I went to my long awaited appointment this afternoon.The building looked like it was from the future and echoed!
The Dr definitely needed his people skills refining.I felt really unsettled.He barked out questions to me as he typed away and then looked sneeringly at my crutches then said" I don't mind you using crutches (well thank you) but elbow crutches" (I use gutter crutches as I have a weak grip and cant put weight through my hands)
then he had a go because I told him that physio had told me to stop the hand exercises because of the pain.He said I have to do them and buy stress balls to strengthen my hands.
All the time he spoke to me as if I'd committed the ultimate sin! He had the nerve to tell me that there is no cure for fibro (which of course I know) and said that He doesn't think it is fibro as I have a lot of other medical problems that have the same symptoms.(as I was diagnosed by the rheumatologist and I had the letter with me,it wasn't his place to dispute it! By this point I was almost ignoring him so I didn't care!
He said to stop taking the Amiltriptaline and prescribed pregablin 50mg 3x a day. And the best part of the appointment,I don't have to see his cheerful face again!!!!! Oh and he also told me most vehemently that I HAD to get my depression under control and I had to self refer myself to a psychologist. I really can't understand why I was in tears on the way home.!
The thing is that I forgot to tell him about my aortic valve stenosis and I think that you can't take pregablin if you have a heart condition so I have to wait til I can ring the Dr in the morning to check before I take them!
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Amanda
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amanda, that must have been dreadful! some medics have no concept of people skills, - the fact that he works in a pain clinic doesn't allow him to cause it physically, mentally or emotionally.
So that was about as much use as a chocolate teapot then! You build your hopes up that these specialists will be able to do something wonderful and then ..... zilch.
The lack of people skills amongst doctors is a real problem isn't it?
A chocolate teapot indeed - poor you what a worthless appointment. My sympathy to you. It is so true we go in thinking at last someone who will help and once again come out with our dreams shattered. Do talk to your own doctor before tryi ngg the medcine. Make sure it is a good idea to change!
Hi thanks ,I have just left a message for a Dr to check i can take the new meds. \i think that I felt worse yesterday because i was due my pain meds and it had taken me over an hour to get there on my mobility scooter! never mind,he discharged me so I don't need to go through that again.still impressed with the building though!!
I think it's about time more staff got reported, they wouldn't need brushing up on their people skills but their CV skills instead.
why should we have to pt up with it....... oh.... you forgot to tell him about your condition.....why didn't he already know ????
sorry you had to go through that. if he was a pain specialist he should know that stress makes pain worse, I'm so glad you haven't got to go back again. but do speak to your GP again. was thinking I need to go back and see the pain clinic again but I think I've been put off now. I feel I need my pain meds changing but scared if whatever they suggest would I be able to go back to what I am taking although not as effective as they used to be, they are the best yet. why do they keep putting our lives into turmoil when the are being paid..... large sums of money at that , they should be trying to help us not turn us into quivers wrecks....not saying that's you, but that's how I feel.
I describe the mental health services as, as much use as a chocolate teapot' I am still waiting to be seen, I should say spoken to, I insisted on a face to face assessment, however they normally do that on the phone. no way would they get the proper picture by telephone assessment. it's fine if you say either you are going to take your life or your drink/drug abuser! if you nave a 'normal' life you just gets shoved to the bottom if the pile and. anyone with an ounce of sense and can string a coherent sentence together doesn't need their help.... maybe they are too embarrassed it would come across that they need the service more than we do!
I insisted that I had a face to face assessment but 15 minutes before leaving the house, bearing mind I had to get up much earlier than usual which is harder on its own, they cancelled the appt, so I got my husband to drive me to their offices about 25 miles away and insist that I was seen. (sorry that bit was agreed phone first, we didn't just turn up) but that was on 9th August, I am still waiting for any help. I have lost my strength to fight any more. every phone all, no matter who it is, I end up in tears and and am sick of taking diazepam just to stop me shaking. I have been taking them since 12 July and you are only supposed to stay on them for a few weeks. they are already starting to become ineffective, so yet anther trial and error to go through to see what works.
if all the various departments of the NHS were to come back together and start communicating with each their , the treatment we get would be more effective and in the long run cost the NHS less in time and money.
sorry to ramble, but it was seeing the description chocolate teapot as I'm sure I wrote that possibly on this site, the other day and I am beginning to wonder how many other departments can be described in the same way.
thanks for listening... good luck with your treatment, I hope they sort something better for you xx
Hi, just felt I should reply about your shaking. I have had that for months, also muscle weakness in my legs, anxiety & depression much worse. Had a blood test at hospital & within hours had GP on phone telling me my thyroid gland has gone berserk! Way way too overactive, even making my heart beat much faster. Please get yours checked!
I'm now on tablets awaiting a hospital appointment, I'm gradually working my way around all the departments! Looking forward to feeling much better in a few weeks when meds kick in.
thanks for replying, sorry I made this thread so hard to navigate, something must have gone wrong with my broadband whilst I posted, but it then wouldn't let me. HU seem to think its coz I use an iPad, but it's all my fingers can cope with at the moment. thanks for the info on the thyroid test, but my GP and even m sleep consultant has had it checked. and each time it's supposedly normal. that's the trouble all tests they do come up normal, even an X-ray showing my hip doesn't look too bad, but had they other end looking at the scan done. last year it showed more, nutlike. said the fight in me is slowly diminishing.
I really appreciate you thinking about that though.
hubby is not happy he has just finished work and come home to me still in bed! I got up, even had breakfast, although its hurt my stomach again due to all the stress I started online trying to get some messages replied to and nodded off, before I knew it, it was mid day, then again nearly. 2pm. when he gets up in the early hours I don't even know he's gone out. if only the mental health dept would give me the help I need to get off taking the diazepam without me being a shaking wreck. when the shaking started it was just put down to anxiety but I have had all the blood tests done several times now and nothing is showing within any abnormality. not that I want yet another condition, but sometimes it makes you feel if it gave you the answer to what was wrong then you would be 'sort of' happy. as it is along with anxiety it's the stress on not knowing what's going on in your body. I feel 'awake' now so I must have needed the extra sleep and I didn't go to bed that late.
I think I should get dressed now. I'm running out if PJs to have yet another day PJ day as much as would like it. I need some laundry doing!
I promise not to press post more than once this time. I do hope it works.
maybe a moderator could delete the unwanted extra posts,
I agree totally - I was given all of the info to self-refer to the counselling/psychology services in my area, but refused, as I didn't feel that a 30 minute telephone conversation 'steering me in the direction of online and local help' would benefit me, as I hate telephones, and am quite capable of seeking online and local help! In the end, I went through work and saw a psychologist for CBT.
Sorry to hear that your pain clinic appointment was so horrible, Amanda - these people are supposed to help you, but clearly have no idea of the amount of pain we are in in every conceivable place!
I have finally been able to delete all those extra posts. no idea what happened nor why it wouldn't let me delete them last night. sorry you all had to scroll so far down, but I have sorted it now. thanks for your understanding xxx
Who does he think he is,just because he has letters after his name....I can think of a few letters!!!They dont seem to realize what fibro is REALLY like.
I have been to 2 different pain drs and have found both to be completely useless and unsympathetic. At one appointment my husband had to help me walk/hobble in and I was in a lot of pain...he said because I was so bad that day there was nothing he could do and asked me to make another appointment!!! Another thought it was funny or clever to introduce swear words including the "F" word while explaining to my daughter what fibro is and said he was off to Milan to do a talk on fibro....OMG.....he is getting paid a fortune for doing absolutley nothing as he was way off the mark and in my opinion knows very little about fibro.
What chance do we have??? There are some drs out there who are more sympathetic,but I really think that unles you suffer this awful condition you cannot possibly know how bad it is. I appreciate that you can say that of any illness,but because there is no known cause or cure it makes understanding harder.
One day there will be a cure,I just hope I am still here to receive it.
I think we should start putting complaints in about any bad care we receive,but few of us do (including me) as we feel that we may get no care or be written off all together.
We should also name and shame, and pass on any good names so we can get the care that we deserve.
thanks for the (indignant! ) messages of support lol.I'm having a pygama day today in an attempt to recover from yesterday.I'm snuggled up in my new fluffy dressing gown and bed socks on my electric recliner cuddling the dog (also fluffy!) who hates this cold weather!
I'd been referred there because of facet joint disease causing chronic back ache, osteoarthritis, osteoporosis, asthma + more.
As I sat on a chair he stood behind me prodding & poking as I cried with pain, literally tears streaming down my face. I asked him what he was doing & he replied "nothing"!!! (at that time I hadn't a clue what he was doing, but obviously know now)
I joined the next available course & it did help at the time.
In the copy of the letter he sent to my GP, Dr Moron, (dont know his real name but this one fits!) he said I had Fibromyalgia. I was so angry he could't be bothered to tell me at the time, or maybe he hadn't got enough brain cells to explain it to me!
I've been referred to Pain clinic a few times and after each appointment I've come out thinking what a waste of time - got rather annoyed at the consultant (he was an anaesthetist - go figure) who each time he wrote fibromylagia it was like this "fibromyalgia" - the quotation marks, to me at least, are a give away as to how the doctor feels on the subject (also had a consultant neurologist who every time he said fibromyalgia used air quotes!). I just felt if he wouldn't take me seriously - "here's your hip x-ray, see that tiny spur there, it's OA but it's only tiny". I just told him that regardless of how tiny it was to him, it was causing me a heck of a lot of pain!
if the DWP have now accepted it as one g their lists of conditions, I know when have it in all varying degrees, especially coupled with other conditions,minutes you would have thought there would be some continuity across the whole of the NHS.
I have noticed that in all bar two letters from various hospital doctors, even unrelated to fibro, they will not use the word. I just don't understand!
it springs to mind visions of a leppar wearing a sign around their neck saying contagious or something, it's starting to make me wish I never knew what it was giving me all the pains, I think knowing , and knowing the way it's generally accepted, or not as the case may be across the NHS, makes me feel I'd rather just be ignorant of what it is. one orthopaedic doctor did say to me, what I thought were the kindest words ever, he said "he didn't know much about fibro, but knows that the pain is definitely real! " and even looked up a website for me to check out, but id already found that one......and i wasn't there to see him anything to do with fibro........what a shame they don't all think like that. xxxx
when will these muppets learn that respect has to be earnt i no longer respect or believe a lot that they say but that comes from being mis diagnosed for nearly 30 years and my medical notes mysteriously disappearing when i moved with my parents even tho thiers and my brothers all turned up, trust them only when i know they have my best interest in my mind J
I really think its luck of the draw my first visit to a pain clinic a woman .. Won't say lady ... Told me to stand tall wear a better fitting bra ... I have chosochondritis she was lucky I had one on that day and she shooed me out .. Went back to my gp he sent me to same clinic again saw a man couldn't have been more helpful and he sorted out trigger point injections in my shoulders and neck 3 monthly ... They are wonderful.
Don't give in and go back to this dr ... Go to your own gp and ask to see another consultant at the pain clinic.. Grrr makes me so mad so little gets done right first time for us...
So sorry you got a sh1t head of a Dr, I had a b1tch of a nurse I have vertigo and dissiness she told me I had to stop takin my betahistine I also take ouromorph she told me I had to stop taking that aswell if I didn't need those meds I wouldn't be taking them dossy woman so I ignored her and continued taking them , ah well such is life hope things work out for you. Sithy
I have just been referred to a pain clinic some 18 miles away, but i will go and we can all compare notes. There must be some good medical folk out there?????
Ive just yet to experience them.
Hope youve got over mr jobsworth by now and sending warm thoughts
NN
Dear Amanda, im new to this site and havnt taken part in discussions before but after reading your letter i had to respond to you. I have attended a pain clinic for 27 years due to osteo arthritis and spondylosis and had always recieved the very best of treatment until one day 18 months ago when i had the misfortune to follow a patient in to a top pain man after she had upset him, i know this because the patient concerned was playing up in the waiting room after she came out of a meeting with him something about whiplash injuries whatever ??? well the responce myself and my husband got from him was like walking into a brick wall he was rude and after 27 years of treatments made me feel like a fool i broke down and cried i was so hurt inside, he told me he could do no more for me and i was in the wrong clinic if i needed help ???? yes thats what i thought ( ITS A PAIN CLINIC ) where else do you go and have been going for so many years. to cut a very long story short my husband persuaded me to complain about this senior mans behaviour A BIG BIG MISTAKE and the bottom line was he discharged me from the pain service for complaing. you are not on your own being treated in this way and i know how demorilised you are feeling. I just wanted to let you know that you are not alone on this one. do you by any chance live in the midlands if you do say no more. kind regards from a fellow sufferer Joyce xxx
Hi scottydog,thanks for your reply,That sounds awful,how dare he? I went to Bedford hospital & he was the only Dr running the clinic.I wont be returning.When i rang my GP (who has been very helpful so far) to check that I could take the medication he prescribed,she said that we could have a chat when I see her this coming wednesday,she was surprised that he discharged me.I was a bit surprised too as I have read other peoples posts about going to the clinic regularly,having other treatment for pain and going on courses and attending groups etc.
Thanks everyone for your concern and support,I did enjoy my pajama day and I feel a little better.
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NN
been rejected for pain clinic
fat people only get fibro
PIP Assessment ggrrrr
