Feeling let down by doctors

[shah]

Luike everyone else YES I hate going to the drs, they dish out pills but don't really listen, after a bout of depression I'm treated like a child despite everything which makes me upset. I have been told countless times its growing pains, I'm 29 for goodness sake, if I grow now I'm selling myself to science!! Other than that the response has been well we can't do anything! Physio is ok but often the exercises are simple repeats of themselves and are run at times I can't really make. I guess as well I feel so cheesed off with hearing put up or try this try that and no real help or understanding that I have stopped going and just try to cope myself as best I can, I just hate it when my other halfs standard response is go to the drs

[anna]

Yes I sure have been patronised on numerous occasions, but I have come to the conclusion that this is what they do when they don't know what to do. Having seen a lot of sides of the NHS over the last few years due to a number of family and friends with severe illnesses I see, unforunately, more and more of how the NHS seems to be governed by politics - for example - an adult over 75 with cancer is only offered palliative treatment where one in her 40s is offered a choice. I am fortunate in that my GP and I agree that less is more and I don't want to be on some of the enormously strong meds that consultants have suggested I should take because they can cause appalling sideeffects (I have more problems than eds). It would appear that this GP has a quite independent brain and is willing to search for solutions. On more than one occasion he has said things like 'Give me a week then phone up and see if I have found the appropriate clinic and/or treatment' And he always has a suggestion or a jolly good reason for his decisions. But this is quite rare - I think a lot of GPs are very bound by their budgets and the rulebook and they HATE it if they are wrong. The thing is, medical science isn't perfect but some doctors act as if it were. Therefore this is bound to cause a problem.

[Deb72]

I have an appointment with my Doctor this morning, which I am dreading. Sometimes she's really good and sometimes she treats me like I'm a right numpty. I had my pain meds upped two weeks ago because I wasn't coping well, they have made little difference to my shoulder pain but have stopped a horrible pain I was getting at the base of my skull, I'm crying a lot because of the pain I'm in and am also feeling washed out and extremly tired even though I have started sleeping better (getting up at 3am instead of 1am) I'm worried that if I tell her this she'll just label me 'depressed' and give me a whole set of new pills. I'm also off work at the moment because of not coping well with this shoulder pain.

[bree]

Hi Debs

I can really sympathise, it so hard when your trying to help yourself and not getting any help/empathy from GP's on top of all the crappy pain. Have you tried finding another GP or maybe trying in a non confrontational way to educate your GP by giving them an info sheet about hypermobility. Do you have a good rheumy dr who could help you?

I have had years of awful GP's, but finally found a good one whom is thankfully back from mat leave soon. I booked a double appt with her ( heard good things about her from my sister), and basically told her how it was. It was through her I got my second opinion and diagnosis. Totally understand about been labelled a depressive too. I found that my medical notes said I had depression, which I don't have and I have since got this removed my notes due to inaccuracy.

Hope you get somewhere with your dr or maybe another one. Sounds like you need more support. Maybe you could bring a friend/relative to your appointments as well? Good luck.

[lil_miffy]

My gp has pulled the final straw
I ordered my repeat perscription with boots who pick it up and deliver my meds to my flat. my main painkiller had been reduced by gp without telling me from 2 tablets 4 times a day to just 1 at night! the dose i was on only managed my pain on average days and was useless on bad days so i was dumbfounded how he expected just 1 tablet at night to have any effect.

I phoned the surgery to find out what was going on but my gp wasnt there so the duty gp spoke to me instead. He said there was nothing on my notes to explain why my dose had changed. He said that my rheumatologist has said in his letter to my gp what minimum dose I can manage on (which is what i was on). He also said that although they don't like people being on the pain killer long term, specially younger people, the level and type of rheumy problems I have mean that i couldnt be expected to function on anything other than a decent dose of strong pain medication.
He changed my dose back up and even increased it if I need it.
I was so scared before I phoned that i woulndt be able to get it changed back again. If i was only allowed one tablet a day there is no way i could function the level i do now (which often isnt brilliant at the moment). Im still hopeful the funding can be found for the art job Iv been offered but without decent pain managment theres no way i could work.

Im going to see the gp who was on duty when i phoned when i next need to go to gp. Iv seen him in the past for none-eds stuff but he seems much more understanding of pain and complex issues from what he said on the phone.

And my orthapaedic dr has cancelled my appointment with him 3 times now, once i didnt find out till i turned up for the appointment, and the rescheduled appointment i got a phone call 5mins before I left the house to go to the appt to say he had cancelled me again.
And my physio reffered me to the pain clinic over 6months ago and i still havent heard anything so whether iv actually been reffered i dont know. Don't move to my town if you have eds and want and easy wide when it comes to healthcare lol.

[rosielee123]

hi, just wanted you to know your not alone with this let down feeling...
over the last 5 years i've had many pills many referals / injections / physo / accupuncture / hopes, i think what we all need is some one to be with us at referals appointments just to let these dr's know the extent of our suffering and sometimes (personally) i give up right there in the room i get choked and cannot speak in fear of the floods of tears due to frustration i guess.
had the diclofenacs they cause me upset due to reflux (acid)
had the many pills that cause the foggy head n lack of consentration i find it best to take such medication early evening.

take care x maria x

[rosielee123]

well now theres a topic, to be completely honest every male gp/specialist i've visited has been supportive yet not understanding explained some things to their abillity like my dr says he is no expert on my condition.
but whenever i have seen a female gp/specialist they are darn right b***h telling me my condition cannot possibly get in the way of my day to day tasks go on a diet this will help exercise do this do that generally unhelpful attitude telling me to do things that will cause me great pain unbelievable.plus i'm only 38 blah blah
as recent as yesterday i went to see a dr @ seacroft hosp pain management now the last time i was there (last year) i was sent for accupuncture great i tho some 1 is actually helping or trying to, my next option after this was epidural injections so i went yesterday with the expectation of being refered for this treatment now i know its good and helps cos my mum & bio father have both recieved it, but no i get there ,female dr, and quite basically get told i'm too fat i need to loose weight this will sort my pain out , i pointed out that b4 my pain i was very active i walked a heck of a lot i was a nice size 16 but since my deteriation i have plummeted to a size 20/22 not because i over eat because i cannot exercise, 20 min gentle work out and i'm in severe pain for days ( hell on earth) so my very unhelpful specialist dr said theres nothing she can do for me i need to loose weight ( catch 22) oh she can send me to a psychiatrist thats miles away.. gggg thanks so u think its in my head now ??? oops is there nothing on my xray results that got me here in the first place!! cognitive behaviour therapy wow i did my degree in counselling years ago i know how it works.
then asks me if i want to go to physio wat again omore hell on earth last time i was covered in bruises cos the therapist was pushing on me so hard trying to find the pain spots eerrrmmm its movement pain not something you can touch.
ah well i'm sorry you've had such an ordeal with male dr's i've had similar with female's

take mucho care of yourself x maria x

[realrosie]

Patronizing? I live in America where the disabled are asked to tighten our belts & do without. Anyone else out there so super sensitive? I can't bear to wear a belt. Because of the privatization of our learning institutions,we have lost our access to affordable medical care. Hypermobility is not a problem the Drs. "believe in" I have been disabled my whole life.. But, I have rare disorders. Not understood and not approved of. My favorite out of around 100 Drs. Dentist,oral surgeons who have patronized and then booted me out as quickly as you can say "Auurrrrrrrrrgggghhhhhhhhhhhhhh," was an oral surgeon who said(and I quote)" To have torii is rare.To have such growth and to need them excised is Exceedingly rare!"........he turned and left me there (in my shame I guess).I am considered [middle age woman with depression,drug seeker ,poser]I was once accused of Hitting my leg with a baseball bat,in order to obtain drugs.My leg was having a great trauma of unidentlified tomourus lump in calf. ..I'm 52 and I have been dismissed.Peace!

[meggy.nut]

I was told (via the patient advocate) that the physical medicine doctor stated I "don't have a mobility problem."

I can't do part of my job because it requires getting up and going to the printer quickly (to get papers for clients) and moving about the office, as I get so dizzy from POTS that I've nearly fallen over many times. In addition my knees/ankles don't stay where they're supposed so I stumble...and fall. The longer I'm at work the worse these episodes (not sure what else to call it) become. And I can't walk around large stores at all.

But I don't have a mobility problem.

[Triality]

Maria, that's interesting, because I've had exactly the opposite in my dealings with doctors all my life - dismissed by the male ones every time!

[Triality]

My previous post on this thread seems to have completely disappeared in the maintenance! So here it is again.

Maria, that's odd, because my experiences with doctors have been exactly opposite to yours: it's always the male doctors who have brushed me off, with only one exception that I remember at all (Dr K, my pain management specialist).

[Allie]

Yes, Yes and Yes again!! Apparently being hypermobile (of whatever diagnosis) makes us all stupid I've been told the usual "it's all in your head/depression" but the one that really annoyed me was from a Rheumy "of course you're in pain - it's going to cause you pain for the rest of your life, but you'll just have to live with it and stop complaining because there's nothing I can do" Arrgghh!!!

Luckily I've now got a fantastic GP who has backed me all the way and got me specialist physio really quickly despite a useless local Rheumatologist who doesn't seem to know his a**e from his elbow. It's got so bad that the local GP's and Psychiatric teams have put in an official complaint about him and refuse to refer locally as he's been diagnosing almost everyone with depression (even if the patient has been referred from the psychiatric team or like me are under their care but completely stable). Personally, I don't think I've seen a specialism as a whole so lazy with their diagnosis, as unless you can be diagnosed by blood test. All the one's I've seen over the last thirty years seem to believe that you're just there to make THEIR life difficult.

I would have thought that the most important qualification for an aspiring doctor would be a good bedside manner and an ability to communicate well, apparently not!

It did make me laugh though when I was reading an article about the demise of doctors' shorthand in notes now that patient are entitled to see them themselves. It turns out that Rheumatology was nicknamed Rheumaholiday by junior doctors - and I guess we can all think of reasons why!!

Hugs to all

Allie

[meggy.nut]

I had a really good doctor that was wonderful about finding alternative therapies..but due to an insurance data-entry error, I got transferred to a new doctor and can't get back to the first one.
I saw him today and he had me go through the whole bendy criteria after saying "I don't want you to hurt but is that as far as you can go?" (nope, but not without pain so had to show him full range anyways)
And before asking how I was coping or using the wheelchair he gave me a twenty minute lecture on how I needed to stay positive, get out of my wheelchair, exercise more, etc.
He completely disregarded the note from the cardiologist and only read/listened to the note from the rheumy who sounded an awful lot like Allie's (previous post). And that it was "premature to diagnose me with EDS 3 as I'm so young"
so said i had benign joint hypermobility syndrome...I really hate that word benign.
Apparently all my internal issues are not related at all and he fobbed me off to specialists. Which had sent me back to him to manage my care.

[serenity79]

I definitely felt this with the pain consultant I saw yesterday - we got stuck in a circle of

'you're not doing enough and letting others do too much for you, you need to do more to help improve your pain'

'I'm trying to do more but it's the pain that stops me, it makes things physically impossible'

'but you need to do more and you need to accept your pain and work past it'

'how can I do more? The pain floors me!'

'If you did more for yourself, the pain would improve'

and repeat ad nauseam.

[nemonie]

Try stabbing said pain consultant in the leg with a fork and then telling him he has to continue his day as usual and 'get past the pain'

Moron