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

shays_mum

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.

jetta_wales

Oh that must be such an impossible condition to get by with and since the only bout of cronic unavoidable pain that I've ever had only lasted 6 months (but I was ready to swing for anyone who said, "have a hot bath" or "have you tried accupuncture?" the cartlidge in my rib cage had a big crack in it that will never heal but growing a baby in your belly forcing more on more preasure on it was completely debilitating. But I've no experience of living with anything like what you're going though I still just wanted to post to say that however torn you may feel it's only because you've got such a strong mothers instinct and that's definatly a good thing, I hope it does help you to keep going.

You're always entitled to see a different doctor if you want to, if you don't feel that yours is being properly understanding and supportive of your condition. Don't be afraid to stick up for yourself and make them understand or make them pass your care onto somebody else who will.

Sorry I can't be of any more help but I do hope that there are others here with more experience to offer some advice.

Best wishes x

shays_mum

I won't even go into the severe SPD i had from 12 weeks with each 10lb baby i had!, if i did'nt laugh i would cry , but thanks for your kind words jetta_wales, i hope all went well with your with the baby x

jetta_wales

shays_mum wrote: »

I won't even go into the severe SPD i had from 12 weeks with each 10lb baby i had!, if i did'nt laugh i would cry , but thanks for your kind words jetta_wales, i hope all went well with your with the baby x

They kept an eye on her blood flow through the placenta with weely scans (which was great we got to see her every wednesday) and then we kept an eye out for any withdrawls from the painkillers I'd had but she showed no signs once she was born. I cried through most of the second pregnancy because you feel so guilty taking painkillers but if you don't take them you can't take care of the baby you already have so i did have to take stronger pain killers but she was fine too. Hopefully it will heal when I'm in my 30's and the cartilidge turns to bone. Wierd but I never get anything simple it's always got to be obscure lol.

I definatly agree with if you don't laugh you'd cry and anything that might ever make you smile or laugh is worth grabbing with both hands and my girls make me giggle all the time. When they're not trying to kill eachother that is lol but they're pretty good.

shays_mum

lol x i know i have one of each, they bring me great joy - when they are NOT fighting , glad all went well with your little one!. I had blood blisters/c-section scar infections on my belly so i had to take high dose amoxcilyn thru both pregnancies, you do feel guilty, but its better than something far worse happening! x

LameWolf

Shays_mum, I do feel for you, having not had a pain-free day myself since I was 17 (I'm nearly 50 now).

Jetta_wales is right; ask to see a different doctor if you are being dismissed so lightly. You have the right to be taken seriously.

However, you might be interested in how I got on, and maybe my experience will help?

I first saw a Pain Clinic in (about) 2000, and went through the usual coping-with-pain course, which was not a lot of help, as they didn't tell me anything I hadn't figured out for myself; the fact that I'm not good in "group" situations made the whole thing something of a nightmare, too! *insert Rolleyes*

Moved house (and area) in 2002, had to go through whole referral thing again.

Long story short, got referred to Pain Clinic in new area, saw their doctor who totally dismissed me (I honestly got the feeling he hated women), he referred me to their psychologist, she agreed with me that coping-with-pain course was not appropriate for me, and referred me back to the hospital Pain Doctor service; I made it clear I didn't want to see the same unhelpful chap again.

Again, long story short, I finally got to see a very helpful and kind Pain Doctor, who prescribed me morphine. Result!!:j Whilst my pain is still with me, it is reduced greatly, and I can actually function, albeit in a limited fashion, which I could not before.

You don't mention having been given ANY pain meds in your post; I was already on co-codamol and diclofenac; the next option would normally have been Tramadol, but that doesn't go with my anti-depressant, and then NEXT one on, the name escapes me just now, doesn't go with hydroxychloroquine, which is why they've now put me on morphine. I only mention this because I don't want you to panic and think they'll put you straight on morphine.:)

Anyway, in the first instance, if it was me, I'd go see a different GP, and explain to him/her WHY I wasn't seeing the same one as before.

I wish you the very best of luck, and hopefully pain-free days in the near future.

mum-of-3

Definitely try another GP at your surgery my GP has been great with HMS as she has had a family with it she has been treating for years. Although with the fibro she has never treated anyone with it as severe as me but is quite good at researching and trying to find information out for me to help.
Definitely go to the pain clinic especially if it is at a big hospital- I have found the one I go to really helpful.
They can also go through pain meds with you, I have trialed a few things that my GP has not prescribed before so it has been learning to see what works and what doesn't.
This coming from someone who also had severe SPD and was hospitalised with it and still has it 12mths later as well as in the sacrilolic joints and osteosis pubis. Hypermobility Syndrome and fibro- depression but im working through it!
I to have 3 small children. It is important to find the right GP.

shays_mum

Thanks guys for your experiences , maybe i should not be so quick to devalue the help of the pain-clinic, apparantly the Dr was not sure if i was in enough pain, as to whether the pain clinic would see me!!
The prob with medication is i react badly to the co-proxomals/morphine based meds, i have seen 3 major ops with paracetamol alone!
Ok so what if i know was to tell you this Dr is a super-duper specialist in this field..............?!, is it all in my head, if the physical symptoms are there??. He actually asked me "if things are so bad, how do you cope with kids/work/100 mile commute every week?, like i have a choice in the matter!! x

jetta_wales

shays_mum wrote: »

Thanks guys for your experiences , maybe i should not be so quick to devalue the help of the pain-clinic, apparantly the Dr was not sure if i was in enough pain, as to whether the pain clinic would see me!!
The prob with medication is i react badly to the co-proxomals/morphine based meds, i have seen 3 major ops with paracetamol alone!
Ok so what if i know was to tell you this Dr is a super-duper specialist in this field..............?!, is it all in my head, if the physical symptoms are there??. He actually asked me "if things are so bad, how do you cope with kids/work/100 mile commute every week?, like i have a choice in the matter!! x

Will he not even refere you to the pain clinic then?

I saw the people in the pain clinic they were really helpfull and gave me morphine to take if I needed it at night (a gross tasting syrup) because taking strong co-codamol every four hours got me through the day but if I woke at night I couldn't have more because I'd have had my 4 doses of paraceptamol for that 24 hour period.

Tell him you're not coping with the kids or with work and it's breaking you down to the point that you are facing the decision of having to quit work and get full time support for you and for looking after your children if you can't get some proper help in dealing with this pain so it doesn't have to stop you living your life and caring for yourself and your family more independantly.

Don't be afraid to let your emotions show either even if they stand a good chance of getting the better of you. If you end up in tears when talking about the possibility of quiting work instead of fighting to hold those emotions back then maybe he'll actualy get the point so be completely honest and open emotions and all.

shays_mum

It is feeling that i am coming to that point, but then you think you have to get up for the kids if nothing else!, i can't take any of the morphine based meds as they make my head go loopy!
I will push for the pain clinic & your right why should i have a stiff upper lip!!, for the time being, i wish i could get a temp blue badge or something, as my mobility is so badly effected
I have no life for my kids as i can't walk/stand for periods of more than a few mins, every journey is planned to precision, its either there is parking there or i don't go. Shopping or going out with friends is non existent aswell.
I have not left this country in over 10 years as i can't face the thought of the pain crippling me in another country :(my kids can't hug me too tightly around my neck or back as the agony of it is excruciating, i really feel bad for them

Jojo_the_Tightfisted

Change doctors. See a different Rheumatologist - they deal with HMS and RA and Fibro and should be perfectly aware of how the pain from RA can go but then the HMS pain can kick in, get blood tests - ESR CRP RF, even ANA ENA anti-Sm.

Even if RF ENA ANA & anti-Sm are negative, ESR & CRP should be able to give some idea of whether there is an inflammatory process at work. You are at an age where RA can rear its head if it hasn't done so before, but you don't mention this being considered.

If there is inflammation, steroid pulses are one of things that can be considered as a temporary measure.

You are obviously unwell, perhaps explaining how you feel as you have done here would help.

Good luck.

And even if you don't have a diagnosis, you sound as though a DLA claim is appropriate. Get help to fill it in. A blue badge would also sound necessary, from the local council.