How have other managed to get there head around having fibro and the impact it has on personal life.

[tess10]

Hello all, I have already been answering some questions before introducing myself, i join this sight about an hour ago, been putting it off as I have a rough idea in my head how much worse my fibro can get in future, but have been a little scared to see it in black and white from other people, My gp specialises in rheumatium also, so I have been very lucky, i have been going to him for many years, I was formally diagnosed with fibro in 2009, as for two years prior my health was deteriating, however he feels there is a stronge possiblity that I have had fibro since childhood as I was diagnosed with rheumatisum back then. I am now struggling to get my head round it all especially as it has impacted massively on my life, how has everone else managed

many thanks Ingrid x

[ellendd]

you do you take each day has it comes, live for today that what i say,if you feel not to bad just do thing and then rest for 1/2 hour to two hours and try again later. do you work,?i did but i had to be put off could not do the early morning s and drivving all the way from essx to canavry wharf and then back again on the motorway.just try and relax and take one step at a time like a baby takes there first step you will get there trust me took me a long while to get where i am today, just take it slowering good luck speak to you another time

[tess10 in reply to ellendd]

Hi Ellendd, hope you don't mind me responding to everyone under your reply slip.

Hi Everyone, I was working till my contract ran out in April. Its along story but I qualified as a Mental Health Nurse 2011. I secured a job on a CFS ward, but within 6 weeks my fibro became an issue, more for them than me, it ended quite badly as the dismissed me, I appealed and eventually won being offered a community placement for the last 4 months of my orignal contract. It was great but towards the end I could barely function, they were very supportive, but we all agreed that full time is out of the question. Occupational Health have also explained they would not be able to sign me off to work on a ward or in a residential setting, which I do understand. the only area I could actually work as a nurse now is community and jobs are scarse. I do try and relaxe as much as possible I just find it so stressful, esp as I had my future all planned out for when I got to 40 and my children would be 20 so old enough for me to just get on with things, I wanted to travel, do some voluntary work abroad, etc etc, I'm sure its similar for others, I don't have a partner and I have the added pressure of supporting one of my boys who has Asperger Syndrome, so my energy really does get zampt at times, I do try and stay positive as I feel there are others worse off. it does feel good to share with people who just get it, don't have to give long explanations you all just get it. which I am grateful for.

Quick question I have been suffering with ligamentitus in my right hand for around 4 months now, had sterroid injection, have others had/have this and does it improve??

Once again thankyou to all for support

Hugs Ingrid xx

[Hidden]

Hello and welcome to our lovely forum Tess! Great to see you here! Rest assured we are all in the same boat here, we all understand and we are all here for you and for each other too. If you are concerned about anything at all, just ask, we're always happy to help.

You will find lots of info, advice, support and friendship here too!

In answer to your question - I had been working long 12hr shifts for many years and I started to notice that instead of finding them easy, (I had bags of energy even after work) I was struggling and on my days off I was spending more and more time in bed exhausted. Then the pain started and got so bad I had to go sick. I had never taken even a day off before, the days off became months and I never managed to go back. That was in 2008, I was diagnosed in 2009, but looking back I reckon I'd had symptoms for three years prior to that.

I can't pretend my first year after being diagnosed was easy, it was hell. I couldn't come to terms with what had happened to me at all. I could barely do anything at this point. I got up, went back to bed and then got up again just to make dinner for my family and then went back to bed. Also I was so emotional, weeping all the time.

Suddenly one day I started to look at things differently, I thought about all the things I could still do as opposed to the things I couldn't do. I started counting my blessings. My glass was half full as opposed to half empty! From that moment I accepted it and I could deal with it. I started trying to find ways to improve my sleep pattern so I could manage to get up in the mornings, this was a real victory. My family started to tell me that the old me was back, this spurred me on no end!

I went to a CFS Clinic and learned how to pace myself, which proved invaluable to improving my quality of life. I gave myself sufficient rest periods throughout the day and eventually I found I could manage more during the day.

At the end of the day we are all different, some people can accept things easier than others. It also helps having a supportive husband and family, I am very lucky. It's not easy when you're on your own, I appreciate that. That's when hopefully a supportive network helps, perhaps a support group, friends who understand etc.

I try not to think about how I used to be before Fibro. Now I think of all the things that I want to do in my life, they are just different things, less energetic to cater for the "revised" me! Every day I pace myself, I have good days, bad days, but take a day at a time, that's the secret I personally think.

[Hidden]

Hi Ingrid and welcome,i hope you will find this lovely community as friendly and helpful as i have, I try to take each day as it comes and live fully on my good days even though i know it will exhaust me in the long run,some days are better than others and when i need to rest i rest,it does have a huge impact on all areas of our lives,my wonderful dogs get me through they are my best friends,I have also been taking Gabapentin over the past few months and it has transformed my life in the sleep department,i suffered with insomnia for years and years! Anyway enough about me,good to have you join us all,take care Love Della xxx

[Ginsing]

Morning Ingrid welcome to this brilliant helpful supportive site. I actually believe we all think we will get better! It is sometimes very difficult to accept that your life has change but it has some days are not so bad many are horrid. If I do too much I find myself in real trouble for days. So I thinks it is all about taking things as they happen. I am a glass half full sort of person and that helps I believe smiling increases are feel good factor and I try to do a lot of that (Smiling) My sence of humor verges on the naughty which always keeps my giggle muscles in order! The pain killers help and finding your right balance I favour Oxycontin Enjoy the site hugs x gins

[fairycazzie]

Hi Tess,

I definately agree what has been said above, it is about pacing your self and doing little bit, then rest then a bit more,

If you wrk and its physical then try talk about doing something less physical cutting down.

(i self employed cleaner) extremely physical with the whole package,

A lot of driving and a lot of wrk,

So if uou wrk for an Employer then compromise in your wrk load.

I have become an Employer now as it was throw towel in or do something about it, so i got help in as i cried so much to see what i loved been gradually taken.

You get goid days & bad days and like i do i go full steam ahead if feeling half decent then am in bed for 2-3 days as worn out!

I am still learning and its been 2yrs 3mnths solid for suffering but had ups and downs all my life. If you have support then your lucky and if your alone then adking GP or Rheumy of support groups and others alike is another help.

I have hubby and 4 children, 2 left home so got the girls who help out as since Friday i pretty much done nothing as had it mega rough, but its easing up.

I had certain things alll my life and why its come out of woodwrk now is unbelievable, so sometimes its life and stress or trauma than can set things off.

For me i believe the trauma of a simple operation that turned into disaster caused it all.

There is great support on here no matter what it is about volunters, admin and your regulars will help along the way to either have a talk be supportive and if bad day they great help, if goid days get blogs on tell us silly things no matter how big or small.

Its about listening and been there for your fellow sufferers as those who do not

Suffer nor understand it then it is so difficult to deal with.

I printed information out on it so if friends, family cannot take on board what going through i give them a little envelope with info in and it says

I am still me just read what comes along with me now.

Just as if you meet some one andthey have kids and you dont or a disability etc, its a package and either they accept or best way is keep away from those cannot get along.

You are fragile, delicate and will need TLC at times.

Ohhh and i talk tooooo much rubbish aswell as i type as talk no idea whats coming out half the time lol..

Bless you and be rest assured its very helpful here xx

Cazziexxxx

[irenegee]

Hi Tess

I too am new to this site, been battling with fibromyalgia since i was in a car crash in 2002.

I have been through every treatment I could get through GP and paying myself. My advice to you is to get on a good anti depressant to keep serotonin levels up, I'm on Mirtazipine and its so much better than amitriptaline but it is a dearer drug so they only give them out freely but worth asking you dr (but i don't have bad side effects from it)

I found holistic therapy's help yoga for gentle stretching, meditation to calm and relax, hot baths and a good masseuse to help ease the pain. You will have good days and bad days and even the odd day when you feel 'normal', i found that it is best to let the bad days just be that and not beat myself up cause i cant do anything.

i also found that I had to start saying yes to social invite as you can find yourself becoming a hermit because it is easier to stay at home it is good for your soul to have fun with others (although it can be painful the next day) i find it to be worth it and it gives you something to look forward too.

Fibro is not a degenerate illness like MS so it shouldn't get worse but i found that your mood plays a lot with the pain/energy levels so do things that make you happy,smile and laugh x

hope something here helps x

[soma1]

its 2.30am,can't sleep so thought i would look on fibro site, i find going to a hydrotherapy pool and doing very gentle stretching helps me relax, it doesn't stop the pain but the warm water does help, same as having a nice warm shower helps. the best advice i have to offer is listen to your body and like the friend above quoted, do things that make you happy and don't do too much,and above all as it took me 8yrs to adjust to having fibro and the new life that comes with it.forget what you could do, and do what you can do with your fibro life. after all to the outside world we look fine most of the time, if only we felt fine lol.... tc soma 59 x