Question: I had my usualy weekly/fortnightly apointment with my GP today and after today's appointment I've decided I'm changing dr's plus I'm needing some advice. I got home and have spent the afternoon in tears about the whole appointment and even upset over points of view from some fellow members of a local support group. I've had a long and complicated history over the last 3.5yrs and very sorry for the long story.

I hurt my back just over 3.5 years ago, as I as getting out of bed I stretched and twisted the wrong way and ended up with a very large central L4/L5 sequestrated herniated disc. I've had back pain since I was 12 years old and has gradually gotten worse over the years until I hernitated it badly which in the end required surgery and Im still having ongoing leg, nerve and back pain. Herniating the disc also triggered off Fibromyalgia (wasn't diagnosed until Aprill 2011) so have been suffering badly since that day. I've had to give up my job, ended up leaving the family home as I was having ongoing issues with family regarding my health, became homeless, had to declare myself bankrupt and struggled but finally got on a Disability Pension but have managed to get thru it all witha smile on my face.

My issue to day is that I saw my GP regarding a pain management course that my pain specialists adviced me to attend (well rudely told me he was going to make sure I did it). I live in the country at the moment and the nearest big hospitals or pain clinics are in the city and for me that's about 3hrs travel (200km) just to get there. I had spoken to a pain specialist from the city via a telehealth appointment via video conference. He advised me to attend a 2 day pain management course run by the clinic and also made changes to my meds which I thought were rediculous at the time but agreed to try. I really wasn't 100% sure that I would be able to attend the pain course at that time due to suffering from bad fatigue and exhaustion from the FM, I can't sit it a car for a long amount of time, plus when I drive to the city now I have to take someone with me otherwise I fall to sleep while I'm driving. I have no family or friends in the area or that I could stay with and financially unable to pay for accomodatoin. After receiving the information about the course I found out that the course is run over 2 days, 8 hours each day over a Tuesday and a Thursday. For me financially and physically it was just not something I could do and my dr's were fine with that. I found out that my local hospital also run a pain management course but have no pain clinic itself. I got a referral from my GP and had an interview last week to see if I was suitable for the course. This course is run over 6 weeks, 3 days a week (Mon-Wed) and approx 3 hrs each day). The trip to the local hospital is about an hours drive for me plus I'm moving in 15 days so that is going to be physically stressful enough for me. I met with a Physiotherapist and Mindfullness/Wellbeing Coach and basically told me what's involved in the course. I said straight out that I would be unable to do the course as I'm moving in a few weeks and would not be able to handle the course aswell. I also said that if I was not moving then I still wouldn't be able to physically complete the course. They only want committed people to attend the course who can attend every session over the full 6 weeks. I told them with my Fibromyalgia I struggle with the fatigue badly. I only go out once or twice a week and that is to appointments, visiting or shopping. These appointments are usually only 3-4hrs XXXXXXX and always exhausted by the time I get home and take a day or 2 to recover. A trip to my local GP takes approx. 40mins to get there, when I move it will be only 6mins. So between appointments and the recovery time I struggle to fit in basic housework. I'm actually getting government help with some household jobs as I'm struggling to keep up by myslef. I'm single, live by myslef and have no family or close friend support. I have started a local Fibromyalgia Support Group which has been fabulous. Anyway between my usual appointments and housework there is no way that my body would be able to cope with 3 full days a week attending the pain course and not for 6 weeks. Plus they only want people to attend if they are comitted to attending the full 6 weeks.

I'm side traking here for a moment but after hurting my back I was on painkillers but didn't have a good reaction to some and was put on Endone ( Oxycodone) about a month before I had surgery (Sept 09) on my back. I continuted to take Endone after my surgery and for about a year and a half aftwards. I had been taking both but at one stage I did stop the Endone due to bad itching and later went back on it as the pain was getting unbearale with Tramadol which has really has never done anything from day one for my pain. Three months after having the surgery I was feeling very unwell and in a lot of pain, my blood tests come back with my ESR of 104 and dr's had thought I had an infection. Luckily there was no sign of infection but was having body pain plus back pain so I was also put on a Duragestic Patches. After having ongoing pains in body, back and joints my Rheumatologist decided about a year and a half later of having the ongoing pains through out my body and back and my high ESR results to stick me in hospital and run tests to work out what was going on. I was in hospital for a week of tests and that's how I got my diagnosis of Fibromyalgia but they still no idea what was causing the high ESR. I was then taken on the Duragesic patches when I was diagnosed and then about a month later the Health Dept stopped my Endone as according to them I had been on it too long and as it was an immediate release pain med and was not indicated for long term chronic pain. I was basically taking the Endone for the back and joint pains at night and was the only thing that was actually helping. I basically haven't found any meds that have helped a lot with my FM pain either so asked my Rheumatologist if I could get anything stronger for the pain as the Tramadol was doing nothing but was all my dr could prescribe for me. He wrote to the Health Dept but he adviced me that the only chance of me possibly getting anything is to go through a pain clinic.

With my appointment today I basically explained the situation to my dr and didn't get a very good response. He said that taking pain meds was no way to control my ongoing chronic pain and is not good for longterm. I can totally understand that but for the last 18 months since the Endone was stopped I have been in pain!! I basically had a near normal life when I was on the Endone and the patches and now Im struggling to do everyday things, nevermind actually doing those things that I like and can't because of the pain. He said that's why I need to attend this course to learn to cope with other ways to control my pain and not to rely on pain meds as he doesn't want me to become and addict. I've not had good pain control since hurting my back and have always thought that my dr hasn't taken my pain seriously. I was only taking the Endone at night to help with sleep and for those days that really required it. The Tramadol was doing nothing for my daily pains so I really had no good pain relief throught the day. As Endone is an immediate release med I only had relief for about 3 hrs so was needing to take more over that period at night to help. I was really after something that was longer lasting. I'm now on Tramadol SR which I've found a lot better but still does nothing really for my pain. I was nearly in tears the whole time as I thought that he didn't listen to a thing that I was actually saying today. I re-injured my back on Friday just gone and have been having really bad back spasms and asked if there was anything I could take that would help. He gave me the whole lecture about needing to learn to control my pain in other ways. I can totally understand that but at the moment I'm not getting any pain control with what I'm taking. I then mentioned that I hadn't been getting any relief from the tramadol since day one (which I've mentioned lots of times) and what the changes that the pain doctor has advised with my pain meds hasn't helped, in fact it has made things worse plus he wsa really rude and arrogant when he spoke to me. I asked for another referral to see another pain specialist but got the whole lecture again.

After todays appointment I basically left and have pretty much been in tears all afternoon. I've been seeing my GP nearly every week or fortnight for the last 3.5yrs and over the last 12months things have basically not improved and not gone anywhere. I'm also having ongoing problems with my blood tests and ESR. I've been mentioning that when my ESr goes up, that's when my joint aches get worse. He recently went away on holidays for a month and I saw a lovely new dr that has just started at the surgery. I had mentioned that my pains had gotten worse and about my ESr. Asked him to do another blood test an my ESR was really high and my CRP was also up. He put me on steroids for 9 days and of the last 3 days, I had no pain and stiffness in my joints which I can't remember when i last felt like that. Had mentioned that to my dr when he came back but never said anything. I also have family members on my dad's side that have autoimmune conditions, 2 have Ulcerative Colitis and one has Lupus so I know I have something else going on besides the Fibro. I also know that FM isn't an inflammatory condition and doesnt' cause my ESR to rise. I have an appointment with my Rheumatologist and will be discussing this along with the pain clinic with him this coming friday and hope he does some more investigatinos to why my pain increases when my ESR does also. It' sbeen going on too long and I've had enough. Iv'e also been having issues with my left knee since I was 10 years old. I've played a lot of sports since I was a kid and through my teenage years and have alsways had pain and the feeling as though my knee is going to give way. Plus i also have night time pain behind my kneecap and a horrible grinding noise. I've also mentioned this to another online dr (Orthapedic Surgeon) plus the ERS issues and he too believes that this needs to be investigated more as soon as possible. I've been telling my dr about my knee problems and he has just says that it's just inflammation or jsut to do with my Fibromyalgia and looked no further into it. When I have appointments with him now he basically sits at his computer and just types, if I ask him questions he sometimes doesnt' answer or just says its all to do with my overall pain syndrome. I've also been having ongoing stomach, indegestion and heartburn problems aswell. I was endoscopically investigated last year and was told it was all fine. I;ve mention this to the new dr that I had been seeing and he has suggested things I should try and changed my meds which has helped a lot. He said if things don't improve over time then would more then likely need another endoscopy to see whats' going on. I recently looked at the report from the last endoscopy and it has said that I had mild acid refulx and gastritis. The new dr has suggested things to help with this, answered my questions and yet in the last 6 months that I've been mentioning it my old dr, he's basically said nothing and never mentioned the mild reflux or has said what could help.

I've been thinking over the last 6 months of changing dr's but havne't as I"ve had a long complicated history. Since seeing this new dr a couple of months ago and actually listening to me and after today's appointment, I've decided not to see my old dr again and to go with the new dr. My support groups are also on Facebook so we chat everyday and I had mentioned what had happened and how upset I was over the whole situation and things haven't gone so good either. I mentioned to them that physicallly I would be unable to commit to doing the full 6weeks of the pain course when I'm struggling everyday jsut to keep up with everyday living. They have also agreed with what my dr has said and told me that I would end up as a drug addict and inthe long term that stronger meds such as with the opioids, I would end up with more health problems longterm. They've told me to do the pain course but I know that I wouldnt' be able to do the full 6 weeks and they onlly want people who can commit to do the full 6 weeks to attend the course. I'm just totally devestated about today and have no idea and need advice or just a professional opinion. I've been trying for over 18months to get some stronger pain relief that acutally helps with my pain so I can have a near normal, comfortable life again. i know my life is never going to be painfree, I've been living with pain since I was 12 years old and have learnt to deal with that and what works best for my body. I also asked and recieved the course booklet with information about what's involved in the course from the 2 day clinic that run by the pain specialist. I've read the 81page book and what is written is all what I've read before. I spend my days researching and finding ways to cope and things that help with Fibromyalgia so it' snot as if I know nothing. I'm jsut totally confused as what to do next with pain meds and the course. I'm seeing my Rheumatologist on friday and just hoping that he is understanding and I don't have to go through what I went through today.

Hi,
Thankyou so much for you reply, it's just good to hear that I'm definately going in the right direction and to have someone listen. It's been so frustrating that dr's just won't listen and believe me. I see my Rheumatologist this coming Friday so I'm hoping he will be as understanding and listen to what I have to say.
Thankyou so much and will let you know of my outcome.
Thankyou. xx

I'm so upset atm, have jsut received a phone call from my Rheumatologist's receptionist (his wife) and have been told that my appointment for this Friday has been cancelled. I've had this appointment for over 6 weeks and apparently after my appointment on Monday my old GP who I am no longer seeing had written a letter to my Rheumy saying that I have refused treatment and will not see a pain clinic. I had tried to explain the her that I hadn't refused my treatment that the pain clinic had recommended, it was just that I couldn't attend the pain clinic courses.

I was seeing my Rheumatologist as I have been getting my Lyrica scripts from him as in Australia it isn't subsidised by the government or cheap but through the pain clinics at the hospital we can get it at concession price that is more affordable plus it is not recommended for treatment of FM or Neuropathic pain. I had gotten a script from the pain clinic for the Lyrica but because I live in the country it has to be posted to me and for them to do that I have to pay for the medication and postage before it is sent. When I was getting it through my Rheumy's hospitals pain clinic, it was sent to me and an account was also sent out so I could pay for when I was able to since I am on a Disability Pension and struggling to pay bills. I've run out of the Lyrica which helps with my nerve pain in my leg from my herniated disc and was seeing my Rheumy to get a script for it from him this Friday. I had been waiting over 7 weeks for this appointment as he had been out of the country and wouldn't write a script for me unless I saw him in person. I was also going to see him about my blood tests regarding my high ESR which has been thourougly investigated in the past with no answers. I had recently been on the steroids which helped with my pain and also lowering my ESR which my dr wouldn't look into further and just kept telling me to see my Rheumy. So now thanks to a dr who I will no longer see, he has written this letter and now my appointment has been cancelled and I cannot see my Rheumy at all. I tried to explain to his wife that I was going to see him about other things besides the script and pain clinic and she turned around and said that he no longer writes scripts and I would have to travel to the city (about 3hrs to get there for me) just to see another dr to write the script. She has given the wrong advice on more than one occasion and I can't get a message to speak to my Rheumy. I'm so upset and frustrated and will try and see if I can contact him though the hospital tomorrow as he is the head of the Rheumatology Dept.

I rang my old dr's surgery and spoke to the lovely receptionist who knows me well and she tried to contact him for me but was no answer on his phone. I'm hoping to get an answer from her tomorrow with what has happened as I can't get an appointment with my Rheumatologist at all thanks to this letter he has written. I'm seeing a new dr but he's not back from holidays for another 2 weeks. I didn't really have such a good appointment with my Rheumy last time I saw him and if this appointment went bad than was also going to get another referral to another Rheumy. I'm just so frustrated at the moment and have no idea what to do.