8 years on and getting worse & no help....

[sarah111]

Hi can any1 tell me is there stages of fibro? Reason im asking is when i was 1st diganosed 8yrs ago i had minor acks an pains but now i feel like im falling apart..My bodie's so weak and tired,Im so sore between the fatuige and nerve pain i feel like im getting worse more than better.I have tryed everything they sugested frm walking,swimming,relexn on my bad days and there's no differance.My bodie is so weak that when im going out im looking to see wat distance there is betwen the car and were im wanting to go and saying to myself there is no way i cld make that! I never thot id see the day i wld be saying this as i was always very fit an worked 2jobs an raised a family along with going to the gym.

It was sugested i get a wheelchair and as much is i feel i cld benifet frm it im embarraced to use it as i dont want ppl no im sick or the fact they will say i look ok.Is this the next step for me or will i get my strenth back again? No1 seems to no the outcome of this illness an im so fustrated not knowing myself wats happning to my bodie....Any information would be great as the weakness in my mucles has only been frm around xmas onwards....

Thank u

sarah

[Hidden]

I dont think there are stages of fibro, but like you Ive got worse, when I was diagnosed, I was told Ive probably had it for 30yrs, the lasyt 3 yrs have been a nightmare, I now find it hard to walk, I got a wheelchair, and a personnel assistant, all I can do now is get the help I need

[rafiki]

hi sarah, i have never been told about stages but have found that with changes of meds i always come off worse! my pain has increased over the years and my mobility decreased. i too have fought against a wheelchair but now am waiting on a delivery of one!. i'm telling myself its so i can go out with my family. its the only way i can come to terms with it. and all the aids i now have are to keep me independent. positive thoughts and reasons!!!

if any one out there has been told about stages , i too would like to know! tfor the onlt thing i have been told is to keep using my muscles/ability as much as i can or you end up not being able to do those things. use or lose!

[bruiser]

I dont know if there are stages would be nice to know.

Hi all what gets me about this fibro is we are told it is a non progressive condition, that is rubbish if that was the case we would still be as fit as we were before.

I know i have been getting worse for at least a year and this last few months my pain has increased and there are more things that i cannot do for myself, doesnt that make it progressive.

But Atos still put me in the wrag part of esa, my dr is livid and i told him i will appeal and he will willingly write me a letter, but i have to go and see the job centre today, and i know with my depression i will be in tears and then feel stupid we just cant win can we

take care all x

[sarah111 in reply to bruiser]

I totaly agree will you,if it is non progressive then how come the longer we have it the worse we get???...Same differance i think,for the 1st few yrs i cld tollerated it but 8yrs on its unberrable..think they need to sit down and give us some anwersers....Xxx

[Hidden]

when Kelly my personnel assistant starts working for me, Ill try my wheelchair, I still feel sick thinking about using it

[electricjaws in reply to Hidden]

never ever feel embarassed to use your wheelchair ,in this day and age nobody takes much notice, nobody is going to stand in the street and point at you!! i was about 41 when i first started having to have my boyfriend use a manual wheelchair to get me out if we went anywhere,it was either that or be totally housebound,so get in the chair ,and out of the house even if your carer doesn't go far with you ,it gets you out of the four walls ,bite the bullet and go for it ,you are not alone!!!! x

[motherhen52]

i have had fb for nine years it has not got any better,i have now surcommed to a mobility scooter an would not now be without it ,it has given me some inderpenance back

[Abbeystead]

Ive had ME/FM since 1989 and had to give up work. I was 52 and am now 75. Cant believe I used to run around town in my lunch hour. Worked full time and brought a family up. Supposed that was the reason, I burnt the candle at both ends.Then one of my daughter had 4 children in 4 years,the middle ones being twins and I was helping her as well, having one of them every weekend.(not that I didn't love it). But by God I,ve paid the price. Never go over the doorstep as its far too painful to walk. And the older you get, the pain becomes worse and the doctors care less. Dont feel confinent enough to use a scooter with the fibro fog. Just got used to living the way I do and realise that this is life now. Would be nice to see my daughters and grandchildren a bit more though as they only live 2 minutes each direction of me. Maybe if I hadn't have burnt the candle at both ends I wouldn't be like this now. Too late to have regrets now. I'm OK.

[sarah111 in reply to Abbeystead]

I dont think its to do with burnning the candle at both ends its not your fault u have this alwfull illness, They tell us not to self digenios but they are leaving us no choice coz we need anwersers...i was like yourself and being in a band frm a child i have walked alot of roads an many miles now i cant walk the life of me.

Dont blame yourself u did your best....x

Soft hugs Xx

[Hidden]

Abbeystead, thats it exactly I did burn the candle at both ends, and help anyone with anything,Im 54 but feel like 90, but Im not going to let it beat me

[Abbeystead in reply to Hidden]

Thanks lally. We seem two of a kind. Let us know how you get on with your wheelchair. I have been offered one but my husband pulled a face when I told him - enough said!! We're like Alf Garnet and his wife (silly old Moo). He'd most probably find the steepest hill in Liverpool and let me go..haha! So I think I play safe and keep my feet on terrafirma for now, As long as I can get around the house ok that will do. Itching to get into the garden.When I do I foget and bend down to pull a weed out and then all hell lets loose - quick dihydrocodeine, not that they're any good just take the edge off. Take care love and don't do any wheelies in that chair when you get it.

[Kasha]

Abbeystead and Lally...I so feel for you both...and so relate to you both! I too have always run around helping people, I was a single parent and foster parent looking after over 50 children (not all at once ha ha) then looked after my mum for the last 3/4yrs of her life,I looked after my sister through cancer also. I now feel I just cant do it I had to give up work due to Fybro and thought I could go back to fostering but the emotional stress is getting to me much more now I have Fybro I just dont want to give in to it and do nothing! but alas I feel that day is looming closer and closer. ((((Gentle hugs))))

[Abbeystead in reply to Kasha]

Thanks Kasha. You sound like a chip of the old block. Like I tell my elder daughter, you MUST LEARN TO SAY NO AND SLOW DOWN. My daughter is a Child Protection Officer. Her work is horrendous and she travels all over the country with her work,mostly driving. Should have a caseload of 50 but the way things are has 180,all scattered over G.Britain. Sometimes she is so tired and worn out and has to take to her bed. I can see in her what I used to be but she wont be told. She is 55 and has been doing her job since she was 22. Had asked for redundancy but they won't let her go.

You say you dont want to give your fostering up and do nothing. But isn't doing nothing better then pushing yourself to the brink and become permanently infirm. Give it some thought. Sounds as though it's about time you put yourself first and started to enjoy life because when this illness gets a real hold on you, you really know about it.

Take care Kasha. There's only one you.

XX

[shirlalee]

Like yourself Sarah i have had this for years.it does not get any better i was told years ago every flare up get's worse, like you and many others' I am in consant pain daily. it is so tiring but what annoys me is, when i see some-one I haven't seen for awhile they alway's say how well i look. if only they knew. I have thought about getting a scooter to help me get round, but because i look normal on the outside. i would feel as if everyone is staring at me. i dont' get out much because i lost my confidence years ago. I am 59 but feel 99. hope you get the support you need . kind regards xxx

[Abbeystead]

Thanks everyone for your answers. Seems we're all in the same boat now.Unfortunately,y ou have to be realistic and accept that you can't fight it, just go along with it. Some days, like today, I just sit here on the sofa with laptop on my knee and can't do anything - just standing up is an effort, tummy sore and feeling nauseus. Woke up about 5.30.a.m. and felt I waa dying. Always have a packet of biscuits or crackers in drawer by bed so I can take a painkiller and drift off into a lovely sleep. Shouldn't say this but often think "this is the way I'd like to go", but doubt whether I could do anything so disastrous. Couldn't hurt my family. I'm a very realistic person and know things are not going to be any better. Have told my husband where everything is should anything happen and have prepared myself for the worst. I'm not of unsound mind as they say you are, and my depression is not too bad. Just fed up with this continual pain, and the life I used to have and the speed I conducted it in has disappeared and I am no longer the person I was,not even a bit. Dont worry all you lovely people out there, I'm not going to do anything. But this is just letting you know how bad this illness can get to you. On the other hand you may be able to cope. The bloody thing is, I,like many of you, look so well and young for my age. Would love to go the pub and get pi...d but cant drink now or walk that far. God I sound like a depressing old fart so I'll sign off.. I'll be getting a a reputation for my long diatribes on here - once I start I forget to stop. HaHa!

[willowmuse]

I had never heard of fibromyalgia, till I was diagnosed, never knew anyone with it either. I used to be a long distance runner in my school days, worked from the age of 13 with a paper round...lol road a bike from town to town. Had two children, carried on working, running the houshold, walking everywhere as i never learnt to drive. Then the problems started, first carpel tunnel in my wrist, then elbow, then i moved, started new job, didnt work out, let down in childcare that was promised me by then mother in law, moved again, new job, surgery on other elbow, then joint replacement on thumb,due to arthritis, all that in a space of 4yrs. Put alot of strain on my marriage which broke down about 18mths ago, because of the lack of support, Then I was a finally diagnosed, i was in constant pain, my surgeon refered me and so it began. I was able to handle it at first, took amyltriptlin to start with, on my flare days told to up the dose and take codine phosphate. moved again after my marriage broke down back to my home town, things got worse from then on. Its been a downward spiral from then till now and im getting worse not better, i dont go out for fear of falling as i have done before and am awaiting an operation on the 25th to correct the damage, i use crutches at the moment to hep me around, but they are becoming painful to use now, so it looks like a wheelchair for me soon, i am trying to hold of as much as i can, im only 40yrs old and i feel like im 80, although to the outside world im looking fine, so sick of hearing it to be honest. Im not fine, i want to scream out!!!! Every muscle and nerve in my body hurts constantly, my joints crack and pop, i sound like a rice crispy...lol, i have dizzy spells that make me feel so sick, I have to lie down again, i cant remember the last time i had a refreshing nites sleep. My balance is terrible, my legs shake and go from under me, i have collapsed into unconsiousness (ambulance called), yet my tests say im fine?????? Im fustrated, angry, sad all rolled into one, because im no longer the active person i once was and its killing me, I feel like a trapped bird in a cage. As for stages hun, i couldnt really tell you, like the others i was told this was not a progressive illness (I beg to differ) but judging by other peoples stories and my own experience, somethings not right.

Sorry to go on and on, as you can tell i dont get out much.....lol Blessings, love and light

Willow x