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

Trialia

Shays_mum, get a different GP to refer you if you can. Hypermobility syndrome and hypermobility-type Ehlers-Danlos syndrome (which are often described as being the same thing nowadays) can have fibromyalgia as a secondary, resulting condition, and I have HEDS and fibro both. You should absolutely get to go to the pain clinic from all you've described, particularly if you've been diagnosed as suffering from hypermobility with chronic pain, because regular hypermobility doesn't bring it, just HMS or HEDS.

shays_mum

JoJo, the blood tests you mentioned, are they the actually names or just the initials?, Sorry! i do have RA in the top of my spine & in my toes on the same side as the tendinitis , my other foot is giving out the burning pains, so i guess things are just starting there .
Mspig-i am sure my daughter has it as well, as i well remember going on about leg/hip pains at her age, but her pain is intermittent & i feel i need to get a grasp on myself before i can concentrate on her - i know i sound selfish, but i can't seem to get beyond this .
What worries me is that this Dr is the top of his field in HMS, will a second opinion be influenced by his opinion?. If i did apply for a bluebadge, i really don't know who would support me, as my GP has no interest & the Dr said its ok

shays_mum

You should absolutely get to go to the pain clinic from all you've described, particularly if you've been diagnosed as suffering from hypermobility with chronic pain, because regular hypermobility doesn't bring it, just HMS or HEDS.[/QUOTE]

I have so far been diagnised with only HMS, the chronic pain he did'nt even ask me about, was too busy prodding me (i actually yelped when he hit a tender spot on my knees) & telling me my soft skin was not normal. Not once did he ask me where i had pain & if i was on medication (app some contraception can bring on flare-ups). I have been in pain most of my life, but have accepted it. Its only now with my upper/lower body both effected i thought i should get some help - fat lot of good it did me .
Sorry to hear your guys stories, but for what its worth i am sending out <<<<big hugs>>>> to you all xx

PandorasJar

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.

I was diagnosed with HMS (Joint Hypermobility Syndrome) last year after having battled doctors saying I was imagining it for the past 8years! Go to them and insist on seeing someone with knowledge of it. They test to see how hypermobile you are (it affects lots of things as it is a collagen problem)
Go have a visit on the HMS association website they're very helpful and have a forum dedicated to it. They can also send you a medical card if you have this, as it may affect anaesthetics among other problems.

It is much more common than believed, most people don't get diagnosed, owing to doctors putting it down to 'imagination'

Because it took so long to diagnose I also have awful flare ups, but also have very poor knee and shoulder joints. It's horrible when it happens and painkillers don't touch on it. Having been prescribed several extra strong ones. I do however find that neurofen is a godsend, although I do take a fair amount on a bad day.

Pilates is said to be fantastic for it (I can't afford!) but you are told to avoid yoga and other muscle stretching practices.
Please PM me if you want any more information on specialists names etc

P

shays_mum

PandorasJar, have been browsing on that forum, its good!, but all i can say is that i have seen someone way up there with regards to my HMS. As you said pilates is good, but expensive, yoga i can do in my sleep lol . I can only take nurofen as well, as the others make me feel weird!, i wish we could buy tylonel here

PandorasJar

shays_mum wrote: »

You should absolutely get to go to the pain clinic from all you've described, particularly if you've been diagnosed as suffering from hypermobility with chronic pain, because regular hypermobility doesn't bring it, just HMS or HEDS.

I have so far been diagnised with only HMS, the chronic pain he did'nt even ask me about, was too busy prodding me (i actually yelped when he hit a tender spot on my knees) & telling me my soft skin was not normal. Not once did he ask me where i had pain & if i was on medication (app some contraception can bring on flare-ups). I have been in pain most of my life, but have accepted it. Its only now with my upper/lower body both effected i thought i should get some help - fat lot of good it did me .
Sorry to hear your guys stories, but for what its worth i am sending out <<<<big hugs>>>> to you all xx[/QUOTE]

I don't believe contraception brings on the flare ups, but it can make some of the symptoms more dangerous. I was removed off microgynon after a severe set of symptoms wound me up in hospital, and because the progesterone one doesn't work, put on a lesser known pill with smaller amounts of oestrogen.

I finally found one pain med that seemed to do the trick (always taken in larger doses) but when I changed surgeries they refused it and gave me the 'equivalent' which cost twice as much as I had to take two types of pills and did nothing!

There are ways of getting round some situations, it's so annoying being stuck by it and I've not helped mine in the slightest taking manual labour jobs in spite of doctors warnings... and now feeling the consequences! But little things can help, heat packs at home, I often find that strapping a knee up will stop it slipping and collapsing on stairs etc.

P

shays_mum

Oh that's scary about the pill!!!, i do all the strapping, feet supports etc, been doing it for years, otherwise would collapse in a heap . I use hot packs, they are great - but its worse when your at work/driving & that's the main problem, my life is like a military exercise, i can't go shopping/stand for too long as i feel as if a massive weight has been placed on my head & that pain goes all the way to my toes . I get some really funny looks when i am hobbling from foot to foot trying not to shout out as everything, but everything seems to be anchored down & i want to just sit down before i fall down

Jojo_the_Tightfisted

shays_mum wrote: »

JoJo, the blood tests you mentioned, are they the actually names or just the initials?, Sorry! i do have RA in the top of my spine & in my toes on the same side as the tendinitis , my other foot is giving out the burning pains, so i guess things are just starting there .
Mspig-i am sure my daughter has it as well, as i well remember going on about leg/hip pains at her age, but her pain is intermittent & i feel i need to get a grasp on myself before i can concentrate on her - i know i sound selfish, but i can't seem to get beyond this .
What worries me is that this Dr is the top of his field in HMS, will a second opinion be influenced by his opinion?. If i did apply for a bluebadge, i really don't know who would support me, as my GP has no interest & the Dr said its ok

A normal full blood count (FBC) looks at things like kidney & liver function, and whether there is anaemia or infection.

ESR - Eyrthrocyte sedimentation rate - is an indicator of inflammation
CRP - C Reactive protein - also does this but isn't part of the usual fbc
RF - rheumatoid factor - not definitive for RA but a strong indicator
ANA/ENA/Anti Sm - different antibodies for different automimmune conditions

RA can be localised or systemic, slow burning or dramatically flaring. After childbirth is a common flare time, because the immune system usually behaves itself to accommodate the growing baby during pregnancy. If you have it you should be treated for it. I think NICE recommend proactive rather than reactive treatment. Whether this is just steroids (unlikely. although the relief gained from the first steroid pulse can be amazing by the following morning) or meds like hydroxychloroquine or methotrexate is up to the Rheumatologist.

Some experts are, quite frankly, idiots when it comes to personal skills. Just don't whinge about the person you saw before, try to be tactful if you are asked about him - something like, he didn't seem to be concerned about x, you imagine that's because he sees people who are worse off, but you cannot cope anymore and need something done now. That way you are less likely to come across as a PITA patient.

RA can be treated - not always 100% effectively - but it can be treated. OK, if it does get under control, then the pain is likely to be HMS related (not always so treatable, but hey, it's better than having RA pain as well)

But you have to be treated.

Change GPs as well as Consultant. Being seen by someone who doesn't assume it's your age/hysteria/being mentally ill makes a heck of a lot of difference.

I don't hear the phrase 'it's your perception of the pain that's the problem and not the pain itself' very often any more. But I do still sometimes. The last time was from a nurse. I mentioned it to the consultant (along with her gripe that it wasn't time for her double brandy yet as she finished off the previous patient's notes in front of me). Let's hope that her absence from the clinic ever since isn't related, eh?


There is hope for you, but it just takes a while to get there.

Jo xx

PandorasJar

shays_mum wrote: »

Oh that's scary about the pill!!!, i do all the strapping, feet supports etc, been doing it for years, otherwise would collapse in a heap . I use hot packs, they are great - but its worse when your at work/driving & that's the main problem, my life is like a military exercise, i can't go shopping/stand for too long as i feel as if a massive weight has been placed on my head & that pain goes all the way to my toes . I get some really funny looks when i am hobbling from foot to foot trying not to shout out as everything, but everything seems to be anchored down & i want to just sit down before i fall down

Another thing to be careful of... when I have one bad joint (normally right knee) if I go out on it, the following day my left hip and knee will be in agony from having supported it, so often worth being careful to let all rest.
The amount of times I've had comments when squeezing in a lift for one floor and it's so hard not to tell them that you didn't choose to not be able to take the sodding stairs!

Try some physio, but make sure they know what they're talking about, mine knew nothing about HMS and as such did no help! And pilates

P

shays_mum

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.