My letter from pain clinic to my g.p

The following is my letter from the pain clinic to my G.P

Please can I have all your thoughts....

Dear Dr foster

Thanks for askng us to see Marc. He comes complaining of widespread pain for the past year or so. He said he began attending yourselves about the pain around four or five months ago. He describes pain in the hips, knees, thighs, and ankles, the neck to the shoulders and from the elbows down to the wrists, low back and buttock bilaterally. He described the pain as "tight" and "tense". He says he is currently in a situation where he cant cope with the pain.

He fatigues easily, even after low exercise rate and has a poor sleep parttern and says he wakes unrefreshed.

He has quite a limited lifestyle. He lives with his mum. He gets up between 0630 and 0900 and then tidied the house if he has the energy and his pain allows. He then goes to get his daily prescription and spends the rest of the day "doing nothing" which usually involves watching television or surfing on the laptop. He goes out very little.

He says he has tried various forms of excercise including swimming in the last couple of weeks but he finds that when he exercises he is much worse for several days afterwards.

I note that you have done bloods and inflammatory markers which have come back reassuringly normal.

He has a previous history of mental health problems and I understand he has a diagnosis of borderline personality disorder for which he saw Dr Hayward in the past but is now discharged from his service.he is on the waiting list for Dialectical behavioural therapy which I understand to be a varient of CBT.

In the past there have concerns around codeine misuse which I understand had been in relation to buying over the counter codeine. He days he has not used any other illicit medication in particular and has never bought street drugs.

In the past he has held down a job initially as a health care care assistant in the stroke unit here, then as an office worker with allied health care organising care rotas. I understand he had to leave paid work because of mental health issues because of mental health issues.

I agree the diagnoses here is Fybromyalgia. Betty Little and I saw him together and spent a considerable amount of time going through the evidence base and also our experience of treating fybromyalgia. He is already on correct therapy with pregabalin, naproxen and paracetemol. It is doubtful that his codeine and nefopam are significantly helping his fybromyalgia. He is also on propranolol for anxiety and omeprazole for mild GORD.

As you know the mainstay treatment in fibromyalgia are anti-neuropathics, which he is on, and then psychological apprroaches such as CBT or other behavioural therapy and graded exercise. We discussed other drugs including tramadol, MST and oxycontin. Duloxetine and amitryptyline. I explained that the evidence does not favour opioids in fybromyalgia and our own clinical experience is very similar.

Marc has been on the fybromyalgia forums and brought various suggestions to the table including accupuncture, which we have found to be 50/50 successful in fibromyalgia and we had a somewhat difficult discussion around the fact that there is no cure for fybromyalgia which he found rather bleak and we were unable to offer any cure or significant medicines change.

He id already a member of live active but doesn't seem to make much use of it, and he is on the waiting list for behavioural therapy which I understand to be aimed at his borderline pErsonality disorder, but which is bound to have some general amelierating effect on quality of life and ability on quality of life and ability to cope with pain if successful.

I am afraid the pain service has anything else to offer this gentleman. However he did ask for a second opinion. I am happy to arrange that and he was content to see one of my colleagues here in Perth.

Kind regards.

J bannister.

I feel his Dr has neglected his duty of care towards me and eould really appreciate feedback. Thanks

there is no magic pill hun he cant give you what he hasnt got .

any painkiller will eventully stop working .and will have to be changed and or up dosed . the higher you start the less you have for manouver 

to higher does of some pain meds can stop you breathing ,you only have to look at what happened to micheal jackson  thats what killed him over dose of pain meds .

 

If I'm being honest I really don't care. I would go with that if it meant relief from the pain (if even temporary) surely you can understand that. And what's his excuse to not offering me accupubture. I wad hoping you guys would be backing me up.

Regardlesss though Bannister is getting reported to the GMC.

i am not backing you up or dismissing you ,we all deal with pain in a differant way , like iv said before iv had it for 10yrs  iv just excepted it . 

and cope with it in ways that suit me . iv just had a 4 week pain flare where the pain has been 10+ iv made it out of bed to my chair and slept most of the day simply because the pain was so over whelming .and yes in those 4 weeks i could have easly have checked out.

then i woke up one morning and the pain was about 3 i sat there poking myself hard with my finger going it doesent hurt hardly at all  . iknow it will be back and next time it might be worse . but i;l deal with it then

.in the mean time iv got the I B S  the anxety, palpatations ,sweats,dizziness depression, 

nausea, and a knee that keeps giving out .to deal with .

theres no right or wrong way just your way . the way that suits you .if the doctor wont help you .then you have to find away . 

do you get bennifit . i do well till june . god knows what will happen then

i use my bennifit for my accupunture iv never been offered it for free either the last 4 weeks iv had to have 2 sessions aweek il be able to drop to one again soon  . we are all in the same boat . 

 

Well you are clearly stronger than me. Basically I have no future. I am just at the beginning of this journey of hell and its only going to get worse, I cant allow this to happen. I am not built to deal with this level of pain even at tho stage. I admit it I am weak. I am a failure. Seriously what's the bloody point.

I come on here for support but am offered no light at the end of this very very dark tunnel. All doom and gloom. No hope.

Soo feel for you Marc...I don't understand why the dr hadn't tried you on Amitriptilyne yet..(or maybe he has...) it was used as an antidepressant for a long time-rather an old med....they found out that it was stopping the pain at the nerve end, hence stopping it from travelling to the next nerve and stopping the pain In your body...so they now use it as a pain management med, must also help somewhat with the depressed state we easily find ourselves in......( I do believe it can be addictive though for certain people.) I have been on 25 mg every night about 8pm....great sleep, no pain..for 15 years now...if my memory serves me right...I was given a much higher dose originally, but it didn't like feeling like a zombie all day. So I dropped them myself.......dr told me I would probably get detoxing Symtoms-I did.....but it was only for a few days...now I'm right...saying this is easy for me I know..I've had Fibro for over 22 years now..I also have Sorgrens Syndrome, asthma, arthritis all autoimmune issues, plus others..I only say that to say this.....I have learned how to look after me...yes..it did take a few years though..it is just soo important to have strong caring & loving people around you..if you haven't then get some....or drop some who just don't care..you need positive validation...to have what you are suffering from, acknowledged by your piers/family etc...trying to stay positive in a really negative situation is very powerful..the less stress really does greatly help, but it's just too hard when you are soooo stressed..I just want to encourage you Marc..what you are going through is real and yes rotten and yes you were not made for this suffering, but you have it unfortunately..and let me say I testify to this..IT DOES GET BETTER..MUCH BETTER..GOES INTO REMISSION..THEN YOU MAY GET FLARE UPS..I know someone who has had no Symtoms at all for years..and were very very bad once..there is a saying: " if you do the same thing all the time you just get the same results" ..and that was soo true for me...I began to realize to  Expect different results..I had to start doing things differently...and that I did..and now I am sooo much stronger than ever before..you can certainly do this too...yes it may be hard,,but when you come through the other side of your horrific experiences-( and you will, we all do)  it will make you soo much stronger and you will be enabled to help others who need support and encouragement like you do right now...it's like play it forward.....through your experiences...you will be sooo strong..you will look back in total amazement at just how you achieved what you have...I am a Christian, so I have a lot of positive supporting people in my life especially from church...I have a very strong faith and that has undergirded all my issues over the years...I gotta say, I just don't know how anyone handles all their struggles without the knowledge go Christ..I really hope and pray things will turn around for you really soon, but please don't loose heart...it could be just around the corner......remember YOU ARE NOT EVER ALONE, THERE IS ALWAYS SONEONE WHO FEEKS YOUR PAIN AND LOVES YOU UNCONDITIONALY...be blessed Marc.....:-) xxx looking forward to hearing from you again soon..

Marc I'm not a doctor but I do suffer from fibro. It seems that your mood is playing off your pain and vice-versa. I don't have any answers except to say that Boots Calcium, magnesium and vitamin D tablets do help me with the pain and valerian root helps me get some restful sleep. Best Wishes.

Marc..I totally agree with Bluesman.....vutamin d3 and magnesium...double the recommended dose..really great..:-) do hope your feeling a bit better.....really feeling fir you...don't let your pain rule who you are..:-) xxx

Yes indeed - double, sometimes treble the RDA for me. It does take time to build up in your system Marc.

Unfortunately Marc the doctor is right, I've had Accupuncter and it only worked for twenty four hours after treatment. I worked for the pain clinic, he is correct that there is little they can offer you, it's hard to accept but true. You would be better seeing a Rheumatoligist who can give more constructive treatment. I'm afraid reporting this doctor will only end in disappointment for you and could lead to future problems with your treatment in that health professionals could be wary of treating you in case you report them. Please think very carefully before reporting him. 

Take care

Shelagh

Well 24 hours is better than nothing isn't it?

Also you may have worked for the pain clinic but you know nothing of my personal situation and severity of fibro on me. Different meds work differently on different people so you cant possibly say that their is little they can do for me. How do you know things wont work for me if they haven't been tried yet.

Also I asked my Dr about rheumatologist and he says there are none in my area.

Sorry Marc, I can speak for the Pain Clinic, they can't treat you for Fibromyalgia pain, it sounds like they suggested amitryptiline which is the usual treatment. You are taking Pregabalin, that's good but normal opiates will not ease your pain. If there truly isn't a Rheumatoligist in your area get referred to one outside your area, it's about patient choice. Dr bannister is going to refer you to another pain specialist, go along and see if they have something new but don't get your hopes too high. I've noticed you appear to want everyone to agree with you but that won't happen, people are trying to be helpful, let them. If you just want people to agree say so in your post then we can either do so or not reply.

i agree about reporting them ,i did this due to my son being ignored for months while his weight plummeted all it did was make other professionals weary of treating him and they were very agrasive with there manner.

How do you know that opioides wont work for ME? are you in my body and feel what I feel? No so don't you dare try to tell me what is best for me it I my body and I know what helps. The codeine helps a little but not enough and not as much a tramadol would help. I've been having this pain for a year and on occasions when my friend has given me some tramadol has been a live saver so don't talk complete rubbish. What even was your Jo in the pain clinic? Receptionist? And have you got fibro yourself? Doesn't sound like it. Also no you are wrong they did not offer me amatryptiline so don't make assumptions

Hi Marc, we are all in pain hun, but that is no excuse for being rude to people who are trying to help. Most people on this forum have suffered for a lot longer than you have and have a wealth of experience of what may help. Unfortunately due to the nature of the condition it is difficult to diagnose and treat. I hope that you find something that works for you.

 

I used to have Aacapunture quite regular...and that's sooo correct..it only last for a short while...not long enough ..:-) xxx

Marc...you really do need to at least have some empathy for people on here, everyone is suffering..that's why we are on here..to support and learn from each others experience...being in constant pain is one thing but not being able to be heard and believed and helped by the medical profession is totally other thing..something we have ALL been through, we all really feel for you..and know how you must feel..and really hope you find some good outcomes..we can only share with you from our own experiences..hoping that it will give you and others some encouragement..and tops maybe...be blessed Marc...we are for you not against you..try to be for us.,:-) xxxx

Ok Marc, you know best, three facts 1/ I've had Fibro for over twenty years plus other very painful problems, 2/ no I wasn't receptionist and 3/ painkillers only help certain types of pain. The letter from the consultant mentions Amytriptoline, that's all I said. Personally I take Amytriptoline, pregabalin, Dyhidrocodeine and Paracetamol plus I wear Morphine patches, the Dyhidrocodeine and Morphine are for pain not related to Fibromyalgia, the Amytriptoline and Pregabalin are for that. At present there is no cure, you can argue with that all you like but it won't change anything. You need to see a Rheumatoligist, they are everywhere, if there isn't one close to you get referred to one elsewhere. Dr Bannister says you are in Perth, there are Rheumatoligsts in Perth. Go along for your second opinion you may get lucky but I doubt it, hopefully I'm wrong in which case we can all get some relief. You have to do what we all do and learn to cope, find out what works for you whether it's exercise, yoga or counselling. Despite everything I wish you well Marc.