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Suffering from back pain. MRI showed herniated disc with fibromyalgia. How can I manage this pain?

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I have already posted this question a couple of days ago and wanting another opinion. I have received a fabulous respose from the original dr who answered my query but also wanting another so I can print it out and take along to my appointment with my new dr.The more responses from different dr's than the better the chance I have of someone listening to me. In the last 6-12months I havne't had any respose from my dr whom I've been seeing for the last 3.5yrs and this site has been fabulous, it's finally nice to have a doctor who is willing to take the time to answer my questions. This is my original query that I posted before:

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.
Posted Sat, 18 Aug 2012 in Bones, Muscles and Joints
Answered by Dr. Aparna Kohli 1 hour later
Thanks for writing in.
There are a few issues I would agree with you on: You need to switch doctors ( if you want I could make a case summary for you and you could take a print of it and give it to your physician); second, there is a probably autoimmune cause of the pain ( we could be looking at lupus, rheumatoid arthritis, sacroilitis and several other issues as well). You would need a detailed workup including an XXXXXXX level, a Rheumatoid factor and a Xray of the lumbosacral spine as well.
As far as the management of the pain is concerned, I think you could have a pain free life. I am sure Encodone makes you feel better but management of pain is a complex thing and pain killers are just one part of the whole process. I can personally recommend a breathing technique called the XXXXXXX XXXXXXX to you which should immediately make you feel better. You can ask someone about this technique at a Art of Living follow up centre near you. The closest one to you is at Perth.
For the pain management class, consider getting an online course. Here's one I looked up for you WWW.WWWW.WW Let me know if you need any more help
Above answer was peer-reviewed by
Follow-up: Suffering from back pain. MRI showed herniated disc with fibromyalgia. How can I manage this pain? 54 minutes later
Thankyou so much for the reply. I'm trying to get as much help as I can at the moment and everything and anything is appreciated. I'm also seeing a new dr whom I've seen a couple of times now and he has been fantastic. He has ordered the last few blood tests and the trial on Prednisolone and has actually listened to what I've had to say. He is currently away on holidays at the moment and will not be back for another 2 weeks. I'm hoping to get a lot further in this next appointment with him than I've gotten in the last 12 months with my previous dr. I was suppose to have an appointment with my Rheumatologist this coming Friday but received a phone call today from his receptionist saying that my appointment has been cancelled. I've been waiting over 6 weeks to see him and was going to discuss my last blood test results and hopefully he would look further into it. Apparently my previous dr (I saw him on Monday and now I am no longer seeing) wrote a letter to him saying that I have refused all treatment from the pain clinic and refused to attend a pain management course. I did explain to her that I didn't refuse the treatment the pain specialist had given me, it's just that I can't attend the pain management courses. So now I cannot make another appointment with my Rheumy. I'm hoping to get this problem sorted out tomorrow or I will be getting a referral to see another one. I didn't have the best of appointmnets with my Rheumy last time so was considering seeing a new one anyway if I didn't get anywhere with this appointment. I was also seeing him to get scripts for my Lyrica which I have jsut run out of tonight but now can no longer get one from him according to his receptionist.

I have previously been tested for Lupus, RA and a lot of other auto immune diseases as my ESR has been extremly high in the past (104) and had numerous tests after test. I also have family members on my dad's side who have auto immune conditions aswell, 2 members with Ulcerative Colitis (have had a colonoscopy and has been ruled out) and one with Lupus. All my blood tests in the past have all come back negative like XXXXXXX and RF. Although the last test for my XXXXXXX came back that it was weakly positive. I have also seen a Haematologist who has come up with no answers either. After a week of testing in hospital my dr's (Rheumatologists) had came up with the diagnosis of Fibromyalgia. I know that I do have something else going on besides that aswell but because all other tests have come back negative in the past no one will look further into it. I know that I could still have one of them even though the tests may be negative.

My recent blood tests with the new dr did come back with high numbers again, ESR 63 and CRP 15. I had asked him to do the tests as when my pain level increases, especially my wrists and finger joints my ESR levels go up. I've been trying to explain this to my old dr for months and he has done and said nothing. This new dr recommended taking the steroids for 9 days and on the last 3 days of taking them I had basically no pain and stiffness in my wrists and finger joints. I can't remember when I last felt like that it's been so long and the day that I stopped taking them the pain had come back but wasn't as bad. After taking the steroids my ESR dropped to 45 and CRP 9. I was hoping to bring this up with my Rheumatologist this Friday but now have no appointment thanks to my old dr. I'm hoping that I can still get an appointment with him otherwise I'm going to have to wait 2 weeks before I can see my new dr and get a referral which could take another couple of months. Plus I live in the country and for me to travel to the city (Perth) is 3 hrs' drive to get there and I can't do that. That is why I can't do one of the pain clinic courses. I'm just hoping that there is another Rheumatologist that does come down to the country like mine did.

I was also hoping to get another referral to see a pain specialist at the pain clinic as I saw the last one via video conference from the city and he was extremely rude. Also the changes in my meds that me made actually made my pain worse or didnt' work at all. I'm needing the stronger pain meds of Endone (oxycodone) for the breakthru pain. Not for the FM pain itself but for my back and joint pains, it was the only thing that helped in the past until the Health Dept stopped them due to me being on them for too long. I also found out that my old dr had received a letter from the Health Dept regarding the length that I was taking these pain meds and he never replied or contacted my Rheumy to confirm my dose or what I was taking it for so that's why they cancelled my prescriptions. Another mess he has caused!! He hasn't taken my pain management seriously from the beginning since I saw him 3.5yrs ago.

Thankyou for your help!!

I will definately look into that or other pain management courses online. No one has even mentioned them to me as I can't attend them in person as it is just to much for me to cope with.
Answered by Dr. Aparna Kohli 15 hours later
Thanks for writing back.
I do understand your position. Till you get an appointment from a rheumatologist, I think you can get an opinion from one on our site. We have experienced rheumatologists and you'd be able to definitely get an opinion in 24 hours. This is the link
If your family physician is actually dealing with this in such a manner, its high time you switch doctors
Let me know if you need any more help.
Above answer was peer-reviewed by
Follow-up: Suffering from back pain. MRI showed herniated disc with fibromyalgia. How can I manage this pain? 13 minutes later
Thankyou, I will definately seek their advice.
I contacted my Rheumy today to see why I can't get an appointment and what to do about getting another script for my Lyrica as I have run out. The Rheumy had rang my ex GP today and after speaking to him I can no longer make an appointment to see him or get a script now for my Lyrica until I attend a pain management course. I had tried many times to explain why I can attend to my GP but he didn't want to listen. So now I have no way of contacting or telling my Rheumy why I can't attend the courses. I see my new GP in a couple of weeks and will be asking for a new referral to a new Rheumyatologist aswell. This may take upto another 2-3months or even longer before I can see a Rheumatologist again to get some answers. I will definately ask some advice from the Rheumatologist on this site.
Thankyou for all your help and advice.
Answered by Dr. Aparna Kohli 1 minute later
I am glad I could be of help. Let me know if I can be of further help.
If not, please close this discussion.
Above answer was peer-reviewed by
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