what happens next, will it develop and change?

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what happens next, will it develop and change?

Postby baldrick » Tue Dec 23, 2014 1:45 am

I have been diagnosed, with basically all the symptoms, for a couple of years, but probably had it for a decade. Fibro fog, no sleep, and proper pains for no reason, randomly everywhere. I was good all summer, basically no meds except the odd tramadol, feeling ok. Done all the usual meds in the past.

But now the sleep problems are getting worse by the day, the pains are raising hugely again and it feels like it will be worse than the last episode, which lasted 6 months and was really bad.

I am worried about the future of this, i work all the time, do my best never to go sick, but it is getting steadily worse, year on year. My work knows i have it, and after a period of light duty work i am back on operational duties in the fire service. When i get really bad as i did a month or so ago i could not have worked, and had a few days off with a bad back, but i really believe it was fibro and not a "mechanical " back injury.

Reading your posts help, but many of you are either way worse than me, so perhaps further down the line of this, or, dare i say it have given up more, and i can see this happening easily, i retire in under 3 years, and one of my coping strategies, staying operationally fit would no longer be required. So my question is this (i know there is no definitive answer) but from your experiences, will it stay the same, with episodes as and when,will it get worse or what. In my experiences it is getting more intense, worse each time. I am a big heavily built bloke, an ex diver and fire fighter/watch manager. I feel 80 and am not yet 50
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Re: what happens next, will it develop and change?

Postby tintagel » Tue Dec 23, 2014 8:24 am

Hello,
Sadly I don't have any answers for you, but just wanted to empathise, as I find myself in the same situation. I too am having my longest and worst flare ever. Nearly 6 mths now and almost totally debilitated. Like yourself, I have to work and I'm scared.
All I can say is, the good people who use this forum have supported me recently. Im just 50 and have to believe that there will be a cure at some point. Hard on the current bleakness of it all though.
Gentle hugs.
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Re: what happens next, will it develop and change?

Postby Ali170 » Tue Dec 23, 2014 9:00 am

Hi Baldrick,

I have suffered with this for over 25 years , had ups and downs, I always managed to work with the help of meds. I retired 2 years ago and I must say that it hasn't got any worse and the stress of having to work has been removed. Yes I still get pain, yes I still get tired but at least I can manage it better and pace myself in my own time. I have never found that exercise makes it any better or worse so I just do what I can cope with. A coupe of long walks with the dog and gentle stretching is all I can manage.

Some days it really gets me down and others I cope ok. I know your journey might be different but on the whole I'd say it will be a big relief when you retire and you can find someway of living your life the best way you can.

Hopefully your GP understands this condition and will help you which ever way it goes. I got a lot of help from my occupational therapist, with home aids to make life a bit easier.

Good luck, take care xx
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Re: what happens next, will it develop and change?

Postby katherine244 » Tue Dec 23, 2014 9:37 am

I want to say huge well done for staying in the fire service throuh this - I find sitting in an office hard enough. But then maybe that does help you to 'keep going' to some extent. If you're worried that retirement will make it worse because you might start to 'give up' then make sure you keep active afterwards. Exercise is supposed to help but for some getting started with this is the really hard part so if you continue being really active then things shouldn't get worse so quickly. Saying that, it is different for everyone so it's really hard to say.... I doubt anyone can give you really useful answers but I hope this makes some sense.
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Re: what happens next, will it develop and change?

Postby Fluff » Tue Dec 23, 2014 10:45 am

Having been recently diagnosed I have no idea what this is. I do not have any medication as the rheumatologist only said I'll take you off the ra medication and that was it. I have to see my works doctor who wrote to my line manager with the RA consultants diagnosis and told my line manager that FM only lasts about 2 years and then gets better is that correct ??? How long have you guys had FM for
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Re: what happens next, will it develop and change?

Postby didavo » Tue Dec 23, 2014 11:53 am

Hi Fluff
I'm only recently diagnosed as well and finding it hard coping with the fatigue and pain.
I'm waiting to see a rheumatologist but from what my doctor and Physiotherapist say it's a forever thing.
I had to give my job up because of this,I was an outreach worker and spent most of my day walking and
am currently looking for a more FM friendly job, If there is such a thing. I admire people who suffer with this
condition and keep working it's not easy.
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Re: what happens next, will it develop and change?

Postby FluppyPuffy » Tue Dec 23, 2014 12:19 pm

Fluff wrote:I have to see my works doctor who wrote to my line manager with the RA consultants diagnosis and told my line manager that FM only lasts about 2 years and then gets better is that correct ??? How long have you guys had FM for

It will be 15 years in February 2015 for me being part of the FibroFamily. Based on what your works doc has said, I should have got better 7 and a half times by now :roll: :roll: :roll: I'm not sure why some "healthcare professionals" say things like this where FM is concerned :facepalm: :facepalm: :facepalm: There are some conditions, such as polymyalgia, which do eventually burn themselves out, but this doesn't tend to happen with FM. There are some who have had their FM go into a remission/dormant~like state, or have found the right combo of meds nad treatments for them to lead a near~normal life. But it doesn't mean that it has definitely gone, it seems to linger around in the shadows, waiting for a chance to start taking hold again.
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Re: what happens next, will it develop and change?

Postby Fluff » Tue Dec 23, 2014 12:52 pm

Thank you for your replied. I currently work full time as a police officer and am finding things really difficult. I was hoping that this was a short term thing but judging by others posts I don't think it will be. Have you also experienced the line that my rhumatologist says " it's all in your head". You are experiencing pain that isn't really there. !!!! I'm not sure whether I actually have an illness or I'm going mad !!!
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Re: what happens next, will it develop and change?

Postby FluppyPuffy » Tue Dec 23, 2014 12:57 pm

Unfortunately Baldrick, it is difficult to say what might happen next with something like FM. With there being so many variables, and the condition being so unpredictable, answering the question "How long is a piece of string??" is a far easier thing to do.

Things will change, it is an inevitable part of life, but as to which direction they will go in, the only way we will know for definite is when it happens. Until then, whilst we can try and prepare for a number of different possibilities, dwelling on what might be will only rob you of essential resources that are probably in very limited supply on a good day, so if you can try and turn your focus onto what is happening in "the now" you may find it helps ease some of that draining pressure you're currently juggling with, which in turn can ripple out and have an easing effect in other areas too.

You're doing amazingly well in carrying on working, esp in such an important role in the emergency services so try and hang on to that for as long as you can. If you find yourself in a position where you need to return to some lighter duties for a while, approaching it as another coping strategy could help make it pass a little easier.

Rather than thinking that others may have a worse case of FM, regarding it as we each have our own version of the condition can be another useful approach. Whilst there will probably be areas/aspects of the condition that affect others much more than they do you, there will also be factors that affect you in a far greater way than they might do others.

No~one knows for definite what life has in store for them, the best we can do is take what comes and try to get the best from it. Things will change, some good, some bad and some just downright ugly, but handled in the right way, the bad and the ugly can sometimes turnout to be quite good.
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Re: what happens next, will it develop and change?

Postby Fluff » Tue Dec 23, 2014 12:59 pm

Thank you for your encouraging words x
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Re: what happens next, will it develop and change?

Postby FluppyPuffy » Tue Dec 23, 2014 1:07 pm

I have experienced that very same comment Fluff, not from a GP or consultant tho, but from someone close who I thought would just accept things unconditionally, so I know how much it can hurt, annoy, confuse and leave you just wanting to :scream-1: :scream-1: :too-upset: :too-upset: :face-slap: :face-slap:
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Re: what happens next, will it develop and change?

Postby baldrick » Tue Dec 23, 2014 5:09 pm

Thanks for the replies, i guess i knew that there was no normal course for this, and it varies with all of us. A couple of things said have really hit home however. I have been keeping note of when i am illest, and note that this time of year is always bad. It is also a time when i get out least and do the least light exercise / walking. I wonder if slowing down allows the problems to rise. I also get bad after every minor injury, again whenever i stop exercise because of this. Perhaps it is co incidence. Could the lack of light also be an issue, Not a lot of sunshine in north Scotland at this time of year? I think perhaps i am looking for a magic cure by all this, and know that this is not going to happen.

I note also that my back gets sore first, almost every time, followed by shoulder and elbows, and then basically everywhere. The only bit that does not hurt is my hair (i have been bald for 15 years!)

This particular episode is not the worst i have had,the pains are controllable and though i am quite exhausted i have been a lot worse. I am really hopeful that this episode is stabilizing, as work is tolerable and i really dont want to get worse. Motivation is a problem, but at least i recognize this. My head is real fuzzy today however, and i really dont enjoy that.
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Re: what happens next, will it develop and change?

Postby debs67 » Tue Dec 23, 2014 5:27 pm

My consultant told me i have fibro for the rest of my life. I will get good days and bad days, but to prepare myself for more bad days than good. Im just taking one day at a time .
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Re: what happens next, will it develop and change?

Postby Theresa34 » Tue Dec 23, 2014 9:55 pm

Hi baldrick. I think I've had symptoms over the years but little by little. Full on symptoms began in January this year, diagnosed in Feb by my rheumatologist. I was seeing him because last year I was diagnosed with psoriatic arthritis! I'm currently a stay at home mum, 35 yrs old, three kids and not ready to give up on life. I am on Amitriptyline for the sleep and pain (used to have horrible insomnia), been on gabapentin since August and on vitamin D. I've recently out myself on a few more vitamins which I feel is helping me. Will see how it goes. I tend to stay positive on the whole but when the flares hit, its hard to keep positive! But that's life especially with fibro. Its very unpredictable. I fight it everyday. I try to keep mobile as much as possible, as sitting still too long is painful and makes me stiff like a statue! I try to have rests here and there. I used to have more bad days than good when I was diagnosed. Now I have more good than bad :-D I think a positive attitude helps a lot :-D doing regular light exercise is very good too when you can manage it. Its all about keeping mobile and flexible. Don't give into this condition x
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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