Feeling let down by doctors

[gila]

ello serenity ... and big
what gets me most about that doc ... is not so much what he said but what he DIDNT say/do...
he might be right re "you need to do more", he is probably right re "you need to accept your pain and (I'd say TRY ) to work past it"
but just repeating this ad nauseam is pointless and really NOT helpful -and yep it feels utterly patronising from someone 'non pained/ with no idea what it's like'...been there... and felt angry, annoyed, not understood, desperate, stuck, lost...

what would have been helpful... if he'd given you some ideas/explanations/help HOW to maybe achieve this !!!!
(and showed some understanding that it is soooooooo NOT easy and that it can be a v v v v v slow process, v slow to show any significant results...)

the idiotic thing that really gets me is that 'pain clinics', which sounds like they deal with 'everything' to do with pain, actually dont seem to deal with/do 'chronic pain management'
for that you need to try and find/access a 'separate med entity'- and worst- like in your case... the pain clinic doesnt even explain this/refer you or at least give you some pointers where/how you could maybe self educate...
xxg

[paul318]

I'm not sure this is the right place. I have seen m GP today about getting a referral to Prof G, but he said he couldn't refer me I will have to go through my local rheumatologist. I got the usual eyes rolling back. Which is his usual reaction to any request for further consultations and tests. I felt very foolish and regretted pushing things again. I didn't back down though this time. He said 5% of his patients ave hypermobile joints and there is no way he would refer them on to Prof G. I did point out that not all of them have other symptoms. i told him there are other symptoms in HMS other than hypermobile joints. I told him about the possibilty that because of my spondylosis and hypermobile joints there could be an encroachment on my spine. i told him how much my posture changes things and if I slouch my walking goes, if I keep my neck straight I can wlk and move freely. The look in his eyes told me he thought I was fooling myself. He said that there cannot be any encroachment on my spine as it didn't show up on my MRI. I told him what I read on here about upright MRIs showing abnormalities in the spines of people with HMS that don't show up laying down. He was interested in this. He has asked me to send him info about HMS so he can read it ( links to articles welcomed) and pass it on to the local rheumy. He will refer me to him/her. Of course the problem is will they have any knowledge of HMS.

I am left wishing I had never brought this up with him. I did tell him how I thought he is dismissive of me. he could not see it and trie to justify himself. I just find it so frustrating. He doesn't seem to see what is the use of getting an explanation for a disability that has robbed me of so much, if there is no cure. He doesn't seem to understand that knowing what is wrong is half the battle. I need an explanation even if there is no cure, and I need help managing it. Besides that, there are people like the DWP to deal with. Sometimes I feel like giving up and crawling into a hole.

[AnnaH]

Doctors keep remarking on how anxious I appear (I'm scared of doctors, due to PTSD from childhood experiences in and out of hospital). I've explained the reasons until I'm blue in the face, and would much rather they ignore my anxiety during the consultation, instead of endlessly pointing it out.

For instance "My pain is keeping me awake at night".

"Yes, well you are very anxious"

I'm not anxious because I've pain at night (I know why it is, even if it isn't very pleasant) so why the four-and-a-half do they relate that automatically to my anxiety during consultations?

Or "I keep feeling dizzy and fainting".

"Yes, you seem very anxious about that."

Do I really? (/sarcasm mode on maximum). Well I wonder why? Perhaps the fact that I fell down the stairs and dislocated my tail-bone might be one little reason I dislike fainting, or the time I was crossing the road, or when I fell into a display stand in a shop, not to mention the embarrassment when I do it in public. I am slightly concerned about why I faint so much, but I'm assuming it's possibly POTS so I'd like some testing and maybe, if it's not too much trouble, some treatment could be in the offing? Or is that just when I stop being anxious about it?

Haven't they read Douglas Adams 'Hitch Hikers Guide to the Galaxy' in which he states that it is a well known fact that the best way to start a panic is to tell people not to panic. If someone is anxious, don't flipping point it out to them, as if they haven't noticed and go on about it as if it causes HMS. I once thought that if I had physically apparent symptoms to point out, doctors would stop doing this to me, but in reality they just carry on blaming everything on the fact that I'm anxious. Which of course makes me more anxious, and more reluctant than ever to seek medical advice, even though I have a lot of things wrong with me and so need medical support regularly.

I think what really riles me about this (apart from the fact that I see it as mental health prejudice) is that I believe I actually cope really well with some pretty devastating health problems. I am not the worst HMS sufferer I've met, but my symptoms are not minor, and yet I've managed to get a degree, do charity work, care for my disabled son and support various disabled or sick relatives. I don't just sit about groaning in pain and moaning that my life is over - I push myself constantly to keep going. It would just be a bit nice to have that acknowledged by doctors occasionally and stop making me feel embarrassed about my doctor-phobia.

[Triality]

The most ironic thing about that is that anxiety is actually a *symptom* of HEDS/HMS!

[madmum]

Had words with one of the practice nurses yesterday. My son had a horrible fall on sunday and hit his chest. Threr is no bruising but lots of pain. The chiropractor is concerned in case he has a fractured sternum. Nurse told me it is not worth worrying as all they do is give painkillers! Telling a parent to not worry is ridiculous(especially with a hms child). She seemed not a bit concerned he may have more issues due to his hms. Today he still hurts....do i have to spend 4hours in casualty?

[Lou]

I've been patronised by both sadly, including my female GP and a female rheumatologist at the Homerton. The latter was so appalling that she not only implied I was a hypochondriac and stressed out, but told me to 'get out more', asked me whether I have many friends and asked about my family relationships!!! She also said 'you're SUCH a pretty girl, you should live your life' three times to me - I am 35 years old and guess she was about 10 years older!!! I told her I in fact have lots of friends and a busy social life but she acted like I was lying! I couldn't believe it!! This is after she diagnosed me with 'many hypermobile joints', flat feet, hip bursitis and scoliosis. I asked her if I had HMS and she said no, after not examining me and not asking for my history!!

I then had to ask my GP to see another rheumy and she read her letter and asked why - I told her I believed it was HMS not just hypermobile joints, and I had confirmed this by extensive research via google and named some of the symptoms to her. She replied 'ah but googling it can make you believe you have anything' ARGH!!! I insisted she refer me to UCHL and she did so grudgingly, and last week I was seen by the most lovely man who listened to me, sympathised, took a full history, examined me then diagnosed me with HMS/EDS3 - VICTORY!!!! I am debating whether to complain about the first rheumy, what if the people who see her in the future aren't as pushy and confident as me and suffer for the rest of their lives?

[madmum]

took my son to casualty. The triage nurse took details and when i said he had hms she said oh so he is overactive then! They are supposed to be trained?!!!

[gila]

ello lou - I think it would be great if you "informed" the rheumy deptmt AND PALS at the homerton that it might be an idea for them to brush up on their knowledge re HMS/EDShypermobility type ...
xxg

[LazyHaze]

Hello,
I hate my doctor!! I see any one but him which really disrupts the on-going treatment I'm getting from everyone, he makes me feel so small when I suggest things, my OT told me to ask him about getting a blue badge, I then saw him I asked him, and he pulled a face and said "you're a bit young, I'll think about it", like I'm some kind of child asking for a lollypop. Yes i am only 23 but I'm also a bit young to have equipment help me on and off of the toilet . Now I've got to make another appointment as plead my case to him that I can't walk far (with out crutches) and my shoulders fall out when I'm carrying anything (I did by a granny trolley and it helps loads, I just look slightly insane). They don't understand how much it takes for some people to go to them and open up how bad they're feeling, it's horrible being dismissed when you in pain with "you're young and fine, live with it", every one else I've spoken to have been really helpful and understanding so I know I'M not being and idiot.

[matildasmummy]

hi

I have just been to see my local gp to ask to be referred to a rheumatologist as I'm in increasing pain with joints and back with weakness in knees suddenly occurring with no warning. He looked at my daughter last week and said he thought she also has hms.

When he saw me he look exasperated like he was sick of seeing me (been to doctors for pcos and weight issues and also daughters knee a few times in last few weeks) He asked me why I thought i needed to see a rhumy and when I told him I had spoken to a specialist clinic in sheffield and she said I should ask to be referred to rhumy and to get genetic testing and also that my podiatrist (who happens to be my sister in law) said the same he said well I don't think they can do anything for you so im not going to refer you!

He made me feel like a complete idiot for even asking and I just wanted to cry. He didn't seem interested in the symptoms I was presenting with and said he wasn't even sure what the genetic testing department could do to diagnose. I now feel like I shouldn't go to see the doctor for a while and maybe its all in my head. I don't want to have to go through what my mum did when trying to get treatment for my daughter. When I was younger it was made out that there wasn't really much wrong and to get used to it.

I just feel so frustrated and angry and upset and embarrassed all at the same time. Im so tired all the time and I feel so deflated that no one wants to listen. I shall just have to pray that when I finally get a physio appointment through which I had to self refer to that she or he will see there is more problems than just a sore back and hopefully i will get some help.


thanks for listening to me rant

p.s i did search for a previous post to add this to but couldnt find anything specific sorry

[Tilly22]

Hi everyone
Before anyone reads on, I will warn you all that the following will be a bit of a rant , oops, apologies in advance guys!

Well as some of you may know following my previous posts, I was diagnosed with HMS in 2007/8 by a Musculoskeletal prof. and was given no information or support/guidance about the condition.
Over the past few years, my condition has become a lot worse than it was when I was first diagnosed (hips, knees, shoulders etc.)
I visited my doctor who has been prescribing me Co-Codamol {mod edit - dosage removed, please read the site rules} for the past 3 years.

Here's where the rant begins...

After recently feeling that I have no control over my hypermobility and being in a lot of pain, I visited my GP to see what steps I could follow (with the hope he actually understood what I was talking about.)
After speaking to him he then said, "who has told you you have Hypermobility Syndrome", I then told him it was the lady he had sent me to see back in 2007. (He couldn't even remember this!)

After looking through my records he told me that the physiotherapists/musculoskeletal professionals had not sent a report following my diagnosis so basically there was no indication that I'd been diagnosed at all.
That then led me to question - why all these years has my GP been prescribing me high doses of Co-Codamol with "no diagnosis".

He then sent me for all sorts of blood tests etc to test for arthritis before referring me to a rheumatologist at my local hospital.
Before my referral he called me into the surgery and told me that it would take somebody "very highly medically advanced" to even begin to convince him that I did have HMS .
I questioned as to why he thought this, his answer really annoyed me, he stated that because I couldn't touch my arm with my thumb and because I was in so much pain that no way could this be Hypermobility. I was really frustrated with his lack of understanding, especially when he told me that hypermobility doesn't cause pain is this man seriously deluded ?

Thankfully I've recently had my appointment with my rheumy, upon arrival he asked me lots of questions and just by touching my hands told me that my doctor was very wrong. He said it's definite Hypermobility and seemed to know lots about the condition. Since I was diagnosed in 2007 I've researched a hell of a lot about HMS and a lot of what I've learnt he mentioned when talking to me, which was a big relief!
He said he would send a letter to my GP with my diagnosis and I'm currently awaiting a letter from both himself and my GP about what I can do next to help, (which I know there's not much I can do to change the way my body is)!

I was really disappointed with my GP's lack of sympathy/understanding of hypermobility, I was even more disgusted that he was completely oblivious to why I've been taking painkillers for the last 3 years! I just wish there was more people available that understood the condition, that's why I'm so grateful that this forum exists!
Sorry for ranting on and on but I've just been really let down and no longer have any trust in my GP. I'm just relieved it's finally on paper and I can start doing something about the pain, other than popping pills !

Thanks for reading, anyone who has had any similar experiences feel free to share, I'd appreciate hearing your stories!

T x

[shirleytx7]

Sadly this is very common they assume as they have no knowledge it doesn't exist. It just totally floors me that so many people suffer with this condition and it is so chronically under diagnosed.

[Kattykins]

And the sniggering and snide comments together with the condescending attitude all go with that ignorance too!

Sending hugs!

[Tilly22]

Shirley - I totally agree. My doctor seems to believe hypermobility means you can just "touch your arm with your thumb" and if you can't do this then you can't have HMS, what a joke.
I can't that believe that many of us on here really suffer with this condition but yet many doctors just don't have a clue - irates me!

T x

[loosebones]

My doctors surgery is normally really good but yesterday took the biscuit!

I went to see the nurse as my toenail is infected. Once she had dressed it I got off the bed and my ankle dislocated. She just ignored me when I said I couldn't get it back in and needed some help. Eventually she had a look and got the Dr. He looked and said that he wouldn't call an ambulance as they wouldn't blue light me as it wasn't serious so they would get me a taxi. I was in agony by then and in tears. I was sent into the waiting room to wait for the taxi. While there the receptionist came round and started turning the lights off and closing the blinds. I said to her 'I'm sorry, am I stopping you from going home?' to which she replied 'yes, but we'll go home anyway'. I almost told her that I would just wait outside as she clearly didn't want me in there. The taxi came and I went outside with him. No offer of help from the receptionist. The Dr and nurse had already gone home. I was so cross with the receptionist. It doesn't take much to say a few words of reassurance to someone who is clearly in pain and upset.

I got the taxi driver to drop me off at mums house as the traffic was so bad and I wouldn't be able to afford all the way to the hospital. When I got in the house I just burst into tears at what had happened at the Drs. Mum took me to the hospital where I was taken straight in but then left for 3 hours with no pain relief and a foot that was going more and more purple. Unimpressed we finally got the Dr to come and see me who said that because it was after 9pm they couldn't manipulate at that hospital. I did point out that I had been there since 6pm and that if someone had come and seen me sooner then we wouldn't have had that problem. He finally gave me some pain relief but then said that I would have to come back to fracture clinic the following day. Er.....NO! Not with a dislocated ankle. He got quite cross and said that he coudn't do anything but he could speak to another hospital and see if they would see me. To cut a long story short I ended up going to Brighton hospital where they had big problems with the notes from the previous hospital as the Dr had been so unclear and just said that I had declined any treatment. I was finally relocated and out of pain at 2am. 7 hours after going to my 1st hospital.

I've never been treated like this before and I'm really upset by it all. Especially with my Drs surgery as they just ignored me and couldn't wait to get rid of me. I am really thankful for the guys at Brighton hospital who finally got me sorted.