Morning everyone, I managed a full night sleep but feel exhausted. Common as you all know.
Can we discuss all the current drive around positive mental health. It seems to be the thing with ALL health professionals at the moment. Now I'm a very positive upbeat person as a rule and not short on reframing things to manage difficult conditions i.e. Goblin jailers for the pain. Using humour as my weapon of choice in my daily battle.
I'm also a mental health nurse by trade and until July I was a director of a mental health hospital. I only meantion this to show I have experience with mental health positivity.
But unless you have first hand experience of a condition like fibromyalgia it is impossible to comprehend the impact it has on ones life. It is the most debilitating condition and to add insult to injury no one believes you when you say how bad the pain is. And pain is only one aspect of this condition. The cognitive dysfunction is just as debilitating as the physical aspect.
I know positive mental attitude is important and it's easy to say but as we all know it's much more difficult in practice. I find it not only insulting, but lacking in genuine empathy, to keep tell someone 'you must be positive, you must get exercise, do without pain relievers and use positive thinking.
Yes, to a degree it's all correct, I taught and use deep relaxation and visualisation for years for pain relief and with within mental health settings. However, I find it is not very successful with fibro. I can reframe and distract but that action alone is exhausting! And you burn out within a very brief time and end up with flares. I'm also a reflexologist and use it but...the act of given treatment, which I thoroughly enjoy and I find as relaxing to give as to receive, exhausts me. Would I give up my career for this life on esa and humiliation by the redicule if I didn't have to. No, nor would any of you I'm quite sure.
Part of my job role was 'controlled drugs accountable officer' was meant any over use or abuse of prescribing controlled drugs was put under the spotlight by me. I attend 1/4 yr northwest Manchester meetings with all other senior officials. Drs, county pharmacists, chief of police etc. All set up after the shipman case. So I know the discussions around controlled drugs. Pregabalin being one of the most talked about over abuse drugs. There has been a dramatic increase in its use for pain relief and it's causing huge concern. Side effects and cost implications and abuse being the raised concerns. Gp's are under increasing pressure to reduce the medical cost and abuse of these drugs. I don't use it nor would I as I don't want the side effects. I do use lidocaine patches for my spine and the consultants, known my job, as I was still working at the time, told me he was 'warned to stop prescribing them due to cost and NHS financial pressure.
I feel it's important to be positive but never be afraid to challenge the discrimination you are shown. There are many factors at play when professionals see you as a patient and again, I agree there should be rigorous checks to avoid over use and abuses of medications, but please ensure you have a good, honest relationship with your gp. But do not be afraid to insist on current up to date information and proper treatment options.
Perhaps today's positive J word should be non JUDGEMENTAL treatment and a bucketful of kindness.
I felt it was important to discuss the above as I have read so many posts re meds being stopped and quips re positive mental thinking. I do hope I haven't offended anyone with my writing. Remain blessed and as pain free as possible. The goblin jailers are lurking 😉
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Olivia1
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Good morning Olivia1 Thankyou for sharing my friend, I found it very interesting as I'm sure lots of other members will and in no way offensive.
I also worked in quite a high powered job for Social Services & have spent most of my working life working with people in care of all ages and from all walks of life and like you, loved my job very much and it destroyed me when I had to stop working, it takes so long to adjust and except things, then in this equation, like you say, you slowly get more and more demoralised by medical help or any kind of support that doesn't happen, I was told for years, "its all in your head, your depressed" etc. I'm talking about 30 yrs ago & the exact thing is still happening today.
I am still horrified by some stories I read on a daily basis on how people with Fibromyalgia are treated. I have said for a long time about how we have it drummed into our heads about discrimination in the work place, Governments rules and regulations but now we find ourselves being discriminated by the very same people that made those rules to safeguard people.
I was only reading about the Pregablin abuse yesterday, again, shocking, the fact that doctors are going to be very careful about how they prescribe it. They are like a little lifeline for me, I don't know what I would do without them.
I have a similar working background (now retired) and agree with you the negative effect of being told to think positive thoughts, I do practice mindfulness meditation if only to stop my mind racing, it does nothing for the pain. Lou x
I totally agree with you Olivia1 and it is summed up in that old saying "walk a day in my shoes" For someone who is fit, healthy (and young) it is just meaningless to say be positive and all will be well.
I don't know where these prescribing issues will end up. I have been recently denied the painkillers I have been prescribed for years, called co-proxamol, even though they have been unlicensed for some time previously. I was approved to have them as a named patient, and I had to sign a contract that my family would not sue if I took an overdose.
The alternatives given are paracetamol or morphine, both of which I could overdose and die from taking too many, didn't have to sign a contract there though!
My doctor was sympathetic but he was told that his insurance would not pay out if something happened to me if he carried on prescribing them. Oddly, he tried to push Pregabelin on me, and couldn't understand when I told him I didn't like the side effects. I am guessing doctors get some kind of commission for prescribing it.
I see myself as a glass half full person, so I do tend have a positive outlook, but there are times you just have to give in for a few days.
No offense taken. I'm sorry you feel so alone and misunderstood by your dr.
I am a pusher of positive thinking.
I have had fibro for, working on 15 years. I have been in extremely different situations pain wise. I do not take any pain meds. I have found GREAT relief with range of motion exercises, injury prevention exercises, juicing and diet change, magnesium chloride oil, stretching, foam rolling/massage therapy, chiropractic adjustments, and meditation/being present, grateful and positive.
I have started and stopped these things enough to know they work for me.
The positive thinking isn't going to make the pain go away. It is going to let you live with pain. It is to focus on life, the trees blowing in the wind, the warmth of the sun on my face, appreciating the day. And I always notice that when I elevate my mind, that I am not focusing on the pain which helps me live happier. The pain is still there, I am just not focusing on it, (sometimes it seems my focusing on the pain was amplifing the pain)
I can't say whether that is what the dr ment or if he thinks there is magic in meditation that I haven't found that makes the pain go away.
But I feel that is what we all mean on this site.
I understand the craziness that it sounds to be in an indescribable amount of pain and to be told to move around and be positive. But I promise I could not live without all the things I do. I know what helps me won't help everyone, but I do hope that people will try what they can and not just assume they are beyond the help of juice, moving and stretching.
*to my knowledge* There are no meds that actually improves fibro, only meds to take the edge off, which a lot of people build tolerances to meds and only have to take more. So I feel even if you take that route positive thinking will be needed as there is no pain free fibronaut.
Sorry if I rambled. good luck
And I'm sorry if i have commented saying to be positive seemed a little heartless in those moments of extreme pain, I know when you are in the bowels of the beast you just want someone to help and that may not seem helpful at the moment.
'Bowels of the beast' .... describes it perfectly to me nikki! Thise days where any positive thinking goes out the window and every fibre in your body is screaming with pain and I just want to curl up and disappear- and this is at work! If only someone that said she'll be right mate could feel what we felt for even 10 minutes I'm sure they'd quickly change their approach.
Thank you all for taking the time to respond. I worried I had gone too far. I wasn't pointing out my job but the rhetoric that goes with it for people who have no understanding of what fibromyalgia is like.
Anyway letting keep the goblin jailers at bay whatever way we each can an be as happy as we can. I had a great day so far. I sure hope you all find a happy moment today too. Biggest softest hugs 🤗
Hi olivia1
This has been my question for a while now. How can your thoughts stay so positive when you are in such pain. I have read several self help books on positive thinking and they are great untill you can't move for the pain your in just holding the book.
Everytime I see a gp or consultant they ask questions about my mood etc or get me to complete a PHQ9 form. I am not depressed! I have low moods yes, but that's only through frustration. I get sick of being told it's because you're stressed and depressed, it's all in your head.
Hi Leemaree44, I'm sure all of us here have experienced the same at one point. I know I have battled constantly over a decade fibro and with gp until my last one. He was a gem. I think that's why I wrote this morning with so many comments re PIP and the like and the judgemental attitudes. It drives me mad.
Just keep going my love one foot, albeit painful, at a time. It's not in your head and if it is well we have the same problem!
May I just add that no one need apologise on this forum for having a different take on things, that is what makes this the best site I've come across for information, we all gain from different ideas xx
Thank you so much for your insights and a very interesting post. It is gneuinely appreciated. I have noticed many additions to the NHS Choices website whereby they have included positive thinking on so many of the medical treatments for different conditions. I just hope that it does not become an over-the-top style witch hunt to reduce the drugs bill? I want to sincerely wish you all the best of luck, and please take care of yourself.
I know Ken, I didn't want to post re my background as it's not relevant but as I sat a numerous meetings and listened to the comments re people with chronic pain I felt silenced by shame and a sense of powerlessness. I never once said at work I had fibromyalgia...because of the stigma attached to it. And when I refused yet more responsibility due to health reasons. I was taken down capability route. Occy health was fully supportive of reduced hours but the board of directors where ruthless so I resigned. I had a lot of time of because of my asthma. As I was only 14mths with new organisation I had no protected rights for constructive dismissal despite documented evidence. I'm afraid the cost cutting is paramount in the current clime within NHS directives. PIP being cut of individuals who are detained under MHA and in hospital, reduction in 'abuses' of pain relief and sadly we are all tarred with the one brush. People who genuinely need help are treated with a ruthless lack of caring.
Take care, seems to me the only genuine support will be from each other. Remain blessed x
You're so right! Positive thinking is well and good, and i think overall I'm a pretty positive person with a glass is half full outlook on life, but without my pain relief I couldn't walk, I couldn't work, I certainly couldn't be a good mum and i most definitely couldn't do ANY form of exercise. Some Drs think it's in your head, fortunately i have a really great GP who knows I don't abuse my pain relief but simply use it to function as effectively as possible on a daily basis. I still have really bad days 😔
You are right and I'm thankful I to always ' glass half full' person. I miss my work but glad I'm out of the stress. You look after yourself and stay as well as possible. Soft hugs and remain blessed x
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I'm sorry you feel so alone and misunderstood by your dr. 
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