Feeling let down by doctors

[gila]

firstly 'subluxing' is a partial dislocation

re the physio- I'd say get back in touch with the doc that dxed you, as he seems to have a fairly good understanding about HMS- and it seems he needs to explain HMS and appropriate physiotherapy to the physio department that you had been referred to- as indeed for most of us physio has to be started v v v v small and done over a long time (much longer than the usual 6 visits you get for an injury etc)

you can also get a v good book which I found v v helpful for physios that have no idea "Hypermobility syndrome- recognition and management for physiotherapists" published by butterworth/heinemann, written by rodney grahame and rosemary keer.

and otherwise... take your time and have a good nosey round here- learning what can help takes time!!!!
there's soooooo much good info on here- it can all be a bit overwhelming... but with time you will figure things out!
be patient! (no choice there really... everything with HMS, be that results of physio/getting help/understanding it yourself etc etc takes time...)
xxg

[jan26]

Thank you for your help and advice, I will try to get hold of a copy of the book and have a look through,
I dont know much about hypermobility,I have been suffering with symptoms for the last ten years, i was tested for carpal tunnel in my hands when the pain first started, my hands go numb and i get a lot of pain in my thumbs and forefingers, my wrists are also weak, I was referred to rheumatologist who diagnosed hypermobility and sent me on my way. Last year I started suffering from pain in my knees and shoulders and my doctor just laughed and told me to get on with it and gave me pain killers but told me not to take too often as can damage stomac, he did arrange physio but they didnt know anything about hms and had to get info from the internet to treat me. i went back and saw a different doctor who then sent me to musko skeletal who just said my pain was caused by hms (which i already knew) .
I work part time but i am struggling because I am stood all day and my job involves a lot of lifting heavy things which makes my hands hurt, that is why i am wanting advice about aids to help easy the pain in my hands.
I get the feeling when seeing doctors and physio that they think i am making a fuss about nothing, 'its just your ligaments that are loose, nothing can be done; that kind of response but it is really getting me down.
i am going back to see a different doctor and am going to ask if there are any aids that he can recommend to help but in the meantime i will try find my way around this site and see what I can find out,
sorry to go on, its just when i try to talk to friends about this they look at me gone out as if i am making a fuss about nothing, its nice to find people who understand and can help.
thank you so much for your help x

[Jill]

jan, there's a huge topic about 'wrist braces' on this forum. And the main website has information about HMS clinics in the UK. Finding a good physio will be helpful too. There are so-o-o many things to do for your loose ligaments

[haddy]

Just managed to get hold of one of my clinic letters from a few years ago and the rheumatologist wrote to my GP saying;
" as this patient does not have a rheumatological condition she does not need to be in my clinic, but will keep her on the list to refer to physio".
I was gob smacked as I already had a diagnosis of EDS III at that point from the EDS geneticist Prof modnote: name removed, please read and follow site rules.
My ex rheumatologist is one of those who believes the condition does not exist, or if it does causes you no problems and needs no sorting out, just a bit of keep fit. Agh.
Rant over sorry! And breathe.....

[sueiz]

Jan, have you come across "Access to Work"? there's a whole thread on the forum somewhere, sorry no good at links but sure you'd find it if you used the search tool.

They will come & assess you at work, and will work with you & your employer to find solutions to your problems caused by your disability, and to fund via a grant any changes that might need to be made, then work with you & your employer to ensure the changes are put in place as quickly as possible . They work as part of jobcentre plus; you should be able to find contact details through their website. they might come up with some solutions to your problems to make life easier for you at work. I'm in the process at the moment, and only work 10 hours a week.

There's always a sympathetic response here; trying to make the medical world take you seriously often has this effect on many of us!! Because our symptoms are often complex & not easy to x-ray or measure or confirm by simple tests, and it's a case of managing a genetic condition not curing it, I'm afraid we have to make real nuisances of ourselves , and become an expert in listening to our bodies & doing what works best for us. There's a huge amount of info on here, just keep reading & posting, there's someone somewhere who'll have the answer!

Hope this is some help, take care
Sue

[sueiz]

just found the acces to work thread, it's in the social issues forum in the work home & play section

[kittyo]

i am currently havin 'physio' via nhs .... basically they give me exercises to do to help tighten up .... feel well frustrated not really helping with pain so i got really upset didn't really realise i was going to but it was just the whole frustration i am now having accupunture findind it quite good so far but who is supposed to re-lighn my joints which feel well 'out' now.
my thumb is doing alot better but my work are not happy about how much time i have had off and want to write to my doctor etc its made me very anxious and stressed like they think i making it up.

i have used wrist support and felt they can be useful keep your chin up and ask about hydra therapy, accupunture, cupping these are all on nhs now

[steph2142]

Hi! my name is steph im really new to this site so sorry if i babble or do this wrong modnote: don't worry about it, we were all new once

i was diagnosed with HMS 3 years ago and have been deteriorating rapidly ever since. it started off just as a few joint niggles and pains, i played a lot of contact sport and incurred many injuries but i never thought anything of it, i felt really patronised by doctors and physios when i told them the excersizes and treatmant wasnt working and i was still suffering many dislocations and was in a lot of pain i felt like they didnt even believe me.
I was sent to a musclo-skeletal specialist who diagnosed me with HMS and told me that physio wouldnt work and there was nothing they could do for me.
I have been to many different GPs and physio's over the past 3 years wanting a proper diagnosis as to which kind of HMS i have as i have consequently found out there are quite a few like EDS and such, but no-one has ever given me a proper answer. I go to the doctors they run a few blood tests tell me they dont know why im in so much pain and just pump me full of drugs.
Its gotten to the point where i cant get up and down stairs easily, brush my hair or even carry a pint of milk home from the shops, im only 18 and i feel like im loosing my independance and no proffesional seems to want to take the time to help me iv already lost too much to this and i cant take anymore.
please can someone tell me how to get my doctors attention or if they know anyone or anything i can do to help this.
Im in constant pain and im at the point of giving up i dont know what to do anymore.

sorry if that sounded really depressing but i needed to vent and i thought that the people on here might understand

any advice or words of wisdom would be greatly recieved

thanks
steph xxx
modnote: merged, please add to existing threads where possible

[Stone]

Hello steph, and welcome to the forums

Although you've already been diagnosed with HMS it's not true that there's nothing they can do! It is possible to build us back up with careful medication and physio, so it's a bit disappointing that you've been left to get on with it. Our usual advice is to get your GP to refer you to one of the specialist clinics - there you will be seen by a consultant rheumatologist who can thoroughly diagnose you, rule out any more serious problems and think up some sort of action plan. You should probably do this sooner rather than later - as you've found it can be a bit of a spiral of doom if you just leave it alone! It's becoming generally accepted that EDS3 or HEDS (that is, Ehlers-Danlos syndrome hypermobility type) is the same thing as benign joint hypermobility syndrome or HMS - but they should rule out some similar disorders like Marfan's.

If your GP isn't sympathetic you can ask to see a different one at the same practice if you want, or even change practices - the process is pretty simple. Usually the hardest part is writing down the past history on the application form, well it is for me anyway They should be fine with referring you elsewhere, though the waiting lists can be quite long. Give it a go anyway!

Best of luck.

Stone

[sueiz]

Hey Steph,

Firstly, a great big & gentle !!

so sorry to hear how badly you're suffering, both from HMS effects and from inconsiderate medical bods!

I think you're doing the best thing possible to help you manage - by getting involved in this here forum, you'll be able to become your own expert & find all the support & advice you need right here.

I'm kind of in the same place as you at the moment, having llost almost all my mobility over the last 6 months or so, and I'm 43, but I can't imagine how much harder that is as an 18 year-old who in the eyes of the world should be carefree and fit as a fiddle....

hopefully you have family, and a group of good mates you can lean on (literally I suspect some days!) and there's always a friendly ear here. Read up as much as you can, and keep pestering politely down at your GP's. there's a great thread here somewhere on how to be assertive with your doctor. you have a right to good care; you have a condition which needs managing, not ignoring!

I would also advise you to get in contact with your local social services, and ask for a home care asessment. if you are struggling with personal care, and managing stairs etc, there is lots of help available through them; I've got extra grab-rails & stair handrail fitted, and there are all sorts of gadgets which can help you keep some measure of independence. It might also be worth while applying for Disability Living Allowance; if you do, make sure you answer the questions as if it's your worst day; it can help to ask somebody who sees you on a daily basis & whom you trust to help you be completely honest with yourself; I'm in the process of this at the moment, and to be honest finding it really hard to accept just how limited my life has become; it's taken me 4 months to stop crying every day and come to terms with using a wheelchair every time I leave the house.

There are still plenty of tears, but I've decided I have to face this challenge; I have no choice, I'm still me, I still have a life and loved ones, it's just a different road to the one I thought I was on, i've decided to embrace the new challenge and use it to help others.

Love & hugs, hope you're able to smile thro the tears, take care
Sue

[Lollypop]

Hi, hopefully i am placing this post in the right place.
I have recently moved and after a set of bloods done, this morning I have had the second appointment with my new gp, she has explained that she has found me to be anemic. I am now on those nasty meds for the next 3 months. Anyways she carried on to explain that she has a couple of young children/teenages with hms and she only offers sick notes for accute joint problems.
I am on pain killers and some other stuff for months now as I woke up last january in pain and have been ever since. I said to her i was in pain but not no where near as bad when I was a teenager. and feel that it's wrong to just assume we are all the same.
No doubt pushed for time, i just feel so depressed. If If I don't take my pain meds I can't get out of bed at all. I can't handle it anymore. It's not fair to be like this, I feel like someone has taken my life away. I can't even have a drink anymore without taken my meds at the same time, or I end up in agonising painthe next morning.
I keep wondering if it is possible that there is something else wrong with me because I can't understand why my body hurts. I feel so alone. I am scared because everyday it's something else and if I haven't sublexed or hurt my nerves somewhere I feel like why am I on this medication. Then I try to come off them, then I am in sure agony again.
Sorry for the moan I just need to express myself
Lori .

[Lola]

Hi all HMS-ers

I just wondered if there is anyone else like me out there who has been diagnosed and sent away with nothing?? I was diagnosed 2 years ago by a physiotherapist after going to her for painful hips but I didn't really understood what Hypermobility Syndrome was or what it meant. Since then it took 2 years for my Doctor to officially diagnose me. Thinking that things would start to get better I felt instantly relieved until he said "There's not much I can tell you apart from do a lot of exercise to help build up muscle strength to limit your chances of injury. Bye." Since then I have had no pills, no physio, nothing.

I have pains in my knees, hips, ankles, toes, elbows (recently started there), shoulders, neck and back. Out of all of them, my back is the worse. I have pain everyday in the thoracic area of my spine and it is unbelievably stiff. It has got to the point now where I have to stretch backwards every 10 minutes or so, every hour of every day of every month of every year, and when I do this it cracks really loudly in the joint. I then have temporary relief for about 10 minutes before I have to crack it again. It has started to get even worse also where even if I turn round sideways it cracks. Obviously, I don't want to live my life like this! Because of what is happening I have pain across my ribs and all the muscle around this area is stiff and knotted.

I just wondered if anyone else has any similar problems with their back like me. Knowing I'm not alone will make me feel a little bit better! But also, does anyone take any medication for this kind of thing? I know you can't be specific and tell me what you take which is fine, I'm just curious to know if there is anything any of you are taking or doing to manage your pain.Especially if you have pain in the same place as me as it will give me hope to know that I don't have to carry on with the pain as I am. And also, it also means that I will know that I will have the right to go and moan again at my doctor to help me!

Lola
modnote: merged

[Stone]

I have very similar back trouble in my thoracic spine; it doesn't cause muscle problems (yet...) though. I've been disappointed with all the pain relief I've tried (codeine, amitriptyline, with and without paracetemol and ibuprofen) and although it helped some of the sharper intermittent pain nothing touched the deeper, more gnawing ache.

That is, until I tried tramadol and woke up after the first dose with my back just feeling like my back. It felt magical! I don't seem to be getting many of the nasty side effects either (just dry mouth really) so it's been an amazing difference. I'm on the sustained release pills so it gradually seeps out and lasts all day - you just take them every 12 hours.

So, maybe you could give it a try? Even if it doesn't help you there are lots of different drugs you could experiment with and one of them should help. See if you can get referred to a local pain management clinic as a combination of physio/psychology/medication is a good way to attack it from all sides.

Best of luck

Stone

[Spireite]

Lola, I used to have terrible trouble with my thoracic spine, amongst other things. Mine was totally rigid and my lung capacity test was unbelievably bad, I'm sure because of it. It was all but impossible to even get a needle in my rock-hard soft tissue. Of course there are things to try. Have you considered denervation, or botox? I've had all my spine denerved and botox is my favourite poison. After botox to my thoracic spine, I was absolutely amazed at the difference it made. I suddenly had thoracic rotation! Staggering. So I had it all denerved, which lasts a bit longer (year or two). Now I've progressed to having prolotherapy to address the underlying lax ligaments. Two years later I still have thoracic rotation although I do crack my thoracic spine and ribs regularly throughout the day.

Most doctors are pretty useless, but this forum isn't.

[Itigo]

Hi Lola, I hear ya! My thoracic spine is shocking. I am not yet diagnosed (surprise surprise) but my physio and remedial massage therapist think I have HMS/HEDS. I have a thoracic scoliosis as well. My physio gently manipulates my back most weeks and yesterday included massage as I did something else where I couldn't breathe without excruciating pain in my rib area! He has been known to exclaim when working on my back "Oh my gosh it's as tight as *&*&#^#%^% here" which made me a bit nervous actually!I don't like pills and try to manage without (I'm stupid I know and am starting to realise I don't have to live in constant pain any more!). Nothing much works any way, Brufen and Panadol wise. I'm allergic to codeine and heavier stuff scares me!

I am seeing a Rheumy next week, hoping to get some answers and help (well I can hope........).

Just wanted you to know you're not alone. Maybe we should keep in touch to see if either of us comes up with a solution?

Take care

Itigo