Coping with fibrofog

nova · 13-07-2011, 20:12

Are there any nurses out there who have fibromyalgia? How do you cope on a daily basis with fibrofog?

estweyn · 14-07-2011, 19:52

Not a nurse, but do have a reasonably responsible job. Its a case of writing things down for me, I make lists and add to them when the thought drifts through. I have also found I need to follow things through if I can. I am lucky in the respect that I can do 'mindless tasks' on days when it hits, like computer inputting as long as I take breaks regularly away from the screen, then I do the filing. On good days all the important stuff gets done. I have also learnt to let others take their share of the workload, which doesnt come easy for me as I tend to try and fit my own and everyone elses work in. It really is a case of finding what works for you. I imagine it would be difficult in nursing with drugs etc if you were having a really bad day. Heres to good days.

nova · 15-07-2011, 16:38

Hi there,
thanks for your reply, it's reassuring to know that there are other people out there who can manage to hold down a job - albeit sometimes with difficulty. I too write lists which, for most of the time works well, but I find other people don't always make allowances for me needing 'thinking time' when I'm having a bad day, and look upon my list taking a bit as being weak and slow and unintelligent.
Yes, here's to good days, even when they are few and far between.

lynnybabe · 26-07-2011, 19:34

Hi there, i'm 44 and fibromyalgia is relatively new to me as I have finally been 'diagnosed' with it after suffering for the last 2 years. Learning to live with it has been a difficult journey especially as i'm sure some people think it's a put on. Yes I suffer with fibrofog quite a lot and laugh about it as being a senior or blonde moment, but it is quite upsetting and worrying. I am not working at the moment as I have good days, bad and very bad days and go through weeks of being up and down. Just wondered anyway if either of you know of a group or somewhere I can chat with similar people in Sheffield? Thanks, Lynne

nova · 27-07-2011, 20:11

Hi Lynne,
thanks for replying to my message. It's very difficult and frustrating having a condition such as Fibromyalgia, as you will have discovered. Most people don't understand much about it or never even have heard of it, so have little empathy or understanding. On good days I can think quite clearly and stay on top of things, but on a bad day I am like a zombie. I can cope with the pain to a certain extent, it's the brain fog that gets to me the most. I'm sure people at work think I am 'stupid'.
I sometimes go to a Fibromyalgia group which meets on the third Monday of each month in the Victoria hall on chapel walk. You might like to give it a try, it's an informal friendly group of people with the same condition who understand what it's like.

All the best

daisy2 · 28-07-2011, 20:25

Hi Nova, I work part time in the health service and have a job where I sometimes have to talk a lot. The worse moments for me are when I can't think straight and can't formulate a reply, I can't find the words or they come out jumbled. Like Lynne I try to pass it off with a trite comment (got the wrong teeth in etc) and to be honest, whilst at one time I worried about other people's reactions and what they must think of me, now I just get on with it. It's great on the days when you feel you're firing on all cylinders but they can be few and far between and you have to cope the best you can. I feel as long as I am not compromising patient safety I am not a liability.

nova · 29-07-2011, 16:40

Hi Daisy2,
Yes I think your'e right, you don't have to worry too much what other people think. As long as I know that I am consciencious and thorough, it just might take me a bit longer to do things than others, that's all that matters. Humour helps to defuse the situation.

thinkpink · 29-07-2011, 21:31

I too have FMS have suffered with it for 20 years and was diagnosed 14 years ago, its been a long journey of self research which came mainly from the USA when I was first told what it was. I have seen nearly every consultant under the sun, to be told no cure, so its lifestyle management and pain management sadly that includes alot of medication there is a Sheffield self help group in Sheffield but its a morning one, so difficult for FMS sufferers to get there as that's when we are really bad! However there is one at Royal hospital at 7pm. Gabapentin and Pregabalin seem to be the drug being used for fms patients as it helps with pain, it was originally given to epileptics , but has helped with pain blocking.

thinkpink · 29-07-2011, 21:31

Sorry should have said Royal hospital Callow Chesterfield

DebiLloyd · 21-10-2011, 14:39

Hello
I last worked in 2008. I was made redundant right before Christmas, after my boss carried me for about 6 months.
FibroFog along with all the pain meds do take their toll on the old memory and basic function. Sometimes I get so irritable trying to get things across to people, that I just don't try to communicate.
I applied for DLA for FMS/ME and arthritis, but because I couldn't articulate how I felt or how I was affected, the tribunal told me I could walk, and I was declined.
Going to the shops has become a nightmare. I have panic attacks when I get off the bus, trying to take in my surroundings so I won't get lost, but still I do. I write down important appointments, but forget where I've put the list, so use my phone to remind me, well, the ones I've remembered to put into my phone!
May try to make it the group sessions, but it's doubtful. Weather plays havoc with the pain which just means yet more medication.
Sorry to sound so down. I used to be really energetic and able bodied. The last 15 years have been difficult, but the last 2 have been the hardest yet.
I feel like a prisoner in my body!

nova · 21-10-2011, 15:58

Hi there,
thanks for your recent message. Sorry to hear that you are having a hard time at the moment. I have found personally that no matter how much you try and explain about the problems with Fibromyalgia, a lot of people just aren't willing to even try and understand. It's so frustrating. What job did you do? It' a pity you can't make it to the meetings as they can be quite informative, especially when there is a speaker. I don't know if you would be interested but next Saturday there is an annual conference at the circle on Rockingham lane related to CFS.ME. where a man called Ashok Gupta will be giving a talk. As you probably know Fibromyalgia has a lot in common with CFS. so it should be interesting.

DebiLloyd · 21-10-2011, 16:08

Thank you Nova xo
I will try to make it to the conference!
I did secretarial and PA work, but my fog and memory became so bad that things were getting lost or shuffled over to other people. Pain meant I missed alot of work as well.
Just feel so fed up with it all! My house is a total mess! A few years ago, I would have struggled, but it would have gotten done. Now, an hour at most, and back to bed.
Will speak to a friend and see if they can attend the conference with me. I'll look it up now. Thank you again xo

lemoncake · 02-01-2012, 21:41

It's is a great comfort to know i am not going mad. I suffer with fybromyalgia, Hypermobility and syatica. I also have huge up and down dips which i have been told is because of the fybro. I have been suffering since i was about 13 (now 29) i was diagnosed 4 years ago.
My 1st problem is because of the hypermobility my joints go past the stopping point i.e my knees bend backwards. The causes even more problems for my fybro and no one seams to want to help i'm just told it's not going to be cured, my answer is i don't want a cure i just need to manage. I have a 1 1/2 and a 3 1/2 year old, my other half had been laid off just over a year ago and although it has been hard to manage money wise i would never have been able to cope with the children. I spend most of the time in pain i can't, walk very far, clean, some times can't wash and get out of the bath, it's humiliating. I go up and down stairs on my bum which is painful on the back but not as bad a my knee going and me falling. I feel like i'm 80, my nan was fitter than me at 84. The most heart breaking point of these things i have is when i cant play with my children, pick them up even sit on the floor and do a puzzle. My pain manager has told me to give in to my bad days and do things indoors, maybe watch a dvd, this is not a life i want for them spend 3/4 days or even a week (if my nerves wanna have a party) stuck in my bedroom watching films. Any ideas anyone has would be great!
My 2nd problem is i was told the good news is this will NOT get worse........Ermm well it has i was not this bad at 20 even 2 years ago. I just wondered if anyone else has been told this or has felt it does get worse.
Happy New Year Sarah

swandancer · 03-01-2012, 11:23

Hi, I've just been diagnosed with Fibromyalgia and honestly I don't think the implications have sunk in yet.
I'd been feeling 'ill' for a while, and forgetful, but put it down to the menopause.
An unexpected move with my partners job brought me to Sheffield, and everything else that came with it, looking for a new home, had to give up my job etc. I felt ill here, but put that down to doing too much during the move, but it just got worse so I went to the docs.
At the moment the doctor has only given me Amytriptaline (sorry if spelled wrong), and I have a cocktail of painkillers that don't seem to do much at all.
The fibro fog, as I now know it, caused me to lose both my bank cards one friday in December, then exactly a week later, my whole purse, cash, cards, driving licence etc. I put things away at home, and can never find them! What's the most distressing about the 'fog' is that I genuinely don't know what I've done with things, and forget things that have been said to me.
The pain seems to cover my whole body from my jaws down to my ankles, I never knew you could feel pain in so many places at once! My sleep pattern is shot, I slept right through from Christmas Eve, till early evening on Christmas day. I used to be such a busy person, now even making a list doesnt help me get things done.
I am currently unemployed and fear for my job prospects as I know I will not be able to carry on doing what I have done for most of my working life, as I have worked in sales, and have found that stressful for a long time.
I'm hoping to be able to get a job, even if it's only part time, but work is not plentiful at the moment, and I'm worried if I were to get a job, would I be able to hold it down? I'm not really qualfied for anything except sale, as I've done that all my life. I saw a job advertised for a 'postroom operative' that insisted on experience!
I have tried telesales, and that's very stressful & target driven,so not for me now.
I'm having my first interview tomorrow with my personal Job Centre advisor, that should be fun!!!
I've registered on a UK Fibromyalgia site forum, and was a bit distressed to find that there was practically no advice or forum strings on work, but absolutely loads about claiming benefit. I'm sure all these people are not swinging the lead, so is my working life over? By the way, I'm a 56 year old lady.
Be happy to hear from anyone.

pinkgirl · 03-01-2012, 18:42

I too have fibromyalgia, I was diagnosed around 4 years ago after having
problems since I was 14 and am now 44. As others have said fibro fog is
a real problem, especially if you are taking to someone who doesn't know about FM and you lose your words in the middle of a sentance!- We have
children and often find myself having to discribe something i have forgotten
the word of like 'give us a clue'. Anyone who wants a chat or to add me on
facebook is welcome to message me.

hennypenny · 03-01-2012, 18:49

Hi Swandancer

I have had Fibro and CFS (ME) for about 7 years now, and the fibrofog is definitely one of the worst bits.

I don't know if your working life is over, I hope not, but I kept trying to work, and each time I had to give up work as I couldn't manage it. I now just about manage to keep a very small business selling antique glass through an antiques centre, where the staff sell it for me, and all I have to do is obtain stock and refill the shelves every couple of weeks. Even this much I struggle with now

If you haven't done already, then it is well worth joining the Sheffield ME group, they are very good and keep up to date with all the latest research.

http://www.sheffieldmegroup.co.uk/index.htm

swandancer · 03-01-2012, 19:14

Thankyou I'll check them out.

roth ghost · 11-01-2012, 20:50

Hello Lady's, sorry if there are men who have posted, but I always seem to be in the minority group of men who have fibromyalgia

... Mine started over 3 years ago with pains all over my body and I wondered what was happening to me. It took over 2 years of visiting just about every consultant in Rotherham and Sheffield, before I was finally diagnosed with FM and Chronic fatigue, throughout this time I have continued to work, fortunately I have an office job and and not a manual one or I would have had no option but to have left because of the pain.

However, I do suffer with fibrofog too and It drives me mad, some days I'm fine and can remember just about everything, but other days I think I struggle to remember my name, I can be in full conversation with someone and then I just stop and go silent because I have either forgot what I was going to say, or even worse forgot what the conversation was about. It is embarrassing at times, but I find that by writing things down when someone asks me for something I can manage it. Problem is when I've forgot I've written it and where I've put the list which does happen a lot!

nova · 11-01-2012, 21:31

Yes fibromyalgia can also affect men, there are a few in the support group I sometimes go to. I empathise with how you are feeling, although the constant pain is bad enough, the fibrofog to me is harder to cope with. Sometimes people who don't know a lot about this condition look at me as if I am an alien or something when my mind goes blank or if I can't think quickly enough. I am trying essential fatty acids (omega 3's) lots of fish, etc. to see if it helps.

oumyasser · 13-05-2012, 19:56

Hi everybody I have had a fibromayalgia problem for 7 years now its realy annoying i feel my life is not a life im not enjoying it at all i've got 4 kids 15-12-7 and 6 years old so imagine the tennage age with the curiosity of the two little ones and as a single mum i have to cope with all the changes in my and kids life. any way i'm really interested in meeting with other men or women with the same probleme or be a member in a group or something like that Any help.