What's the worse case scenario with F... - Fibromyalgia Acti...
What's the worse case scenario with Fibromalgia? X
Hello there Debz, I am interpreting what you mean by this question, so my sincere apologies if I am misinterpreting you.
I personally don't think we can think of Fibroymalgia like this, this is only my personal view of course. It would be like looking on the bleak side of life and I tend to live my life one day at a time and to try to draw on the positives as opposed to the negatives. This is how I deal with my Fibromyalgia on a daily basis.
Having said that the prognosis for Fibromyalgia isn't an exact science, each case is different. No-one can say for sure how each case will progress or develop. Some people with Fibro deteriorate whilst some improve considerably even going into remission with no symptoms at all.
If we ensure that we get the best treatment, help and support we can, then all of these things can make an incredible difference to how we live our lives with Fibromyalgia and can increase out quality of life and general well being. There is hope out there with increasing research into Fibro and relative treatments.
To quote from our main site on the prognosis of Fibro -
'The top Fibro experts consider that Fibro is "eminently treatable" (Daniel Clauw MD, August 2008).'
Here is some more info on this article -
fibroaction.org/Pages/What-...
I hope this helps you. If you have any queries or concerns please feel free to post them, we will always do our best to help and support you wherever we can.
Take care.
(((hug))) xxx
Libs
Hi Libs, thank you for replying. Most days I do try to remain
positive & will not let my symptoms win. I have had a really busy
week ( I own a cake shop & make and decorate celebration cakes)
with late nights every night. Sunday is my only day off
and I suffer greatly on those days, I spent most of
the day in bed today. It's these days that really get me down & feel
my life has been taken from me. None of my family support me,
they think I make it up. My husband only supports me when I have
a smile on my face. When I don't he says I'm miserable which
really doesn't help. I sometimes worry for the future if I'm this bad now
what will I be like in 10/20 years. Guess I'm just having a bad day:0(
Debz xxxxx
Debz, sometimes it's hard for our partners and families too to understand how we feel and the impact of Fibromyalgia on us and also on them. Communications sometimes break down, we just don't talk about it and it gets brushed under the carpet.
Is this perhaps happening with you, your partner and your family maybe? If so, have you considered getting support for all of you regarding this.
If you have a local support group near you, this may be able to help support you both or maybe your partner may want to contact some organisations that help support families. Outside support can help in situations like these, it might be worth considering.
Hopefully gaining support will help all of you which should have a positive effect on you too.
I hope you have a better day tomorrow Debz. (((hug))) xxx
Libs
REPOSTING AS QUESTION DUPLICATED FOR SOME REASON - Apologies for this!
Libs - Admin
_______________________________________
vivien60 17 minutes agoEdit | Delete
That's hard to answer as every one seems to get it differient
Some people after a time seem to need care at home, but they
May have other illness as well
Some people have trouble walking and have to have sticks
Or a mobility car,
The professionals say that it does not get worse, but for me
It has and for a lot of people, I think if you get your medication
Correct and do things within your limits, also try not to get
To stressed out over things, then I think we can look forward
To a long life like other people, after all it's not life threatening
Just life changing, I think as the years go by you get used to
Pain and you do learn to ignore it a bit.
I hope you get your answer, but I think it depends on the person
And you might even go into remission for a time, I have just had
The best week I have had in the last few years still in pain but I
Feel good, so who knows
Viv
Reply to this
Thanks Viv, what help & support do you get & you mentioned
it has got worse for you... In what way?
Debs xx
Worst case scenario.......living forever... Sorry having a bad day, but that's the worst I can think of
VG x
I'm with you there VG! Xx
That's exactly what I thought x
Going back to my early childhood years I'm 61 now and I can remember my mum and gran talking about a friend of theirs who had become BED RIDDEN as they used to say with fibrositis which is the old name for fibromyalgia I think that must be just about as bad as it gets. unless someone knows better?
Take care God bless
Bob
That was a long time ago though Bob and so much research has been done in all those years. Fibromyalgia Awareness is increasing all the time and will continue to increase as will research.
It doesn't have to be a bleak prognosis these days with the correct medications, treatments, help and support. 
I can understand how you are feeling. I am having days like that and I understand the family just not getting it, you start to resent the fact that they come across as selfish sods. I am not on any medication and am just self medicationg with panadol to try and get through each day and night. It just looks like a long dark tunnel and not having any support from family or help at home after working all day and week is the pits. I ahve expalined, I have given them reading material but they just don't get it. I commiserate with you so much.
Hi there, you have hit the nail on the head! That's exactly how I feel, my family Just dont want to know, tell me to stop moaning & get on with things. I now resent them big time, even my Mum, and don't really want anything to do with them, same goes for my so called best friend. I work full time too & it's hard to cope. Life sucks & the
future looks bleak.... What joy.
Take care & I will be thinking of you xxx
It took a long long time for my family & friends to realize I was not at it but as the years went by the pain became worse so now they help everyday from dusting, sweeping & washing floors, cleaning bathroom, washing & drying bedding, so I am ever so greatful for their help and my 75 year old mum still takes me to appointments and appeals for DLA . I hope you get the help needed .
Aches
((Soft hugs))
I too often ponder that very question!! - and to be honest it terrifys me. In my more positive days I try to remain upbeat, continue working partime while raising a family, use will power and sheer stubborness to get me through the day and take the odd painkiller for pain. In my down days I battle fatigue pain depression anxiety and sheer weariness, yearn for my oldself and hate this horrible cursed condition and the lack of understanding shown by family friends work collegues medical professionals and even strangers.
I dont have any insightful answers to your question just wanted you to know that ur not alone in your fears others on here share them and together we can voice them, debate them, share them, search for reassurance advice and support. And hope for improvemens in treatments awareness and understanding - heres hoping
Regards dixie xx
Thanks Dixie, thsts exactly how i feel & is a huge help to know others feel like I do
& I'm not going mad!
Xxxxxx
For me the condition has got worse over the years and i have major problems with no sleep, doctor can give me sleeping tablets but cant take them every night and the medicine for this condition has had no effects at all, i have stopped taking it as it had no effect. I have been getting severe spasms in the head, face and neck and problems with a buzzing or ringing in the ears. When i go to bed it gets worse. I have had severe numbness throughout the body with has effects on sensation in the body, not getting the sensation when i need to wee. When the numbness is severe i am not with it and have left the cooker on, forgot. For me the medicine does not work and my symptoms have got worse over the years.
Josie there is help out there. Speak to your GP about all your symptoms and for your meds to be reviewed. Our symptoms can change as can our Fibro and we need to discuss this and update our GP's accordingly.
If we don't tell them, they can't help us effectively. Please see your GP and I am sure you will be able to manage better as a result.
Take care and please know we are here for you and we do understand. Admin and Volunteers have Fibro too!
(((hug))) xxx
Libs
Hello everyone, if you feel your partners and families don't understand how you struggle with your Fibro it is sometimes because they are struggling with it too. They find it hard to accept how we may have changed, they feel helpless and don't know what to do about it all to help us.
This can cause so much stress with communications breaking down too between us, our partners and families. However, there is help out there for us and for our loved ones too. If you could all gain some level of support, this may help all your situations.
You may have a support group locally, partners and families are welcome there too. It helps everyone come to grips with Fibromyalgia and how best to deal with it in our every day lives. This might be worth thinking about.
Also there are organisations out there to help and support families through illness etc.
We are always on hand too to help and support you all in any way we can, so please if you want to contact us personally please feel free to do so using our private messaging system. (Click the name of your choice, this will take you to their profile page, then select the option on the left "send a message", we will get back to you asap)
Hope this is helpful.
(((hug))) xxx
Libs
Thanks Libs. My family just don't get it and are selfish. I am the glue and the driver of the family so now that I am not coping and resting all weekend they are just ignoring the fact that I can't do what I used to. I have asked them to help with the lceaning anhd cookign but no one lfts a finger. I have tried to just not do it but I can't live in filth. So game over I just do it and I will eventually drop I guess. So I will just carry on as though I am still OK and crash and burn when it is too much. The local support group wants $$ to join and after all the thousands I have spent over the last 8 months, to be told that I have to pay a joinging fee before I am allowed to haev any info etc I decided they can go jump! I understand they are volunteers and rely on donations but to nnot even give some info for free is beyond my understanding.
I understand, I am the hub (as most wives and mothers are) of our family. If I am not functioning, the entire family seems to stop and nothing gets done unless I gently persuade. The problem normally is that the family through no fault of their own just don't understand Fibro at all. Mine certainly didn't. For the first year they had no concept of how I felt, what was happening to me at all.
What makes it doubly difficult (no offence intended here to our male members), I live in a household of three men, hubby and two sons. Hmmmm, say no more. They just don't notice things piling up, "leave it to Mum" etc.
We reached a point where it was "sit down" time, we had a family talk, I showed them The Spoon Theory and literature on Fibromyalgia and asked them calmly to please read it all. They did and fortunately from that point on things changed. I now get cups of tea made for me, my youngest son hoovers the house for me, and hubby and my other son will bring the washing in, stack the dishwasher, all things that make a difference and is less for me to do.
To pay a joining fee for a support group is a bit steep in my personal opinion, I wouldn't be too keen on that either. I know when I joined my local group at the time, I paid £1 a time subscription which I didn't mind at all, but pay to join is a bit much. Groups do vary though in my experience, I've been to a couple over the years. Some are money obsessed I have to agree with you there when their sole aim is to support and raise awareness. Only my personal opinion of course.
Perhaps try to have a sit down talk with your family SM, that might be the best way to help not only you but your family too.
Hope this helps. Take care and please know that we are here for you at all times.
(((hug))) xxx
Libs
I'm with you there someone's Mother (sorry don't know your name. My husband Claims to understand & support me but when it comes down to it, it doesn't
change anything, he does no housework, no washing, no shopping, nothing, just lazes around & watches tv. He tells me to leave it. I work full time & in the evenings.
He has lost his job & injured his back & either stays in bed or lays on the sofa. I'm suffering greatly with pain but who is doing everything.....me! I have reached the stage that I have given up & want to leave him. It's very upsetting & destroying!
Debs xxx
Hi debs I know this posting is very old, but I was wondering how u were doing? Are things any better in the home now, with housework etc, are they helping more, do they understand more or are you still in the same old status quo. How are you feeling too, are you coping any better with your fibromyalgia? Have you cut down on your working hours because I noticed you worked a hell of a lot of hours, no wonder you were burnt out. Hope I get a reply, I felt such an attachment to you, like we had mirrored lives but I'm about 21/2 years behind you n my husband works, but your story really touched me 😊 Hope I get a reply. Take care x
Well I've just turned 17 and I was diagnosed with Fibromyalgia a couple of weeks ago. At first it all seemed like nothing: 'oh who cares' and then I got home and I just cracked. I cried and cried and then I felt pathetic for doing so, does anyone else tell themselves to 'man up' because at the end of the day, it's not terminal and we should be grateful for that? I do, but in reality, we can only deal with what WE personally have, and some days it feels like everything is falling to pieces.
In college no one cares about it, it's a 'deal with it' situation, but when you're living it it feels like a nightmare. College, none of them know how emotionally and physically draining it is, being constantly tired and feeling like I've had my life sucked out of me. Being in constant pain and feeling tears well up throughout the day, teachers becoming angry because my grades are slipping due to the fact that I just can't concentrate feeling like this. The worst part is going from a 6 hour day in secondary school to a 13 hour day in college. 'Oh, welcome to the real world' well that's all very well, but I get up at 6am and get back home at 7pm, and I'm expected to do and extra 4 hours doing homework a night, have tea, sort everything out and actually try to relax - all whilst trying not to fall asleep the second I get home because I'm so tired.
Sorry, my point is that no one tries to understand and puts this pressure on all of us to 'lighten up' and pull our bums into gear and since I'm a guy, I have to 'man up' and stop being so pathetic and acting like a girl? I think personally, for me, that's the worst case scenario; being all alone with people being so damn ignorant and not even trying to comprehend what is going on with us.
However, I've done a lot of research, typically being a worrying teenager, and seeing how distressed many people become. So much so that committing suicide may become an idea because they're tired of what is happening to them. I think that is the worst case scenario (but as I said, it differs for different people and different circumstances) : feeling so helpless, or so distressed that they want to leave. I don't want to act like I know everything about all this, and all the details that led to each case, I'm just saying that from multiple sites and personal accounts that that could probably be an extremely distressing part of Fibromyalgia.
I'm very sorry this is so long, I needed somewhere to rant, and as I said, friends don't do much at the moment. and I hope I don't appear to act like a know-it-all, it's just an idea to the answer of this question.. Thanks to any one that bothers to read this, I'm not surprised if it's quite annoying haha.
Curtis x
Hello Curtis and welcome to our forum here at FibroAction, you are most welcome here.
No need for an apology, feel free to tell us how you feel, we are here to help and support you where we can. We do understand how you feel, we are all in the same boat here, we all have Fibromyalgia and many of us have other health conditions too. Even Admin and Volunteers here have Fibro!
I am so sorry you are struggling at college, we have some other younger members like yourself here going through college, you are sure to come across them here too.
Have you tried Student Support at your college, speaking to your tutor etc., about finding college and all the studying, homework and long hours etc very difficult to see if they can help and support you in any way?! We usually suggest this to our student members.
If you have any worries or concerns Curtis, please feel free to ask, we are always only too happy to try to help where we can.
Best wishes
Libs
Admin
Hi Curtis, your message was not annoying, far from it, we have a right to rant when we feel like this! If all us fibro sufferers could live in the same community we would be a lot happier. I hate to read of young people suffering, it's not fair as your life is just beginning. Coming to terms with this is a big deal & sometimes wish i was unaware of it now. However that said I won't give in & I push myself to succeed & the others can go their own way. Get the help at college you deserve as you deserve to succeed as well.
Debs xxx
Hi Curtis, like you I also went through collage with FM and I did my work on the train on the bus and even in the bathroom ( called in my house the library ) the only place you could get peace and quiet. I totally feel for you , the positive side of it all is that if you could get that deep into your work , you forget your body exists fora while, like walking and counting the steps as this allows you to forget the pain for a while.
Take your time to find what works for you and remember most of us all old pros and tend to exercise, swim, meditate whatever it takes. Wish you luck in the new adventure of the ever changing body.....................as my daughter says, may the force be with you.
Hello Curtis,
Welcome to the Forum! I'm 23 and studying my Masters just now, I totally understand about your college situation. My university Disability Service has been great and put things into place to help me about the university. However, my course coordinator and a few other lectures don't seem to care, even after me explaining! Your college should have a Disability service and should be able to get your some equipment, extensions on your coursework etc.
Hope you've had a good day
C x
Everybody has Fibromyalgia in a different way. I believe if I didn't have all the stress in my life I wouldn't be half as bad as I am. I wish I had support as that is what I lack and I stress over the fact that nobody cares about me. As we all look well it's hard for people tp believe what a restrictive life I have and the pain. if I do a little bit more I spasm up and can hardly walk. I take pain killers and eat a lot of chicken and turkey as these contain serotine which we lack. I also take Micromins (drops) which helps with energy. A short afternoon rest helps as well. I use a wheelchair sometimes as after a few yards of walking my legs go into spasm. Stay calm and eat well.
Hi Aashaw, please before taking any supplements (MicroMins) check with your GP that these are compatible to take with your current medications. Some supplements can be dangerous and even toxic when taken with medications. It's always best to check.
Help with benefits please x
what's wrong with this picture
what is Fibro and what's the difference with ME
Just the worse day ever 
