Feeling let down by doctors

[Lola]

First of all, thanks a lot to "Stone", "Spireite" and "Itigo" for your replies!
It's actually kind of a relief to realise that I'm not the only one suffering in this part of my spine. (although I feel sorry for you all to have to suffer it!)

I don't know about you, but I find that most information on back pain on the internet tends to be more about lower back pain, as I guess that is the most common.
It's been really frustrating (and still is) not knowing exactly what the hell is going on.
Like I said, my doctor doesn't seem to know much more about it than I do so I just keep getting sent away with no treatment.

I think getting referred to a local pain management clinic sounds like a great idea, so I might got for that first. I think "Stone" is right that a combination of medication and physio is probably the best way forward.

And for "Spireite" I had not thought of botox! But if it works I think I should definitely consider it....... especially as it worked so well for you.

"Itigo", I hope that you will actually get some answers and some help! Although I know how you're feeling. It's so frustrating when you suffer everyday and nothing seems to be getting done about it And yeah, it's probably a good idea to keep in touch in case one of us finds a solution

I can't see that happening soon, but we can keep praying!

Lola

[cat117]

Triality - I know exactly how you feel. I went to my GP about some mental health issues a while back and now every time I go to the doctors I know that they can see that I have depression and it makes them treat me differently. They won't give me enough pain meds to last any length of time and I can't have them on repeat prescription so I keep having to go back and beg for more when I run out every couple of weeks.
I get that they have to be careful and not give people enough meds to overdose on but to be honest if I wanted to do that I would just walk round all the chemists for a couple of days until I had enough. Oh and they're convinced that half of the (very real) pain I suffer is for attention or all in my head because of course having depression makes you a complete loony.

As for my physio, well! She saw me today for the first time and went through a load of tests and what have you. She then sat me down and said that I wasn't helping myself enough because I don't do enough exercise so I should go swimming or something (despite the fact that I walk the 2 miles to Uni and back at least once every day). And then she told me that it wasn't good for someone of my age to be using a walking stick and it can't help all that much anyway (even though it does) so I should try to stop using it. Basically I'm a lazy hyperchondriac (sp?) and there's nothing really wrong with me.

[madmum]

I did at fracture clinic today,i got criticised for the xrays i have had and told the junior doctor knows nothing and the line is a healed fracture! He wanted to send me to pain clinic and told me to go away and use it as he would not operate(i do not want surgery). I got angry. Tomorrow i go for another opinion.

[debbiedo61]

I have found that if you arm yourself with the littriture supplied by this web site,you can at least have some proffesonal back up.
When i whent to my hydrotheraoy this week,i found that they didnt have a clue what to do,I was given exesise that was cousing my joint to over flex,when i showed her what was happening she re-revised the program.
Now i feel much better going to see her,as i know we will be able to work together [fantastic]
Well what can i say as regards to gps dr ext.they just think we all have anxiaty that causes all our symtoms,its an easy way out for them,as they dont have to do any reserch and add to there oh soooo stressfull day dealing with nurotic nutters like us.
we know its not in our heads now becouse we have done our revision and have more insight than them,ahh bless,it not their falt thay have no intrest in new reserch that proves this is not phyco=symatic.
We will just have to keep trying to educate our profs and keep stong mindedd although it takes it out of us,we need to keep positive although it gets us down and causes us extra probs ,it makes me feel like the suffragets must have felt,so we must not let it get us down.
Just keep going peeps,keep our chins us and be stong.

[meggy.nut]

My recent visit to the rheumatologist was aggravating and disappointing. My hope for the appointment was to get find out why I'm having some type of tachycardia and what to do about it, and in general manage my HMS better as I'm almost completely dependent on others at the moment.
At the beginning of the appointment, she said she needed to practice medicine, i.e. not prescribe medicine willy-nilly.
I told her I was diagnosed with BJHMS by one of her colleagues, but she went through it all again. I hyper-extended more than I had in the previous diagnosis and while my ankles weren't hypermobile when you bring your toes to your shin; I showed her I could clap my feet. Her response: Well, I can do that so it can't be hypermobile.
The final diagnosis - I have BJHMS because I don't have Marfans.
I told her that my pulse rate is normally around 65-70 bpm, but lately its spiking at 113, and hovering at 85. The rheumy told me I should probably get that checked out. And adjust my medication dosages. But she wasn't going to do that as she wouldn't be following up with my case. And she wouldn't put any referrals in the system, as that wouldn't 'be practicing good medicine". Riight. Tell me I need tests and/or treatment on my heart (a very important organ in my opinion) and then not order them or send me to a cardiologist. Of course, THAT is practicing good medicine.
I also told her that I'd been having more troubles every day with my HMS, and it was debilitating. (Hint: Debilitating = Causing a loss of strength or energy). She said "don't worry, it's not debilitating - lots of people are fine and you won't turn into a vegetable or anything." She next patted me on the shoulder and said..."It'll be okay."
At the end of the appointment she told me to follow up with some other doctor for pretty much everything we discussed; but I could call her if I needed anything.

Oops! That went a bit longer and a bit more of a rant than I intended. Thanks for reading and the support on these boards.

[Eloise]

I felt patronized by a doctors receptionists - so I think I count putting it in this thread. So because of the snow this last week I had to phone up on thursday to cancel my appointment on friday as it hasn't been safe for me to leave the house. I asked if I could have a telephone consultation instead - she told me to ring at 8:30 the next morning. I did that and they said my GP would phone me back. I stayed by the phone all day, and when my mate did phone for 3 minutes to check I was OK I told her to get off the phone as I was waiting for the GP. So I get to 4pm and no call from the GP so I ring them back. They say the GP has it recorded that she tried phoning me - I told them there was only 3 mins in the whole day I was on the phone! They said the doctor had now left for the day so I would have to phone back next week (as this was friday). They offered for me to talk to the other doctor on call - but he doesn't understand so I had to refused. I then asked if my doctor had any appointments next week - they said there was one monday morning. They then had the cheek to tell me to ring up and cancel if I still couldn't get there because of the snow.

She just sounded so patronizing asthough she couldn't understand why a 33 year would be trapped in the house because of snow! Hopefully tomorrow my friend will be giving me a lift down to my appointment so I should get there. I hate feeling trapped in the house - and to wait by the phone for the GP not to ring and then have a patronizing reception was the last straw and I ended up in tears

[debbiedo61]

I think we all have to go to assertiveness class just to be able to deal with this ignorance,I also suffer with a fast heart rate and have been told its just anxiaty dont worry your fine [as if a heart rate of a 140bpm is fine,and thats at rest].I also get central chest pain that goes right thrugh to my back and heart burn that so bad it wakes me up at night,the gp says he isnt that "exited"abought it,how patronising i think to myself.if we make a fuss thay will say we are nurottic or something and need to see a psych cos its all in our head.
We must be all mad and causing our own symptoms[funny we all have the same symptoms] I think i will have to change my g.p and hopfully will get treated better
I have got to the point where i dont go to see him any more as its a wast of time and it gets me upset.
why do these gps not know of this condition?its so frustrating for us the ones who are sufering to try and educate them,then get ignored or patronised,you can almast see it sliding off the top of their heads,lol

[nemonie]

I would recommend to anyone who is feeling patronised by their GP or other medical bods to search for the "assertive technique" and have a go with it at your next appointment. If you still don't have any luck changing their attitude, change doctors if at all possible.
Eloise - unfortunately medical secretaries are generally evil old baggages who seem to have no concept that someone going to see their doctor may not be feeling too well or be well in the long term
Meggy.nut - have a search for POTS and autonomic symptoms for the tachycardia issues. Sorry the doc you saw was c**p

[lil_miffy]

Becuase of my past mental health issues I get alot of patronising from drs. What doesnt help me is that I cry easily when Im talking about my eds when its something that is really bothering me or causing alot of pain especially if the dr isnt listening or taking it seriously. As soon as I start crying their response is

'I think you are depressed'.

I get told to go away and not be depressed basically. Even now when prof bird and the gynocholigst he sent me to proved that my depression was a hormone intoleance that has been resolved by my inplanon (which is working again now after a little hiccup). So I do not get depressed anymore. I practice ALOT of CBT in managing my eds, the pain and fatigue. Im a very positive person and very rarely get down or fed up, angry or negative. When I go to the drs its becuase Iv tried everything I can myself. So when they dont take things seriuosly and patronise me its exxtremely frustrating.

What annoys me most is how thick it makes me feel. They make me feel like the most unintelligent person. They don't seem to realise that I have brain cells. They don't seem to realise that I understand alot of how the human body works, especially my human body. I know what is going on when things arent working properly inside of me so to be told its anxiety or depression grrrr.

Iv tried many approaches in the past, the assertive, the agressive, the calm, the tolerant, the patient, etc. None seem to work. I'm now at the ponit of sitting back and giving up again and I know this is the worst thing to do. But when nothing else works what can you do?
My gp won't read any of the information I take in for him. My physio has discharged me, and these I thought were 2 very keen to learn and understanding professionals. You can take them information, you can try to expalin to them how things work, you can try to educate them, but when they don't listen or take it in and they still close the door on you there isn't much you can do.

[Dannie]

I cant remember how many times ive felt like this!!

There have been countless times that my right shoulder has dislocated and Ive ended up in hospital because my partner couldnt relocate it (he was taught by my old lovely consultant!). After it had dislocated about 20 times in a month my consultant wrote a specific care plan for me if i needed hospital treatment as I was basically being knock out everytime and I didnt want it.

Well anyway, ive had quite a few doctors dismiss it, and do it " There way first!""... This normally ended up with me laid flat on my stomach, with my arm dangled over the side of a hospital bed with weights attached to my wrist!!.. I'd end up in worse pain that i went in with. Finally they would go back to the care plan.. relocate it using Entinox as pain relief and muscle relaxant.. instead of all the hard drugs that they had given me.. and physically pull on my shoulder until it went it and then they had to stand and physically hold my shoulder in place for 10 minutes to allow for muscle spasm's to settle, and miraculously it would work....

But ive also had the "" Its in your head""... "" She can dislocate it by herself!""... "She can relocate it by herself""... ""She's fighting us"".. And I must admit that I get pretty angry when they say this whilst pulling my shoulder so hard it feels like its going to rip of m body, and manage to in all my entinox hazyness ask them when they passed out of the school for idiots, and if they were to read my notes, it actually says that ive had psycho evaluatuions and I am not pulling it out!! ( seriously who would do that anyway!! god knows it blooming hurts!!)

Well sorry about that little rant there lol xx

[meggy.nut]

nemonie: Thanks, I looked at the POTS info and some of it is very similar to what I'm going through.

I had an . . . interesting experience with my orthopedist yesterday. I asked him again for either a scooter or a motor to attach to my new manual wheel chair as I'm having problems with my shoulder. Which he operated on. His response? "How old are you again?" and laughed. For the record I'm 28, which apparently means that I couldn't possibly need assistance getting myself around. I told him - again - that my shoulder is hurting much more than it used to and starting to get tingles in my hand. He told me I need to build muscle. ( I know that, but I don't want to damage the repairs)
Now my bad shoulder is extremely painful and I can't sleep in a bed, I'm back to the recliner. Hopefully it will calm down soon.

Best wishes to everyone!

[Lemonbunny]

Hi all,

I recently qualified as a doctor and even I have come against opposition from one female rheum consultant.

I was diagnosed back in 2007 by a rheumatologist who batted the words hypermobility around when I went to him with severe hip and back pain, but it only came out when I read my GP referral to a physio nearly 6 months after for thoracic back pain. Needless to say my attempts to contact him after him saying "just drop me a line when if you need to see me again" were useless and instead I got re-referred to another local hospital. The registrar I saw was fantastic (my bf said so too as he had been working with her) and she thoroughly examined me, taking nearly an hour with her initial consultation. However, when she got the consultant in for a quick chat she was totally dismissive of my autonomic symptoms, stating that I didn't look like I would have these. I even had a journal with me stating about the occurrence of these symptoms in BJHMS and she didn't even acknowledge it. Instead, telling me I needed a better bra and to do pilates, and there was nothing more she could do for me and basically not to rebook anther appointment. The reg did book another appointment and since then I have an uss and MRI on my foot showing tenosynovitis in 3 tendons which I somehow need to arrange for USS guided hydrocortisone injections. Unfortunately the reg has since moved hospital and I don't want to go back for my appointment in January: a) because I know the new reg as I worked with him during my on-call days and b) because the consultant didn't want to see me again and I wouldn't go back to her. It now looks like I will need to get another referral back to the original hospital with a different consultant (a fellow colleague has EDS and she recommended one). Its such a pain that all rheums aren't equal.

I think its partly down to the doctors personality and some just don't want the "patient" whoever that may me (including other docs) to get one over them. Also, as some of you have mentioned, the younger ones are a more accepting. I always go to a younger GP or GP registrar if I can.

Anyway, I promise that if I encounter any HMS/EDS patients I'll take you all seriously

KT x

[left of centre]

I've been patronised & fobbed off by my doctor for years. I've been made to feel like I was wasting his time, like I was making it out to be worse than it is, even like it's not really 'that' bad, when in fact, it has been bad enough to warrant a few surgeries
I had the chance to go private for a short while, & was treated a lot better but still no one would diagnose HMS (I didn't even know what it was then but surely that's the job of the health professionals & not that of the lay person?)

I feel like I'm banging my head against a brick wall half the time

[Ems_85]

Hi guys,

(I hope this is in the right place)

I'm new to the forum and am in need of help! I was advised to get a referral to a rheumatologist in my 1st post on here. I already had an appointment with my doctor as I have been in increasing pain and have recently has spasms in my neck which are affecting my breathing and speech.

When I went for this appointment last week the doctor actually asked me what HMS was as she had never heard of it! She then said physio would be best for me....AGAIN! I've just come out of my physio appointment in tears!

I explained to the physio what I had been referred for and told him all of the stretches and exercises I do to help myself, which were given to me by 3 previous physio's. He then told me that HMS is not a medical condition and simply means that I am 'bendy'. These flare ups and worsening and more widespread problems are normal and will simply go away as I get older. He did not examine me at all and when I asked about the worsening pains in my hands and feet he just said I'd get used to it and then they would go! (I've actually had to bathe my hands in warm water just to finish typing this) I told him that I didn't consider it normal to have to be helped up if I sit on the floor (or even on a chair for too long), to be helped up the stairs and in and out of the shower and to have to ask people to lift pans etc for me when I cook. He said that it's simply about knowing what hurts and not doing those things. Am I supposed to stand all of my life and not eat or shower!!

I mentioned a rheumatologist and was told that I didn't need to see a doctor or physio so I certainly didn't need any more referrals!
I was in there 6 minutes in total and went from feeling hopeful to feeling stupid for wasting his time, upset and angry.

I'm getting really fed up of fighting as it's been 5 years now (one since my diagnosis) and no one I see seems to believe that there is anything wrong. I feel like I was only diagnosed because the physio who did so thought I just wanted a name for my problems then I'd be happy and stop pestering. I get spoken to like I'm wasting doctors time and could really do with some advice on how to get to see a rheumatologist or at least get a doctor to listen to me.

Please help!!

[AnnaH]

I really feel for you Em, and I have to say that information you have had about Hypermobility Syndrome is simply wrong - hypermobility is not a disease, it's just bendiness, but Hypermobility Syndrome is different. If your GP won't refer you, is there any way you could see someone privately?

I saw someone in Hemel Hempstead who was brilliant - he diagnosed me and gave me loads of advice, including a warning to beware of physiotherapists who didn't understand HMS. He also confirmed the medications I was on for pain, and wrote to my GP advising him that I needed higher doses to get my pain under control. Then he said "It's over to you", as we are the experts in our own condition, but sometimes its nice to have an expert opinion and be able to feel confident in that.

My only regret was in not having seen the private rheumatologist (who also works on the NHS) sooner. It was money well-spent.

I must admit, every time I hear one of these stories about people getting the brush off from GPs, I feel really angry, but not all doctors have that attitude. My current GP doesn't seem to know anything about HMS, but at least she doesn't pontificate on stuff she knows nothing about. My secondary diagnosis of fibromyalgia has proved useful, however, because at least they've heard of that, even if technically speaking, my symptoms could all be put down to HMS.