!, again, like i have a choice to be in pain 24/7/365 ......now to find a more understanding rheumy......pls pm me if you have any suggestions London Wide , thanks in advance.

I'll PM you the top specialists name. He has also written books etc on the matter. And I'll give you the website link if possible (or remove www) for you
That's in London.

P

mum-of-3

shays_mum I can see the doctor asked you about contraception- It can defiantly make a difference in some people and as you said like me you had SPD. Which is a hormonal thing, my first and last day of my period I am confined to my bed due to the excruciating pain in my pelvic bone and sacroiliac joints. This in turn increases my HMS and fibro for those days. I was told by a specialist not to take any contraceptive pills because of this!

Trialia

Shays_mum, was it Professor Grahame you saw?

shays_mum

mum-of-3 wrote: »

shays_mum I can see the doctor asked you about contraception- It can defiantly make a difference in some people and as you said like me you had SPD. Which is a hormonal thing, my first and last day of my period I am confined to my bed due to the excruciating pain in my pelvic bone and sacroiliac joints. This in turn increases my HMS and fibro for those days. I was told by a specialist not to take any contraceptive pills because of this!

Mum-of-3 he did'nt ask me anything about pain/what medication i was on!, but i will remember this.....thanks-now do i stop the yasmin or not?. The flare up on my shoulder is not new, the feet problem came before i took Yasmin, but the elbow & weakness on my thumbs is new.......decisions decisions!!!, do i stay or do i get off it?!

chrissie_bond

Hello - all of this sounds very familiar. I have HMS and marfans syndrome, at the moment my worst joint is my left shoulder which was operated on in Arill as it was constantly clicking in and out. Since then although it has improved-its very slow- I have been left with a problem with spinning and sickness which started straight after the op.

Am seeing my Doctor next week to talk about some stronger pain meds. My Doctor has never mentioned the pain clinic to me.

Have just scored zero in my last medical for ESA!!

Sorry I cannot be of any help to you but try and keep strong - you are not alone.

shays_mum

Chrissie bond so sorry to hear about your op , yer my gp would not have mentioned this, this was via a consultant.....my tendinitis has flared up so bad i can't put my foot fully on the ground, its like lightening going up to my knees
Thanks for your kind words, stay strong & as you say your not alone either x

SingleSue

For years my eldest son was dismissed as just having growing pains, or overdoing his exercise and to my own guilt, I listened to them.

Eldest was diagnosed with severe HMS in October with a possibility of Ehlers Danlos or Marfans due to his amazingly stretchy skin, cardiac problems, cold hands and feet etc. His shoulders and knees dislocate just by movement, he has winged scapula and unstable wrists...this obviously causes a great deal of discomfort.

I have hypermobility, no idea if I have HMS, never had it checked to be honest but I have pain every day now due to arthritis but it has never been taken seriously.

Youngest also has HMS, not as severe as eldest (he does have a myriad of other things) but he is the only one that is in receipt of any disability benefits...eldest is still trying to decide if he should apply but at the moment, he sees himself as more enabled rather than disabled as he can bend his body to weird angles to get things others can't!

I feel so much guilt at having taken what the doctors said as the truth, so much guilt I believed them over my eldest son, so much guilt over how much he has suffered with pain over the years because of that belief and faith in the medical profession.

Fantabulous

shays_mum wrote: »

What would you say if a Dr diagonised you as highly hypermobile, they had seen the severe tendinitous (Sp?) in your feet, so you could'nt walk without pain (baring in mind you already have arthiritus in your toes & neck). I cannot hold a newspaper or drive as my shoulders are so swollen, which in turn effects my double-joined elbows & wrists.
Only to be told, alot of it was in my mind & that i should go to a pain clinic, to change my perception of pain??.
I have been able to firm the pain from a youngster to now (36), but i went into see him as both my upper/lower bodies were effected, essentially making me non-mobile. I feel so exhausted all the time as i can't sleep, have all the classic symptons of FM, live in a fog world & constantly feel weepy . With young kids, i can't just give up, they are totally reliant on me.
I feel so helpless as all this (the flare-up, not the pain-that's always there) happened in the last 6 months & i really feel i am stuck, i don't know where to turn anymore, am so confused, sorry am rambling
Any advice is much appreciated, thanks in advance.

Get yourself to your GP and request a referral to a Rheumatologist asap

I went through all of this with my GP telling me that work was causing my pains. When, in fact, I was hypermobile (in hands, wrists, elbows, feet and ankles).

I was diagnosed with inflammatory arthritis now Rheumatoid. The Rheumatologist can give you medication to help with the pain. I was recently diagnosed with Fibro too. The Rheumy said that I had had the hypermobility since childhood (undiagnosed) and that it does cause inflammation in the affected joints, hence the arthritis. Mine started at 26 and I am now 46

Do ask for a referral - your GP is not the person to do this type of diagnosis.

Hope all goes well for you. Do pm me if you want to chat.