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The UKFibromyalgia Forums • View topic - Pain Clinic a waste of time!!!



Pain Clinic a waste of time!!!

Anything to do with the NHS or Private Healthcare.

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Pain Clinic a waste of time!!!

Postby concernedmum » Wed Apr 09, 2014 12:45 pm

Hi all I have just been to the pain clinic with my son who has Fibro and have never felt so let down In all my life. My son is almost 24 and was diagnosed in Feb 2013 after having numerous tests since August 2012. The Rheumatologist asked the gp to start him off on 10mg Amitriptyline and 50mg Tramadol 3 x daily. Over time his meds have been changed and he is currently taking 600mg Gabapentin 3 x daily, 100mg Tramadol 3 x daily and 75mg Amitriptyline once daily. He also takes 20mg Temazepam every 2nd night if he needs it. None of the painkillers are helping to ease his pain so he asked the doctor to refer him to The Pain Management Clinic hoping that they would prescribe something that actually would help him. His appointment was today with the MDT at the pain clinic. After speaking to the psychologist & clinical nurse we then went to another room and spoke to the consultant & the physiotherapist then they had a chat before calling us back in to tell us what they thought was best.

This is where I got angry :evil:

They told him to reduce the Tramadol by 50mg every 2nd day until he is no longer taking them, then reduce the Gabapentin by 300mg every 4th day until is no longer taking them either. He was also told that his Amitriptyline should be reduced to 50mg and that he doesn't need the Temazepam. I was waiting to hear what they planned to replace his painkillers with and almost fell off my chair when they said they want him to replace them with 2 PARACETAMOL 4 x daily and also be referred to MENTAL HEALTH!!!!!!
I told them I was not happy about this and that they were basically saying it was all in his head, which of course they denied.
He is totally devastated and scared, what can I do? Am I entitled to ask for a 2nd opinion on this as he is in extreme pain.
Sorry if I have gone on but I really don't know what to do, any help would be greatly appreciated. x
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Re: Pain Clinic a waste of time!!!

Postby FluppyPuffy » Wed Apr 09, 2014 1:23 pm

Sorry to hear what happened at the Pain Clinic :( :( :( It really is :yikes: :yikes: :yikes: just how much they vary across the different health authorities :facepalm: :facepalm: :facepalm:

Your son should be entitled to a second opinion. To find out what to do, seeing his GP is necessary. It will also give you both a chance to talk thru the "suggestions" from the Pain Clinic and see what his GP thinks of them.

I can appreciate what the Mental Health referral will have probably stirred up in you, esp with how you have described the appt. However, don't discount it completely. Living with FM can and does have significant effects on the psychological/mental and emotional sides of a person, which can lead to negative, unhelpful ways in how someone thinks and approaches their life that they are often unable to avoid doing. Working with a suitable therapist, ways can be found to challenge these issues and turn them around to a more positive direction. Having been in this position myself, I know that without the various sessions I have had over time that I wouldn't be where I am these days.


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Re: Pain Clinic a waste of time!!!

Postby zappa20 » Wed Apr 09, 2014 6:17 pm

Can appreciate your initial reaction, as it's fairly typical, however it certainly doesn't mean they're implying your son is imagining the pain or it's all in his head.

Your son has been taking a huge cocktail of traditional medication with little to no effect. Sometimes this happens with heightened perceived nerve pain. Remember the sharp burning electric nerve pain of Fibro isn't caused by any physical injury, what to someone without Fibro is a gentle light touch can be felt as extreme pain by someone with Fibro. Mainly due to faulty heightened pain perception.

In such cases where typical meds offer no relief there's no point in continuing with them particularly as many have hefty side effects long term and your son is very young. It's normal for them to try things like Cognitive Behaviour therapy approach and various others to see if it can help where medications have failed. Pain specialists are the experts and will tailor an approach which they think will give their patient the best result.

We tend to think painkiller medications are the only solution , however CBT can often produce excellent results. Try to keep an open mind and give it a go. Of course you can always ask for a 2nd opinion.
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Re: Pain Clinic a waste of time!!!

Postby whoami » Wed Apr 09, 2014 6:21 pm

I was all set to respond with words carefully chosen. I read Fluppy's post and it was basically what I would have written. I went and saw a psychologist for a few years when I was first diagnosed 25 years ago. It was the best thing that happened. I learned so much about myself and how I could cope.

This fibro is going nowhere. The more help we can get to understand and treat it the better. I don't think that anyone was suggesting this is all in your sons head. They were suggesting that this could be part of the treatment. My psychologist changed all my meds, put me on meds that treated each symptom.

I would suggest a follow up with the mental health clinic. What is there to lose? x
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Re: Pain Clinic a waste of time!!!

Postby concernedmum » Wed Apr 09, 2014 6:28 pm

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Re: Pain Clinic a waste of time!!!

Postby whoami » Wed Apr 09, 2014 6:36 pm

concernedmum.....I am sorry to hear that your son was attacked. Fibromyalgia can be triggered by trauma, any type of trauma. I hope your son and yourself consider the mental health clinic. They may be able to help in some way. It is stressful on everyone , this is an awful illness. Thinking of you both.x
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Re: Pain Clinic a waste of time!!!

Postby HeppiBean » Fri Apr 18, 2014 9:35 pm

I am going to the pain clinic next week. I hope they do not treat me like this! (Im only a little younger than your son at 21) x

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Re: Pain Clinic a waste of time!!!

Postby whoami » Fri Apr 18, 2014 10:39 pm

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Re: Pain Clinic a waste of time!!!

Postby HeppiBean » Fri Apr 18, 2014 10:40 pm

I will do, I am currently undergoing my 2nd round of cognitive behavioural therapy anyway so... Should be interesting x

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Re: Pain Clinic a waste of time!!!

Postby nicola75 » Sat Apr 19, 2014 9:11 am

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Re: Pain Clinic a waste of time!!!

Postby HeppiBean » Sat Apr 19, 2014 10:55 am

When I first had cbt it was for depression and worked wonders! I was suffering from bereavement after losing my mum and after 12 of cbt I was coping much better

This time around we're focussing on my anxiety and stress problems, have only had 1 session so far but after the success of last time I'm hoping it will help x

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Re: Pain Clinic a waste of time!!!

Postby denys » Sat Apr 19, 2014 11:40 am

Nicola CBT can work really well as another tool to help you cope, its always worth a try. I found it very helpful, didnt think it was doing anything for me while I was undergoing the sessions but have since realised I do use the tools quite a lot and it helps with my outlook to things.

It taught me not to focus on what I cant do, or my life before FM, or other peoples reactions to FM but to turn it round, focus on what I can do, on my life now (its just a different path) and my reactions to other people as these are the things I can control.

I now find I am happier inside my own skin, I still wish it hadn't happened but I cant change it so why let it completely ruin what I have now, I count my blessings everyday and don't worry if I have a day that isn't as productive as I would like.

I hope you get some positives out of CBT sessions, just go in with an open mind :-D :-D :-D :-D
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Re: Pain Clinic a waste of time!!!

Postby Iceskatemum » Sat Apr 19, 2014 12:52 pm

Just finished a course of CBT all I can say is the lady councellor was a miricle worker. I really didn't know how down I was , everything was crowding in on me , after leaving my job due to the FM I was angry, I had no self esteem and my OH and I were stretched to the point of breaking.
Little by little during the sessions we talked over things that had happened to me, some quite far back and how I coped with them , we then disccussed how I could have changed my coping mechanism to one that was more positive . It helped me open up to folk around me , communicalte more with my family and generally change the attitudes in the house as we were all feeding off one another.
I learnt to accept my Fm more, to stop hankering after what had been and concentrate on the here and now, to think about how it had affected me and how I could learn to review my life , learn to pace and look more positivly on things . There is still a lotta life to life just in a different way than I had previously planned

I can't say it has taken my pain etc away but it is an extra tool in the pain fighting tool box along with relaxation , heat bags and the many painkillers the GP seem to give me .

To Concerned Mum , the way the clinic talked to you and didn't explain things is very common . As others have said , it can take a while for us Fibromites to get a cocktail of meds that seem to be doing something for the pain , pls don't underestimate paracetamol it actually is one of the things that I use in my cocktail .
In the first instance Go back and talk to your GP get your son to explain his concerns and discuss looking at his meds to see how things can be improved and put in for a med review every couple of months until your son finds a combination of things that helps .
Fortunatly there may be times that the pain is managable but from my perspective it never goes away , you just have to learn to live with it in your life.

good luck to both of you
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Re: Pain Clinic a waste of time!!!

Postby whoami » Sat Apr 19, 2014 10:49 pm

If anyone with fibro asks me what is the best thing that will help me I always say....yourself. Having 25 years of this I did learn a long time ago that I am going to have to help myself a lot. The visits to the pain clinic taught me so much.

Our attitude can make a huge difference. The way we see our life being. We can sit back and really feel sorry for ourselves, focus on all the negative and think we'll we are doomed. If we do that, we will be.

We have to realize that our life is not over but beginning a new journey. This journey can take us to new places as in new hobbies, new ways of enjoying old hobbies.

We have to learn how to do things differently. Differently yes, but we can still enjoy.

With the help of meds, different treatments and our attitude we can life a wonderful life. Things will have to change but there is no reason we can't still have a very productive, enjoyable. And peaceful life.

That does not mean we won't have any challenges. We will. We will still have pain and a lot of the symptoms of fibro. We will have down days, depressed days. The thing is if we look for a bright side we will find one. Trust me, I have been to the lowest, darkest possible place that I could. Not wanting to survive. However, with the love of my hubby, his positive attitude , he helped bring me back. I now know that when it is a bad day, when I think why? I know that if I reach inside I can find that bright side.

I hope that each and everyone of you can find some "Peace to your Heart" x
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Re: Pain Clinic a waste of time!!!

Postby nicola75 » Thu May 08, 2014 8:31 pm

Katie and Denys thanks for your replys. Still waiting on appointment but hopefully won't be that long.
I am hoping it will help as I am struggling with coming to terms with how much my life has changed in the
last 18 months, I not only have fibro, but also have hashimoto's, an underactive thyroid and now I'm having some more
tests because my cortisol levels are low!

I've gone from being a very active outgoing person to not being able to walk to my corner shop without it leaving me exhausted!
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