Feeling let down by doctors

[WinonaLemonade]

i had a gp appointment today with a locum doctor that i have seen before. i think he is german, he is really hard to understand and never really gets what you are saying. he had absolutly no idea about hms, the last time i saw him a week ago he sent me for 8 blood tests and an ecg for palpitations and faintness even though i said that it was from my hms he still thinks they are unrelated. he has decided that they are a very rare side effect from my meds

when i asked to change my pain killers he didn't know that hms causes pain and he also didn't understand what i said and thought i wanted to go on the pill i had already said a few times that the gp i saw before said she would refer me to the pain clinic but he didn't understand why and then started saying stuff in a really heavy accent that i couldn't understand but i caught 'deals with' and 'fibromyalgia' and i think he was saying what sort of things the pain clinic does.

then he said that i should make another appointment with him and the nurse to have some more blood tests so i said that i had had rheumatoid and anti-nuclear last year to diagnose my hms and then had to explain that hms causes pain (he though he needed to look at my joints) and i wanted to change my pain killers, he then tried to tell me that there were no more pain killers available which is rubbish because it's not like i have tried everyone that exists and then said that i should not take them for a week to see if they were causing me side effects. i said that i have had problems longer than i have taken them but i don't think he understood then i asked again if i could be sent to the pain clinic and he actually refered me which i was so suprised about i had to try really hard not to start laughing but i said thanks. i think he did it to end the appointment because he was frowning and said that he had refered me and there was nothing else so goodbye. it really made me realise how good my normal gp is and i really hope he gets better soon!

[SAMMY]

Hey twinkles. Welcome!! Life isn't going to be easy but you are in the perfect company!! When I first looked I thought no one would take me seriously!!! How different things are!!! I look forward to knowing you and I hope you find this a great home. We love you!! SAMMY

[cuttingcaroline]

Hi all,
I'm hoping you can give me some advice. It seems that everytime i visit my GP and when i last saw a rheumatologist they weren't in the slightest bit interested in my HMS, they only wanted to talk about my Fibromyalgia, and this involved giving me a sick note and refering me to physio. While the physio is useful, i'm not getting any answers about the various changes happening with my HMS and other than researching it myself, i'm not getting any proffessional support. Does anyone know the best route i can take to get some one to listen to me? I'd really appreciate some help, i'm getting so frustrated.
Cheers Caroline x

modnote: topics merged - look up the assertive method in this thread, it may help

[cll]

I understand where you are coming from, however don't hold all hopes on a local rheumatologist. I got a referral to a local rheumatologist and he told me to away and live with it and he offered me no referrals. He told me all my symptoms including bendy joints were in my mind and stress related. I had my hopes held with him and ended up so disappointed. I have more support from my orthopaedic consultant. I am now considering asking for a referral to one of the specialists.
I guess you and me are among many who feel lost

Claire

[Spireite]

My major complaint of the last ten years. It's shocking for professionals.

[leashy11]

To be honest most of the doctors I've seen have never heard of HMS and we have a particularly bad GP at our practice who thinks every complaint I ever have is because my MUm died 7 years ago and my sister 2 years ago and just puts it all down to that! It's nothing to do with that and I now refuse to see him even if it's just for something simple like a throat infection etc. My current GP is really good for referring me places though and I could have cried on him when he said "I'll send you wherever you need to go to get to the bottom of this, I think you've been through enough pain". What a guy!

[paige]

the woman gp I see exudes a coldness, she forever makes me wonder why she ever decide to become a doctor when her manner is appalling. I hate having to see her, I find her dismissive and arrogant and whenever I have had a hypermobility problem she just completely ignores what I say and makes her own mind up to what is the problem. She has made me lose all my confidence in gps, and that is why I have not changed surgeries. The last time I saw her I took my hubby along with me for support, as I wanted a referral to a rheumotologist. She has never referred me to one after all the years I have had hypermobility problems, even tho physios and orthopaedic surgeons have told me that I am hypermobile. All she could say was that she would refer me to a rheumotologist as though it had been her idea and I had some sort of syndrome but there is no treatment for it.

[FunkyPhysicist]

I know exactly how you feel! I have been through pretty much every doctor at our surgery and have found that at some point they have each not known what they are talking about! I was originally diagnosed with fibro however after doing a bit of digging myself and seeing another doctor for a second opinion as my joints are obviously subluxing (bits of bone stick out etc!) I got them to agree with me! The only one that I still trusted to give decent advice has been a major let down with the whole HMS debacle! When she agreed the diagnosis, I was told painkillers probably won't work (the ones they have tried don't) so not to bother taking any and that she would refer me to physio although "it wont help you at all with the problem now but will help prevent arthritis in the future". So after no helpful advice I was pointed to the door!

I went back a week later as my joints were deteriorating rapidly & asked to be referred to the clinic in London as I have been through the local hospital hundreds of times with various joint probs and was never picked up. Safe to say I had to find out from UCH that the reason they hadn't got my referral was because the GP referred me to the local hospital YET AGAIN, regardless of the surgery telling me that they "were sure she would have sent one to UCH"!?!?

I then asked to be given evidence to apply for DSA as I am in my penultimate year of uni and was told "you may not have this problem next year". So apparently this condition will disappear in the next 3 months?

Then, I broached the subject of being worried as at 23 I was getting very unstable on my legs as they sublux so frequently and struggle to walk the short distance to uni. I asked whether resorting to a walking stick would be a good/bad thing and was told "if it stops you being scared to leave the house"???? Making me sound totally paranoid and like it was all in my head! Not that I was worried as I keep collapsing/leaning on walls etc as my legs are so weak and unstable!

The last week has been horrendous with my joints partially dislocating multiple times a day, particularly my hips and I am in utter agony. Saturday was spent crying and struggling to get off the bed to even go to the bathroom (not to mention the agony that was trying to sit down full stop!) yet I am so annoyed and dismayed by my GP's responses that I am getting to the point where I can't face seeing them again!

So the question is, when things are deteriorating to such an extent and the GP's are not just patronising and unhelpful but basically obstructive , who can you turn to?

PS. Sorry if that was a bit of a rant, am also a tad exam stressed! :p

[jeanz]

Hi, I have been see lady gp weekly for 5 wks getting nowhere fast plenty of sympathetic smiles , dont lift,bend....etc list (impossible to avoid i am carer to my mum) she has given me varying strengths of diazepam over two seperate 5 day instances ok whilst using it but then i stop it and pain back again, then she gave me solamorph to take when "desperate" . Decided to try male gp today he seemed in bad mood to begin with turning up late,computer playing up etc. I admitted since being in so much pain been adding extra paracetemol he said you do realise you will eventually poison yourself (i managed to resist temptation to say at least i would be out of pain, well if you sorted pain meds i wouldnt need to add extras on,...ooooo the list bubbled on in my head) he then mentioned pain clinic (been twice before being eventually diagnosed with hms on of dr was excellent listened disscussed gave you choices the other one i saw second time was arrogant you will take these ,you will learn to live with oain would not discuss meds he wanted to put me on that i didnt want to try because of list of side effects and told me flatly if i didnt take meds he said i may as well not come anymore so i discharged myself in tears that same day) Heaven knows what pain clinic wrote back to my gp but gp today said he would try changing my meds first. he has doubled mt tramadol daily amount taken my solphadol away and given me paracetemol instead and given me a small dose of imipramine , i was on naproxen also which in my fuddled upset state cant remember whether i am still supposed to be taking as well or not ?? so what to do? not just abour naproxen about gp attitudes of pain meds i feel a nuisance to them, just a hassle if you know what i mean (will try new mix and hope they work ) . I start physio monday 12th dunno if the physio will even know what hms is i have had bad experiences with physios too. One in particular told me my stomach muscles were useless or words to that affect in other words i am a fat moaning hypochondriac !!! thats sure how they are making me feel. Do i just accept pain killers is there no other treatment for hms??

[Blaadyblah]

Really sorry Jeanz - there isn't any treatment besides pain meds and physio. You might want to try a tens machine though, I find that helpful (they have their own topic). You might want to have a look at whether there is an expert patient program running near you - they cover a little pain management but more useful I found was the segment on getting the most out of medical appointments and professionals. Very handy.

[gila]

jeanz!
well... there's a whole heap of 'treatments' that can help with the various hms probs... but there's nothing that can 'cure' it, make all probs just disappear... we wish...
and if your pain has gone chronic and is poss due to pain signaling system going haywire, then I'm afraid the rude pain doc is right "you'll have to learn to live with it"... there's no pain meds/no anything that will make it go away completely... but there are indeed loads of things, many that you yourself can do, that can lessen pain, make managing the pain/and hms in general easier/better and can get you back to leading a more normalish life.

have a good nosey around this site, the pain management section/alternative therapies/physiotherapy/orthotics/acupuncture/relaxation techniques/core stability etc; search for "pacing" (or google "pacing for ME"- that should find you a good pdf leaflet- pacing is also used for chronic pain and taught on 'chronic pain management courses'- which is one thing you might find helpful)

re physio- again read through info on here for things to look out for- there's also a good downloadable leaflet re physiotherapy on this site in the "shop" (access from main site), which it might be an idea to take to the physio with you-
if you wonna go the 'whole hog', buy or get your library to buy (it is expensive) the book " hypermobility syndrome-recognition and management for physiotherapists" by Rodney Grahame (yep prof g) and rosemary kerr and take that to the physio
as yep if physios arent familiar with hms... that can cause probs...and yep pity enough it is often down to us to 'educate' med bods, provide them with info.... and yep physio and exercise is a v important treatment for us bendies ...

re "One in particular told me my stomach muscles were useless or words to that affect in other words i am a fat moaning hypochondriac !!!" ... he/she might indeed just have meant what they said... cause yep many of us, also v skinny ones, do have 'useless' muscles (can be anywhere) ... and core stability (good core muscles), which he might have referred to calling it 'stomach muscles' are indeed v important and can make a difference overall.

also maybe ask the physio to give you some advice on good lifting techniques (and again core muscles are important in good lifting)- maybe they could even watch you how you lift, and be able to give you some helpful pointers

and.. it sounds like your gp is on the right track meds wise- one suggestion... he could maybe think about switching the imipramine to amitriptylene (whole thread on this on here) in a lower dose than is used for depression- for some peops this really helps with pain and sleep probs, but it can make you put on weight, though that seems to happen more likely when in depr dosage- check the thread

good luck!
xxg

[mrsc2b]

Hi all
I feel so much better now I've found this thread! I went to the gp this week and spoke to him about how I'm not getting relief from the pain despite all the meds. I was also concerned that my naproxen was causing my raised blood pressure. His answer was that if they weren't working then I should consider cutting back the pain killers ??????? How would this help? I have a demanding job hankfully with good holidays but I'm getting no relief. It takes a week to recover before I feel anywhere near able to go back to work and then before the week is out I'm back to square one. Like Tammy earlier, I have a huge problem with fatigue which has not shown up in my blood tests....... knew it wouldn't!
I'm being told to loose weight, Yes I know this is improtant but I have PCOS so I'm really not good at that (it's almost impossible if I can't exercise which I can't because I'm in too much pain........)
HELP!!!!!!
Any suggestions? I'm starting to think that I'll need to give up work soon and I really dont want to as I love my job
x

[loosebones]

I totally second what blaady and gila have to say. It's a tough thing to accept that physio and meds is the only way forwards but over time I have found that a daily routine of physio has actually helped me in the long term with stability - with hms it's more of a long term fix than a short term fix and a lot of hard work. It sounds to me like your gp has listened because he talked about pain clinic, pain meds and physio - these are the best tools to move forwards with.

[Rosie]

Hiya

Sorrry to hear you are having such a rough time. I just want to say that, hard though it is to accept, you will probably never be able to make the pain go away completely. Pain meds and tyreatments can bring the pain to a level you can cope with while stilll being able to function. For me, yes, I could have more pain relief that would make the pain disappear, but I would also be sedated so heavily from them that I would not be able to walk, talk or generally function, so it is a matter of balancing meds and treatments so that you can manage your condition.



Rosie

[Tazzy]

I just had a doctors appointment and tried to get some gabapentin like she said shed give me if naproxen didnt work, which it didnt. Also wanted to make a physiotherepist appointment with the hospital down the road and she insisted that I have the physio at the clinic (epic fail of a place). Took me some fighting getting the physio though! i told i was going to the gym building the muscles round my joints for now until i can get a physio and then she wondered why i needed a physio! omg! i was soooo annoyed. Only good new is that Ive managed to get blood tests for a CRP, FBC, PCV, BCP and an ECG. Which is all well and good and I think important but still...why would she not give me gabapentin????? she said she would last time and it works for sooo many people and fibromyalgia and loads of other things! And why fight me for the physio this time when last time she was insistant I have one before the rhuematologist appointment??????!!!!!! omg, so annoyed. It was like she put me in a spot light as to where i got the idea of gabapentin, i told her the rhuematologist said its good and my mum and all you guys but no...she wants to check up on that aye..

Has anyone had these problems? If so, how do I deal with it? I know I need to change to a different place and ive found one that sounds wonderful and understanding. But I really dont want a repeat of this or anything similar...avoidance is the key. Any tips???

Thanks
modnote: merged with existing thread. Please try and post in a relevant thread instead of starting a new one