Feeling let down by doctors

[ombili]

Ok, now I am going to rant again about that prolo doc. I'm sorry, I don't really expect anything and I think I've figured out how to handle her, but I just need a rant.

I will be going back for more prolo next week. I saw her again and by the end of it started just out and out lying to her because she doesn't listen. First she asked about how I did with the prolo and I said there was some bruising but other than that it wasn't bad. She asks me how many bruises? Two? Ten? I say, well, I could see around 5, maybe, but it's pretty hard to see back there. She says, "Well, if you can't see them then how do you know you had bruises?" To which I reply, no, I could see 5 or so, but I didn't count them!

She accused me of not doing my exercises and once again said I was too weak in the core. Her evidence: I said I had been sore and hurting after cleaning the house, and then she asked if my quads were sore and I said no. Apparently the fact that my quads weren't sore proves that my core is weak. I would love to challenge her to a test of strength. I am sure I would win. I spend 2-3 hours a day exercising! I am sure that my sore hands, feet, and shoulders are also proof of my weak core along with my back and hips...not! Anyway, I didn't argue with her. I just laughed at myself right along with her as she laughed in my face.

But then I just started lying and agreeing with whatever she wants me to think and say. She asks, did I take Tylenol? Tylenol does absolutely nothing for me at all. A couple of times, I took something stronger because the past two weeks have been agony, but I just said yes, I took Tylenol, twice. I figure, in the end, all I want from her is prolo so if she doesn't believe in HMS and thinks my problems are my own fault, thinks I am lazy, and keeps sending me for more physio, it really doesn't matter. Who cares what she thinks of me anyway? I worry a little about things going in my file but whatever.

The only bad side effect of this is I feel like I am not allowed to take my pain meds. I am back to feeling like a drama queen with a made up problem who just wants to take pills. So I have been rather in pain lately. I don't usually take them on a daily basis but probably do take them 2-3 times a week and more if I need to. I don't know. It's all sort of frustrating, but I guess I just have to suck it up. I have stoped telling my OH how I feel and I think he is happier for it too, and it's probably good for our relationship, so maybe that's all for the best.

[Spireite]

Oh Ombili,

I'm sorry about this stupid woman. I guess you are right to 'use' her just to give the prolotherapy a try and ignore the rest of her nonsense. Pity there isn't another prolo doctor in the area. Her result may be 'sub-optimal' cos she isn't willing to fully understand you and your body but you may still get something out of the prolotherapy trial.

[Eloise]

The only bad side effect of this is I feel like I am not allowed to take my pain meds.

Hi Ombili - you can take your pain killers Advice from a Pharmacist with HMS who understands your pain

I agree with you - while she is still willing to give you prolo - just smile and answer her with her "correct" answers! But it is so annoying that there is so many health professionals out there that just don't understand.

[Finarda]

What an irritating doctor! Sadly she sounds like so many that I've seen too. At least you've found a strategy that works. And taking pain killers when you need them seems like a reasonable thing to do!

Hang in there!

Fiona

[Ali13]

It's all sort of frustrating, but I guess I just have to suck it up. I have stoped telling my OH how I feel and I think he is happier for it too, and it's probably good for our relationship, so maybe that's all for the best.

You seem to be dealing with your useless doctor well pet...I'm just concerned with how that last bit sounded Of course it's good to talk about other things and no one wants to hear about how sore we are ALL the time-but you can't just push your feelings away all the time! Is it good for your relationship if OH doesn't know how you feel at all? I know if it was me I would eventually begin to feel hurt and resentful that I couldn't talk to my bf about these things at least sometimes.

But that's just me, I could be wrong. Was just concerned at how low you sounded at the end of your post.

[MandyG]

hi everyone

I just needed to offload a bit

I saw a rheumy for the first time about 2 weeks ago.

I thought it went ok and she seemed nice etc and diagnosed me with fibromyalgia and explained it is a very real thing etc and some people dont think it exists blah blah blah

anyway - I still think i have HMS despite only scoring 1/9 when she did the beighton score.

I managed to get a copy of her report today and it states nothing about diagnosing me with fibro. Just say she thinks I have chronic pain syndrome

it then goes on to say that I have health anxieties. The way it was written has made this seem like she is saying I am a hypochondriac (sp)

I feel really let down. I have never bothered about getting a diagnosis for myself cause i have never been believed and I just get on with it as that is all I can do. It has just gotten real bad in last few months that I decided to try for my own peace of mind to see what was wrong with me.

it's like I have shot back 20 years. I remember some awful doctors back then not beliveing me.

anyway - i still have my appt with prof G next thursday so am hoping he can clarify things.

The other thing in the rheumy's report said that 2 of my 3 daughters have hypermobility so I have convinced myself I have passed it on and therefore have it myself.


em...it is hereditory is it not?

this woman claims I am not hypermobile at all. But I can put both thumbs to my wrist and my physio last year said both my knees were hypermobile. she never took any of my childhood into account.

she also said there is nothing more to be done as I am pregnant.

gggggggrrrrrrr

sorry about this

xxxxxx

[Ali13]

Yep it's hereditary. And if you can put your thumbs to your wrist and were hypermobile as a child then that's most likely your problem!! Prof G will help- I think most doctors just don't know enough to make a diagnosis. My rheumatologist said I was hypermobile as a child but not anymore, but then wrote that my hips were hypermobile. But only formally diagnosed me with FM. But sent out the physio who ooohed and ahhed at my wibbliness! GP was suitably confused too.

Just hold out for someone who knows what they are talking about hon, all this stress can't be helping you at the minute!

[MandyG]

thanks ali - I just didn't think she would write all that about me.

I feel like giving up on it and just plodding on, but i also want some recognision if that makes sense.

my dla isn't going well either, been turned down twice so far and am asking for reconsideration again. I just feel like people dont believe me but I am in pain all the bleeding time so this is not normal.

ggggrrrrrr

fingers crossed next week goes ok and I wont have wasted £600 (for myself and one for my 6 yr old)

xxxx

[ombili]

Mandy, I am sorry to hear about your paperwork. I just wanted to wish you luck with your appointment with Prof G. I of course have never met him but I have great faith in him based on what others here have written. If all else fails I'd ask for a follow up with the doctor you saw and just gently go over what you see as the contradictions between what you thought you understood from your meeting and what she said. One possibility is that she could actually be trying in some way to help you by not putting FMS in your file - my doctor basically said that he was doing that because of the perceptions people have about it. In any case it sounds like there has been a misunderstanding and one that you'll need cleared up!

Good luck.

And everyone, thanks for the support! I will keep you informed about how I keep going with this doc. I see her Thursday for round 2 of prolo. I did take some meds last night and may have to do so again today.

[ScottD]

I've just spent a while reading the replies in this thread and am not surprised at some the things that have happened. Some doctors just don't seem to know what they are talking about or don't care. My wife is a medical scientist and she has to prove he is keeping update with current research. Do doctors not have to do this?

When i first went to the doctor about pain in my left elbow he said i had tennis elbow. "What about the general aches and pains in my other joints" i asked. "Oh i wouldn't worry about that, you've probably been over doing it" Over doing what exactly? These arrogant people really get to me. He injected me with a steroid and said that would clear it up.

A few weeks later after nothing had happened I went to see a different doctor who said I could be hypermobile and she made an appointment with another doctor who specialised in joints and he confirmed it.

Scott

[WinonaLemonade]

i can completey sympathise with the posts as well but have never done one about my experiences because it just seems that everyone i see other than my GP is insensitive and patronising and doesn't know about hms. i agree that there is a problem in doctors not having to update their knowledge.

[paw]

i agree that there is a problem in doctors not having to update their knowledge.

I can't say that about my GP or any other board certified doctor in the USA. My GP is a board certified Family Practitioner. She has to take her board exams every 7 years in order to keep that title. She will always be a licensed Medical Doctor, the board certification means she is a specialist with extra training in her field. It makes me feel good to know that she does have to keep training and doing those exams. She is a good doctor and she listens which is a huge part of the battle.

For everyone with less professional doctors, (I have had a few myself) it might be time to try a new doctor. I hope you find a good one. Some of the useless doctors I have seen have had their board certification (I guess that would make them Consultants if they were in the UK) so that is not a guarantee that they will help you.

[wendywitch_2001]

We had a good, caring and understanding Doctor out of a panel of 4, unfortunatly he was fired:( now I'm left with one who's 'ok' a ignorant, rude p**t, another who just doesnt listen and the replacemnet dr who thought it was a good idea to take me off antiinflamatories... hmmmm so I take a hhigh dose dr, why do you think that is? idiot anyway 2 weeks later in agony i had to have 5 weeks off work.
last few weeks i've been in a lot of pain, there's no point going to see GP, his answer is a sick note oh and the classic last time comment of 'u should address you weigt issue' ahhhhh I'm sure there are people out there who are very slim and in just as much pain. Can't quite see how shoulder pain is related to being fat, knees, well possibly but d**n i have HMS dr read my notes:P
Don't even bother with A&E now, last time I went i was offered paracetamol or ibruprofen in the waiting room! lol, just give me some jelly beas they would do about as much .
To be told a person cannot possibly sublux, pop out etc a joint ......aghhhhhhh A physio told me that once too, great supposadly trained in HMS physio at Leeds.
Does anyone else feel really lost with HMS , EDS etc. noone helps,
I do have to say the orthotist i see at Leeds is great though:)

[Ali13]

Sorry you're having such a tough time Wendy I sympathise as I'm having similar problems at the minute with my doctors. The only advice I can offer is to keep pushing, change doctors and bring piles of info on HMS/EDS (look for articles written by Prof Grahame or Bird as they know what they are talking about). The weight issue may help, although doctors seem to lose all sensitivity when pointing that out. If your joints are struggling excess weight will only make it worse- however- if you are in pain and distressed how are you supposed to lose weight?

Hope some of that was helpful

Ali x

[ladypythia]

I can relate and pose a question:

What do you do when you feel like a doctor brushes you off?

Here's my scenario: My Rhumetologist (a woman) wants me to see a PT for my hypermobility. I can't afford it and my insurance deductable. I'm having a lot of pain. I told her this at the appointment too.

So, I called the office. I left a message about the PT. I asked what I can do instead and if she felt Fibro treatments/protocols might help my pain.

And the nurse calls me back and says to try water classes at the Y (which there are none in the area) or at a gym. If I had money for the gym - I would be using it for the PT. I told her that advil and anti-flammatories aren't helping, she said I could take tylonal. That's it.

All I could say was thanks and hang up. I feel like a moron. I have a valid problem and diagnosis, but then I just get brushed off. The gastroenterologist (also a woman) did the same thing. I thought that once I diagnosed with real problems I would be taken seriously and supported, but I don't feel that at all. My GP is excellent and I see her on Wednesday.