Hi has anyone else had experience of trying to get a referral to a pain clinic. After trying amitriptyline , nortryptyline and pentagabin my docor finally referred me to a pain clinic. She thinks I have fibro but it hasn't been confirmed . It took 3 weeks to receive a letter from them , I then had to fill out a booklet answering various questions about my pain, medication and other treatments and also fill info in on diagrams. This was sent off and was told to wait 5-6 days before booking an appointment which was another 3 weeks wait. The appointment consisted of a nurse phoning me to say they had received my pain questionnaire and the earliest they could offer me a 30 min telephone consultation with a doctor was in a further 8 weeks time. I accepted the appointment in shock I had been expecting to get an appointment face to face with a doctor is this the norm. I am so down what am I supposed to do? The gp doesn't know what else to do with me?
I 've got some self help books out the library on fibro and chronic pain do I just pretend the pains not there and it will disappear?
Going to go back to gp but its a 3 week wait for an appointment there too.
I just want to rant at someone.
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kittywitty
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I got a referral to the pain clinic and got my diagnosis from them. I had to fill in loads of questions and diagrams, had an appointment with the Pain specialist, then got put on the one day Foundation Pain course. After that I was offered the twelve week Fibromyalgia Pain management course which was brilliant. After that I was reassessed and offered 8 sessions of one to one CBT.
Sorry, pretending the pain isn't there won't make it disappear but CBT does help how we think of it. I would ask if your Pain clinic runs courses you could attend. It doesn't seem that having telephone appointments makes sense to me. I did have to wait for the courses but they were worth waiting for.
Thanks Jilly I've already done CBT course which helps how you think about things. I'm just hoping that the phone consultation will lead to a proper consultation and hopefully find out what my pain is due to.
How can anyone pretend that pain isn't there is beyond me unless your very good at blocking pain, I went to see a lady DOC and asked me to some exercise and goodness I shot through the roof so I asked about pain clinic so she referred me to physiotherapy gentle hugs,Ros xoxox
I am so sorry you are experiencing such pain at the moment, have you tried seeing another GP. Also you may find taking our information factsheets about medication for Fibro with you, as you can download and print them. All the medications discussed can be found easily from the links within this FAQ link;
Other than this you may wish to consider taking a member of your family with you next time and/or seeing another GP. If you still feel your Healthcare is being dismissed you can speak to the Patient Advice & Liaison Service (PALS) and/or write to the Practice Manager.
I was referred by my GP to pain clinic when I asked about it last year. I got an appointment quite quickly but this consisted of a group session (based at a mental health hospital) to see if everyone there could get something from attended pain clinic and after a long talk about what pain is, (like we dont know already) we all filled out questionaires. A few weeks later I got a phone call interview from the pain clinic to see if I was still interested and if I would qualify to attend pain clinic. When I did eventually get what I thought was an appointment for pain clinic, it turned out that all they were interested in was my mental health. I was then told I was not in the right frame of mind to attend pain clinic so they thought I wouldnt get anything from it and I was discharged. I have heard nothing since but Im still in pain and not depressed! It seemed to be a money saving exercise to weadle out the wheat from the chaff and probably cost the NHS more than it saved. I suppose it keeps people employed but it doesnt help us who are in pain. Rant over. gentle hugs Joolz.x
I am so sorry to read that you have been struggling so much with your pain and getting appointments, and genuinely hope that you can find the answers that you desperately desire and deserve. I must admit that I have been very fortunate with my appointments, and my referrals, but this isn't the same for everyone sadly.
That's ridiculous. You may have a wait but I have never heard of a phone consult? I'd just keep calling everyday and maybe if you bug them enough they'll make you an appointment as they should have already done. Hope you get in soon sweetheart!!! xxx Mitzi
Yes I thought it was a step too far aswell, how can someone assess me over the phone? Guess I am going to have to be more persistant in getting a face to face appointment. Thanks to everyone else for their info and support.
I stumbled across this the other day, I know it's about referrals but maybe if you have it recorded about reuesting to be seen in person at the pain clinic this may help?! I am presuming!
Hello My doctor told me there weren't any pain clinics I could go to.
I found out after self referring to physio and an advanced physio getting a back scan; that there's one in a nearby town!
She referred me and it took about 3 months to get a phone call to interview me and arrange an 'initial appointment '. I chased this up to get it. Which took a couple of months, which turned out to be another assessment by a physcologist. To be put on a waiting list for an online(my choice) group of 8 weekly meetings. But there wasn't a course starting for 3 months and it was full, and she didn't know if I could get into the next one. She wouldn't give me a date as" people then keep ringing to find out when they will start" ???!!??!!? The above was the best answer I could get, after her initially agreeing it would be this year (in January!)
Try curable app. Speak to FMA UK if you are in UK. There are books on Fibromyalgia, explaining pacing your activities. Also Manage your pain by Dr Michael Nichols, Dr Allan Molloy, Lou's Tonkin, Lee Beeston. Overcoming Chronic Pain (CBT mental aspects of management) by Frances Cole, Helen MacDonald, Catherine Carus, Hazel Howden-Leach. Curable App (14 days three trial). The Way Out book Alan Gordon and Alon Ziv try and get a counsellor to support you, and local disability charities.
Hi kittywitty, it is frustrating isn't it, the endless cycle of waiting. On a lighter note I had a telephone appointment with a physio....this bewildered me..... how on earth would they be able to gauge what I could and couldn't do if they couldn't see me.?? I was right...they really couldn't but still proceeded to give me exercises to do which they emailed over to me with a further instruction to stop doing them if they caused me pain! Hahaha....they clearly dont 'get' fibro do they! Best wishes.
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