"High Functioning" Fibromyalgia

All your fibromyalgia experiences, questions and answers.

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"High Functioning" Fibromyalgia

Postby banana » Sun Mar 19, 2017 10:02 am

Hi, new to the forum world! I have only had my diagnosis for around 9 months and I am having a difficult time coming to terms with it. To get the diagnosis I saw every consultant under the sun, had nerve conduction studies, MRI's, CT scans and several blood tests; all of which took over a year. During this time I have been at university and somehow have managed to get to my third year with only 7 weeks left before I qualify as an Occupational Therapist! Around 7 years ago I was run over and have suffered from PTSD, anxiety and depression as a result and have been on citalopram ever since. Since my diagnosis, I take amitriptyline nightly and codeine as-and-when and have recently seen a specialist physiotherapist. He was so patronising and kept calling me "high functioning" and told me that I am already doing everything I can for my treatment. I appreciate that it probably does sound as though I am doing really well and for some people, Fibro means that they are unable to work or maintain relationships etc. but I am exhausted. I am in pain on a daily basis, continuously suffering from fibro-fog, having memory problems and my body keeps letting me down. I am finding it really difficult to accept that my body won't let me reach my mind's potential or that on my bad days, this is as good as it gets. I appreciate any advise that anyone has to give!
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Re: "High Functioning" Fibromyalgia

Postby perseus » Sun Mar 19, 2017 11:03 am

Hi banana

I'm so sorry to hear about your predicament. I recall finding it difficult to come to terms with my condition and was similarly active and working throughout the first 10 years of my condition. My Fibro did improve after an initial acute phase and remaining active without pushing it can be far more beneficial than lying in bed all day. On the other hand stress at work will be detrimental and there are few easy jobs especially at the start of a career. Well done on your progress so far and good luck with your future career. Just cling in there you are not alone.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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Re: "High Functioning" Fibromyalgia

Postby *Lisa* » Sun Mar 19, 2017 12:42 pm

Well done! :-D

Sorry to hear of your accident :(

Now I have alot of experiences with physios as this is my main treatment and been having physio now for over 15 years (private funding now) and the physio you saw should not have put you into a bracket (High functional) because each day/person differs, as you explain Quote * but I am exhausted. I am in pain on a daily basis, continuously suffering from fibro-fog, having memory problems and my body keeps letting me down* Fibro does not mean your unable to work or maintain relationships as fibro differes to each and every one of us. Even tho some people can maintain relationships and hold down jobs this does not mean that person is not struggling, you need help just as much as anyone else does. :hugs:

I think you need to look into exceptance as you say. Except your bad days, except your going to need support to achieve what you want in life. CBT therapy for chronic pain is good to help for techniques in this. It also helps with things like pacing and working out your limitations. This I feel will be very beneficial for you in your situation and you can ask for CBT from your GP they can forward you onto a therapist if you feel it may help you.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: "High Functioning" Fibromyalgia

Postby SchroedingersCat » Tue Mar 21, 2017 10:48 am

I'm ultra high functioning.
I have no treatment - no meds, no physio, nothing. Never have. On really bad days I take OTC painkillers.
I work 2 days a week, run a large house, do the gardening, walk the dog for around 5km a day, and have a very physically demanding hobby that involves running around in fields a lot. I also cater weekend events periodically, which means 16 hour days on my feet in a kitchen from Friday till Sunday.
I no longer suffer from fatigue since I completely cut refined sugar from my diet last May, but I too am in pain all day every day. We were at an event last weekend, and on the Saturday night as we left to head back to our hotel at 1.30 a.m., I had to be helped in and out of the car (I was driving) and to the hotel room, where I had to lie on the floor to take off my clothes.
My body lets me down too. I've had 6 years of this with gradually increasing pain levels the whole way.
I've no advice, in all honesty. I just get on with it, as it's better than the alternative.
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Re: "High Functioning" Fibromyalgia

Postby banana » Thu Mar 23, 2017 6:46 pm

Thank you to everyone who has replied and shared their own experiences with me. Its good to know that I am not on my own! I definitely need to go back to CBT (I did have some CBT for PTSD following my accident), just never quite sure the right time to do it- with finishing uni and starting a new career I am worried that CBT may make things harder for me in the short-term. I am definitely not so good at pacing myself and this is something that I will have to get used to. It is difficult to see the sunshine in life when a flare up makes everything so difficult. Keep on, keeping on I suppose :-D Thanks again
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Re: "High Functioning" Fibromyalgia

Postby AngieRo » Mon Apr 17, 2017 11:13 pm

Hi banana, I know exactly how you feel! Been diagnosed in September 2015 and I am still learning to deal with it.....i have a full time job, very demanding and I haven't phoned in sick with fibro yet.... i am doing all the right things and then I feel well and forget am ill, I do too much and then I feel really bad again, and the flare ups seem to be worse every time. CBT helped me immensely last year, I can only recommend it....even if you think you don’t have time, even if it’s just a 30 minutes telephone session.....don’t put it off, it will definitely help you with your busy life and schedule...I know it helped me when I was mega busy and I actually managed to find time for myself which I thought it was impossible at the time.
I really hope you will feel that you can manage fibro soon... all the best xx
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Re: "High Functioning" Fibromyalgia

Postby banana » Thu Apr 20, 2017 12:53 pm

Hi AngieRio, well done for not calling in sick!!! You deserve a medal! It's true, on good days I could be a 'normal' person. I have decided that I would like to do CBT as soon as I can, but when I went to the GP I discovered my area currently has only half a psychologist funded by the NHS..... kinda put me off as I don't fancy the waiting list (which my partner is currently on and has been for 6 months already)!! Thank you for your encouragement :-D
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Re: "High Functioning" Fibromyalgia

Postby Bobby16 » Mon Apr 24, 2017 10:14 pm

I think there are degrees of severity to this condition. Some people can function. Some people can't.I'm sensitive to medications and can't tollorate most of them. I wonder what sort of future is in front of me. It looks pretty bleak.
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Re: "High Functioning" Fibromyalgia

Postby Bobby16 » Mon Apr 24, 2017 10:22 pm

I like reading the posts because I am happy for those who are able to find some positives with this condition. It gives me hope that one day I might wake up and have some respite from this condition.
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Re: "High Functioning" Fibromyalgia

Postby banana » Mon Apr 24, 2017 11:05 pm

Hi bobby, I am sorry that you are struggling and that you think your future looks bleak. I agree that everyone's experiences with fibromyalgia will be different and I also think that everyone copes in different ways and that everyone's outlook will be different too. I don't think it is helpful to judge yourself or others against each other- we are all in pain. For instance, although my physio classes me as 'high functioning', I have a daily struggle with pain levels, fatigue, depression, medication, diet etc. I worry about finishing uni and being accepted into a job I won't always be capable of doing- this is my third attempt at getting to graduate! I worry about my fibromyalgia and how that affects my future relationships and if I should have children or not- or even if I could even cope with being pregnant!! I worry about everything! But I find taking day by day helps to focus on what is best for me in the here and now and what I can do myself to improve my situation. I am still coming to terms with my own diagnosis so I know how difficult looking forward can be. I really hope things improve for you :teddy-bear:
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Re: "High Functioning" Fibromyalgia

Postby Bobby16 » Mon Apr 24, 2017 11:37 pm

I've got 3 children . Their grown up now, adults themselves. They were the best thing that ever happened in my life.you must have children.Don't let any conditions ever stop you from bringing a life into the world.even though I'm struggling now. My children have had a good life.They are settled in life and are happy. Diseases and conditions have been with us since we evolved into a species. We all will have genetic mutation at some point. It's how we evolved. The things we are experiencing now doesn't mean neccsera!y you will pass any trates on. Good luck with everything .
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Re: "High Functioning" Fibromyalgia

Postby banana » Sun Apr 30, 2017 10:50 am

Bobby16 wrote:I've got 3 children . Their grown up now, adults themselves. They were the best thing that ever happened in my life.you must have children.Don't let any conditions ever stop you from bringing a life into the world.even though I'm struggling now. My children have had a good life.They are settled in life and are happy. Diseases and conditions have been with us since we evolved into a species. We all will have genetic mutation at some point. It's how we evolved. The things we are experiencing now doesn't mean neccsera!y you will pass any trates on. Good luck with everything .


Thank you for your words of encouragement Bobby. I once would have loved to have children- I don't doubt I would be a good mother and always put my children first. If I did have children I probably would adopt. I take every day at a time at the minute and feel life has not been easy so far and at 27 years old, I have not lived for myself yet. Did you have fibro before you had children?
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Re: "High Functioning" Fibromyalgia

Postby Bobby16 » Mon May 01, 2017 8:16 pm

No . I've only been diagnosed recently.I don't know what I might have thought before I could see the future ahead of me.The thing is we never know and not to have tried, that's the question. You are a young woman. If I had seen the future I probably, would have gone down the same route. Good luck with everything .
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