DIFFERENCES BETWEEN CFS/ME/FIBRO

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DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby shazq » Fri Feb 25, 2011 1:46 pm

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.
Fibromyalgia Awareness Day May 12TH.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby Ldyalb » Fri Feb 25, 2011 2:01 pm

Very interesting, thanks :)
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby viota » Mon Feb 28, 2011 8:05 pm

Interesting :) I have both me and fibromyalgia so its good to have info on both.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby melisa » Mon Feb 28, 2011 11:24 pm

Hi I have just been diagnosed with fibromyalgia today and I have all the things you listed, I was led to belive that that was all part and parsel of fibromyalgia, I think the exhaustion is the worst bit for me!
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby viota » Mon Feb 28, 2011 11:26 pm

Actually the pain is the worst part for me.It gets so fustrating when i find it difficult to walk it would be so bad.I have learnt to deal with
the exhaustion.Im mostly in bed these days
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby melisa » Mon Feb 28, 2011 11:31 pm

Ah well I have two very young children so staying in bed is just not an option for me! I find the exhaustion is the bit people understand the least! they just think I am being lazy! although I thouroughly agree that not being able to walk is incredibly frustrating especially when I feel like I am failing my kids by not taking them out!
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby viota » Mon Feb 28, 2011 11:40 pm

With two children i doubt staying in bed is an option too.Yes i totally agree.I find people just don't understand and it seems to me that they think your making it up.I'm only 22 and they expect me to be a fit healthy young woman.They can't put their minds around the fact that i'm not.Yes it is incredibly frustrating especially if you have two children i imagine. Not being able to walk up a hill or when its bad down a street without difficulty or in your case not being able to bring your children out.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby melisa » Tue Mar 01, 2011 12:23 am

wow 22 that is young! Im only 26 but its only got really bad in the last couple of years for me! at 22 I was still able to do most things! I tried to go to a concert last week, that was a big mistake lol! I couldnt handle the walking, standing, noise or lights lol! it was a massive wake up call that I just cant do the things I used to! on the plus side shopping on line gives me the same buzz as going out to the shops with the added advantage of not hurting lol!

People not understanding is def a constant battle though my friends both the same age and a lot older can do so many more things than me they just think I ruining their fun when I have to sit down, take a break, go home early or not do things at all!

My husband trys to be understanding aswell but he got used to coming home to a clean house, children ready for bed and dinner on the table, now that less and less is done everytime he comes home its a real struggle for him especially when he can see no physical reason for me not being able to do things! Reading him some of the stuff on this site does seem to have helped a bit though! :)
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby viota » Tue Mar 01, 2011 12:37 am

Yeah a year ago i was relatively fine and now im not.Yes i think its a good idea reading him stuff from the internet to get him to understand.It's not your fault you can't do as much as you did before.Dont feel pressurized into doing it if you can't do it.Pushing yourself will only make you feel worse.Shopping online is much better :) I can relate i tied going to cork city last week but i felt terrible and i shouldn't have gone.I booked rihanna tickets a while ago for october and i cant cancel them i dont know how im going to manage.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby Ldyalb » Tue Mar 01, 2011 9:35 am

Viota, I'm the same age as you and was also largely fine a year ago. I've had symptoms of Fibro for years, RLS as a child, getting achy legs on long walks. When I was 14 I got glandular fever, after that I started getting painful hands, was tested negative for Rheumatoid Arthritis and told I had tendonitis. Was largely fine since then, got periods of stiffness when not moving much but just assumed the move from school to the 6th form and dropping PE classes was making me unfit. At Uni I had some periods of exhaustion and dizzyness and was tested for diabetes, my GP eventually concluded it must be low blood pressure and told me to eat lots of carbs and never to skip meals. The pains began around a year ago (I had a fall in Jan 2010 on the ice and think the shock of that to my coccyx may have triggered the pains), I noticed my knees hurting when walking up and down stairs and that sometimes my legs and ankles were sore when out and about, this was only occasionally and as my father's arthritis began in the knee I ignored it, trying to pretend I was being overly anxious about 'normal' aches and pains. I was working at a butcher's at the time and lugging 10 kilo trays of meat around (my biceps were bigger than my OH's at that time) and coping pretty well. Now I struggle to carry my shopping home! It's weird just how much can change in a year.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby viota » Tue Mar 01, 2011 10:21 am

Thinking about it i did get really achy legs as well as a child and as a teenager.Ive always had a painful back and shoulders that would flare up now and again so maybe it was the fibro and i just didnt know.It would explain a lot.
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby shrimp » Sun Mar 13, 2011 12:59 am

i have fibro and when symptoms starting after c section feb 07 i had pain and weakness and dropping things, pain got worse, dropping got worse pain got more widespread, was tired anyway with new twins, but now 4 years later the exhaustion part is over whelming and has been for about 8 months, the pain is now all over, at the moment main pain areas are back, neck, head, still painful feet and now realise the only shoes i am ever gonna be able to wear are trainers....(all my lovely ankle boots sit int he wardrobe :( ) and still the hardest part is trying to not say no to my twins - even trying to pick them up (they dont weigh 2 stone yet so still little) leaves me shattered and in agony, my partner now given up his self employed work to look after me, twins, house etc as just dont know when i mite drop off !!!..fall down etc etc :cup1:

i hate this problem, i hate the looks i get from people from parking is disabled bay, i hate mother in law not understand and hate that my partner is now more my carer than my partner/lover etc......and i hate that i cant be the mother i wanted to be to my kids - i worked before them and now i am useless !!!!......hahahah

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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby karenjwik » Wed Mar 16, 2011 5:20 pm

[color=#BF00FF][/color]

My pain started in my elbow and spread to my shoulder within 3 weeks. Agony wasn't the word. 2 steroid injections later I felt a lot better, but had no idea about what was to come. Had to give up work and took a year to get back on my feet.

That was 14 years ago. Now I have since had 2 children who are now 12 and 10 but I think it helps that they've never known me to be any different. Mum has Fibromyalgia, but to them I'm just Mum. They know I have bad days and good days and help me out when it's been a particularly bad week.

I too have found it frustrating to try and explain to people, but as the years go on they do tend to understand bits. I have completely changed my lifestyle now to make sure that the bad days are less and less. I still manage to work and I declared my disability and work for a very understanding organisation with an understanding boss. I have a mobility scooter - but can't get around because the organisation unfortunately has treated its equal access as a tick box exercise rather than an equality issue.

Having FMS and being a single mum is very difficult at times. I long for the days in the summer when I can go slowly because the kids are enjoying the sunshine! If I could move to a warmer country I definitely would.

The changes that I now have in my life are motability car, scooter, walking sticks, online shopping (never ever go shopping any more because it is so draining), xbox and sky movies to keep me and the kids entertained, tumble dryer, robot cleaner (one of the best things I ever bought!) Now I know some people may look at that list and think it all costs money - even the £5 for Tesco delivery - however, I don't spend money on much else so it means I have money that goes on these things. Spending money on these things means I have a better quality of life because I have a little bit more energy than I would do (or a lot more at times) if I did the shopping or ironing or tried to hang out the washing on the line.

It is difficult and I've just found a FM support group in my area after living here for 9 years! The Dr didn't know about it, but that doesn't surprise me. Apart from the pills, he's not interested in helping me. Went to the pain clinic and it was a complete waste of time. I'm now having massages and reflexology to help me out.

So glad this online group forum is here, sorry for the waffle!

Brain fog is a big problem and affecting my work/life more of late, but having a diary makes sure I at least remember some thing.

Hope everyone isn't having too much of a bad day.

Karen
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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby denys » Thu Mar 17, 2011 12:24 am

Hi Karen and :welcome: to the forum glad you've found things that actually help with your quality of life, :hugs: :hugs: :hugs: :hugs:
Denys

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Re: DIFFERENCES BETWEEN CFS/ME/FIBRO

Postby fionarodriguez » Thu Mar 17, 2011 11:38 am

hi
that web link is useful and explains more. if i walk around asda or tesco im knackered by the time i get back to the car..i ust hate myself as i cant do the things i used to love doing. even spending a day with the grandsons im knackered b the afternoon and im only 44. one thing i keep doing is forgetting things or names or getting names mixed up x x
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