Went to the first appt which is an info session where we were treated like complete imbeciles who knew nothing about pain, patronised and told we have to do random urine drug tests, the results of which are not on a secure database and any staff member in the hospital can access them and make assumptions you are a junkie the next time you see them. I doubt I will go back.
To make it worse, it is right next to the methadone clinic and I came out and some bloke was selling his methadone to blokes in a car. Lovely. Not happy and why isn't this all told to you before you are referred so you can make an informed choice not to bother waiting 14 months for an appt only to be treated like that.
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Someonesmother
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Its a pity that these drs don't suffer the pain we go through then they would have a better idea on how to treat us instead of treating us like junkies.
Hubby had some drugs given to him at the hospital last Thursday only to read the paper that comes with it to find he can't take them because of his bp and when he saw the dr yesterday at our drs to be told he is allergic to them anyway. So we are back to square one with him. Myself well i am still plodding along in constant pain as per normal. How are you keeping apart from being in pain an all.xxxx
Oh no that is awful that he may have poisoned himself if he had taken them. Very scary, but I guess like me with multiple drug allergies I read the fine print and keep asking if they will interact or cause me issues. I hope they can find something he can take. Well I hope you can find something to help you too. I am going along OK, I go in in March for my neck op so just waiting for a date. I am really hoping it resolves the painful dead arms and maybe the neck pain. He warned me the neck pain may not improve but if I could use my arms again without all the pain and numbness it would be great.
Aww bless you my darling,its no fun being us is it. I am waiting for a pain infusion(cancelled in January due to illnes in the area) also waiting for surgery on my toes to straighten them . Hugs darling.xxxx
well I hope you get that soon and that it helps you. Oh well I hope your toe surgery happens too that should make a difference when you have recovered. Good luck I hope things pick up for you.
He had the same thing happen a couple of Christmases ago and he was ill all over the festive period and it was only after the new year when he was at the drs and she took one look at them and threw them straight in the bin, She was so angry at the dr who gave them to him. So ever since he reads them deeply to make sure.xxxx
That sounds awful. I sympathise completely if you decided not to use their services. Fancy having to wait fourteen months for that. You must be very disappointed!
Hi Helenlw7. I sure am. It was bad enough that the info was aimed at people with no idea of what pain types are and what happens when you have chronic pain, so boring I just facebooked and texted through that bit, but then to be told we will have random urine drug tests - no way. I was not letting that one go through. he said some lame excuse about people abusing drugs and alcohol and they need to know in case they prescribe anything. Fair enough but then went on to say they don't prescribe. So what is the reason for treating people like junkies?
Is there any way that you can leave some feedback on the clinic? They need to know why you don't want to go again! There won't be any improvements without complaints.
I wrote to my rhuematologist this afternoon to explain that I found it appalling that we will be treated like junkies and that they really need to let patients know what they have to commit to to get this help and so that they can make an informed decision if they want to be referred there or not if they don't agree. Sadly I think the only way would be to ring them and tell them what I thought of their info session etc. They are like this secretive part of the hospital with no info anywhere and no contacts apart from a phone number.
Thanks. No it was horrid. Others just sat there and accepted everything and I kept thinking, are they not worried about their privacy and who has access to all this info? Scary that people are so compliant.
I am fine on what I take and don't abuse them. I have done so much reading and research over the past 6 years managing this by myself . They keep trying to get me to take lyrica and other horrid stuff like that. Never again, it was just awful and not worth the side effects.
It made me lose my mind, I couldn't string two words together, like having dementia and my legs swelled up so bad I thought they would bust. I tried some anti convulsants and they were horrendous too. I cannot function feeling like that and endep gave me something like narcolepsy. I couldn't wake up and it just kept getting worse, so I stopped them and it did nothing for me. I have paradoxical reactions to drugs so I am loathe to change what is working for me.
Now i am on lyrica with no side effects,but i can't take morphine it sends me doo lally tap so i can't take much except paracetamol,codiene and slow release tramadol,so i am restricted by pain killers.xxx
Oh lyrica was so awful, I also can't take morphine or any of those opioid drugs or codeine, but the only things I do take are like you slow release tramadol and paracetamol.
Not sure I want to sit through more patronising well being courses if that was the standard today. They have some course which takes all day that they want you to do before they do anything else, but I can't just keep taking hours off work to attend stupid thing like that. I don't find them beneficial to do group work, it is not me. I have been managing for 6 years while working full time, so I may just continue the way I am.
Ahhh man - I remember all of the human resources consultants brought in by the various companies I worked at, and they ALWAYS wanted to do group work... yuck, ick, hurk. Not me either
No I am not terribly interested in more information. I have done heaps of research and reading and watched the movies etc etc in the last 6 years . I just couldn't sit there wasting my time thinking of all the work I have to do back at work. I am also not in to touchy, feely session with psychiatrists or group sessions. Just no for me.
So what did you do, go to the appointments and give up any privacy you had or refuse to do the random drug tests? I am seriously thinking of just cancelling any appointment they send me as it is a huge invasion of privacy and if I go I risk every other specialist I see in the hospital thinking I am a junkie every time they view my pathology results when they see those drug tests.
That is sad as patients we are forced to do such demoralising things. This is the only bulk billed pain clinic otherwise it is big $ at private ones. I am still on two minds but may just go for the first appt and say these are my terms, no random drug testing, no psychoanalysing I just want to talk physio and drug therapy. But I'm not keen to change drugs either as this is working for me at the moment. They will either accept it or they won't and throw me out.
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