Feeling let down by doctors

[boss5]

went to hosp today with chest pains . a doctor come in saying i see u have eds do u mind if i have a look at u as im doing a exam on it .
i thought this was a bit roude but also understand they cant learn if never see it .
he look at me for all of a minute said well your not that bad are u i can nearly do what u can do .
i get top marks on beighton score tops marks on fibro chart i have hypermobility fibromyalgia eds type lll scoliosis ibs and more
am in constante pain mostly housebound.so he walk out having told me my eds wasnt that bad then when the nurse come back we asked how long
till the doctor come about my chest pain?she said he has been i said when she said he was just in here. i just wanted to cry he was meant to come in to sort my chest out and just come in to help him self then discharged me saying the chest pain was related to the fibromyalgia im so confussed and still have pains in my chest i just dont no any more .............
from kelly (boss5)

[jax]

Sorry to hear you got treated like this! I have also gone in with chest pains many years ago and told
it was anxiety!

Best wishes

[Ali13]

Sory to cross post here but...

Went to a GP yesterday because my collarbone is sticking out and has been for three days. Before he even looked at me from his computer he said 'I think you'll be fine.' After looking at it briefly (and not even the area of my collarbone in question) he said 'It happens.' I asked him 'Does it happen to you?' and he said no.

He ended the appointment with 'I expect you'll live.' And sent me on my (very angry) way.

I don't know if I've ever been so angry in my life and thats saying a lot because I suffer the rage quite frequently!

Patronizing f*%@?r.

[jax]

that's terrible Ali - didn't even check it!? sorry.....

[Ali13]

No, he pretended to check it in the form of jabbing his fingers really hard into both sides of my collarbone saying 'Look. It takes quite a lot of damage.' while I'm like 'OWW!'

[Blaadyblah]

Grr- I tend to find that the local minor injuries unit are far more helpful than a GP when there's an acute injury. Even so that's an appalling way to speak to you, you really should complain to the practise manager.

[jax]

that is shocking Ali- double grrrr.

Maybe you should make a complaint about that one but try look after yourself
in the meantime.

[Chloe♥]

That's more than awful, Ali!
I think you should make a complaint, and from now on see if you can get yourself under the care of a different GP.
I don't know what makes some doctors think they don't even need to have the common decency required in any other job.

[Cath]

Hi all, well I'm so angry After many months of waiting to see the rheumy consultant instead of one of his nurses or his registrar I had an appointment with him yesterday, the consultation lasted all of 5 minutes during which time he laughed when I mentioned that the local physios they had sent me to see had said they had never heard of HMS and he said that was rubbish!! When I mentioned that I am struggling with the futura wrist splint as it doesn't help me at all with cooking (which is what I was given it for) as I still can't managed lifting pans or removing something out of the oven, his response was sarcastic to say the least, suggesting that the only way to give total support to the wrist would be a cast!!! I also mentioned that I do find the splint useful for when I am driving but that it has caused me to have a really nasty flare up of eczema on the back of my hand and the underside of my forearm he just said well don't wear it then!!!
He then said well it seems that you can manage to do everything for yourself, when I replied that I often struggle to get out of the bath and can't do proper cooking by myself or that on bad days I really struggle with the stairs he just ignored me.
I asked if he could exclude that the HMS I had did not have any heart problem involvement and he just laughed and said 'well you really don't look like you have Marfans or EDS'. Well I know I don't have Marfans but I wasn't aware that there was any specific 'look' for EDS. He has conceded to send me for an echo to rule out any heart involement.
I also asked if I should be more concerned about osteoporosis and he said not at all there is no evidence that you would be more likely to get that because of HMS. He quickly did the beighton and said well you only score a 7, the gp letter said you were a 9......... so what that doesn't make the pain I have any less!!!
He ended the appointment by telling me that this is just something that you have got you just need to get on with it exercise and take painkillers.
Sorry for the long post, this man just made me feel like the doctors I saw as a child did, that I was wasting their time and that there wasn't anything really wrong with me.

[Eloise]

Cath - grrrr

I had a very similar experience with the local rheumy where I live - basically told me all my pain was depression after making me do silly tricks that weren't even in the Beighton scoring system!

I see it says you are the Wirral - so my advice would be - get a second opinion - go and see Prof Bird in Leeds. He is good and will take it seriously to rule out other possibilities such as Marfans. (He does think there is a difference between HMS and EDS but agrees both can cause pain and problems equally - just that it is skin involvment that is different).

Osteoporosis - yes there is a link - my local Bone Scanning unit told me they know about the link and are willing to even check 16yr olds out for it (and us older people as well!).

[Cath]

Thanks for the reply Eloise. I have already seen 2 rheumy's, one here on the Wirral and one over in Liverpool, who was much nicer but of the same opinion, that I have HMS and I should just get on with it, although the guy in Liverpool had a much bet ter bedside manner. Most annoyingly is that I am a nurse by proffesion myself and had I seen a patient seen like that by a doctor they would have had a dressing down from me, bit different when you are on the recieving end and are desperate for answers. The top and bottom I believe is that these consultants don't like to be challenged when seeing someone with a condition that they aren't in anyway familiar with, I'll bet he would have been lovely had I had RA! Anyway I will have a think about it over the weekend and maybe go see my gp next week, at least he admits to not knowing much about the condition but is always as helpful as he can be and has so far helped me with all of this. I may ask him about a referral to the local OT dept to help out with my problems in the kitchen.
As I said earlier, I am a nurse and was hoping to be back to work by now after my son's birth (he's 2) I just can't see me being able to cope with nursing the way I am, and also knowing the NHS as I do, disclosing the problems I have would likely put paid to a job offer anyway!!

[barkingmad]

Hi Cath,

i was a nurse too and had to give up when dislocating my elbows during CPR and control and restraint. I really dont whether it is best to tell the NHS or not, eventually my medical team and hubby talked me into retiring which at the time was a huge blow, but now I am so glad I did retire...i can honestly say there is life after the NHS!!! I miss my patients but not the paperwork, politics and flipping risk assessments for everything!

I hope things work out for you too and you get to go back if thats what you want.

[Cath]

Thanks for the reply Barkingmad. I think one of my concerns about going back to work in the 'caring' profession is that I would likely experience more patronising! Well I will have to think about things some more, not really all that bothered about going back to work at the moment, enjoying the time with my son, but finances may take the decision from me soon!

[Ali13]

Cath that's horrible! What an a!!?%Le!

Sympathetic hugs

[curlysue]

Cath -

As Eloise said, seeing Prof Bird in Leeds for a 'third opinion' in your case would be a good idea I think, as he is an expert and has a great bedside manner to boot! Perhaps if you explain the situation to your GP and impress upon them that you need to see an expert, then you could persuade them to refer you to him. I think it would be worth a try.

CSx