How Fibro is at the start?? Help :-(

[Moo Moo]

Hello all

I am having a hard and confusing time - on top of my lack of sleep when I do sleep I either wake in pain or with night terrors (yet to decide which is worse!)

My question is as I have been recently been diagnosed with Fibro I have been given various booklets, information and researched some recommend websites to help me understand.

The problem is I keep ready that it is non progressive but I seem to have a new area of pain daily and the disabling effect is also growing daily, so what really does non-progressive mean??
Do you just wake up with your symptoms one day and that's how you'll have it or like I'm experiencing have people found that you first have what I can only call a 'development period' or a 'growing into' of you symptoms and how long did it take and in your experience can it just continue?

I am already no longer working due to what started out as back pain from an accident in 2009 but more so from serve panic and anxiety issues from a bowel condition due to (you were just unlucky) surgery.
As medically nothing has been found wrong with my back and in the last 3 months the aches and pains (agony in fact) have begun to spread to my legs, knees, shoulders, neck etc. etc.
I was diagnosed with Fibro about a month ago. I am struggling to walk, bend, sit, lie, stand and my med seem to be doing little to help.
I feel I can take no more and just want to understand if it will reach it peak and stop there or is it as it feels now not going to end until I am crippled by it.
My family are not really understanding how hard this is now for me I.e just had door slammed cause I physically don't feel I can walk around a shop to get food for my family.
Please advise and I thank you all in advance for your time x gentle hugs K xxx.
Sorry such a long drawn out explanation x

[Adele]

hi k,

it's all so confusing and awful isn't it? i expect you have read about flare ups and that people generally have good days and bad days with fibro. some of us aren't so lucky. what used to be a flare for me is now my daily life. i am 35 and my 91 year old neighbour has told me to ask her if i need any help. laugh or cry???

i can't really walk now, i go from bed to wheelchair and back. i have had a rise and recline chair built for me but even sitting in that wears me out and hurts.

fibro is not officially progressive but it does vary greatly in severity. you may be having a flare, your symptoms may be worse because of anxiety or as you say you may be in a developmental phase. whatever the reason the worst thing you can do is push yourself too hard, i think that is where i went so wrong. you need to learn to pace your activity, you also need to see your gp to check what is going on and to get your medication sorted out.

i think only time will tell how things progress but please don't give up hope. i am even planning on going back to uni in september. i am currently commissioning a new wheelchair with tilt-in-space mechanism so i can have a sleep in it.

best wishes, adele

[FluppyPuffy]

Hello Karen, nice to see you on here. I've moved your post into "Where To Say Hello" as I think you'll get more hits here.

What you're describing sounds how I felt when I was first dx'd. There is so much to take in and get used to. It all takes time, and it's the same with meds, with the various ones used to try and manage the condition it can take a while to find the best combo for you.

When I asked my gp about the "non-progressive" description and how it doesn't seem right as I'm getting worse, I was told they look at it in the same way as something like arthritis. Whereas arthritis affects the joints and can make them contort and twist, with FM there isn't that aspect of it, altho there is the pain and stiffness to contend with. A lot of us on here seem to have worsened over time, but not in the same ways. FM affects us all so individually, it's virtually impossible to say what will happen to us with it as it follows no set pattern.

There's no definite way to say how it starts either, altho a lot of us have had things like car accidents, surgery, traumatic events and them developed the illness. The things you've describing could be the start of a flare-up, esp things are worrying you and upsetting you at the moment.

There are some threads on here with info on them to try and help those close to use try and understand what life is like for us fibromites, it might be worth showing some of it to your family to see if it helps things. The ones people usually find the most helpful are "One To Show The Non-Beleivers" and "The Spoon Theory". For the shopping side of things, a few peeps on here use online supermarket shopping to save having to run the gauntlet round the store.

There are other things I could add, but I'm not sure how relevent they would be for you, the best thing I can think of at the mo is have a look round the boards and see if there is anything else on there that might be helpful, and anything else you want to know, just ask it and we'll try to help you with it

[Moo Moo]

Hi x

Thank you both for your replies x I really appreciate you kind words and support. Have had a good cry (hours, so all cried out for today) and a long and productive talk with OH and have decided that I will get to my gp asap to get my pain under better control and then wait till I attend the Fibro progam at the hospital before I drive myself insane trying to come to terms with the lost 'ME' x. Also as advised am going to print off some info from the site to give my OH and children, friends and family to stop the anxiety I am feeling in explaining myself xx so thank you so so much again X Wonderful site - a lifeline for me at all hours of my difficult days xxx try to now x new day tomorrow x

[FluppyPuffy]

Sounds like you've started to take some steps in the right direction Karen with getting things back under some control, don't worry if it takes a while, just take each bit as it comes and steadily find your way thru it. I've put a linky on to the NHS Choices page about treatment for FM to give you an idea of the meds used to try and manage it, thought it might be helpful for when you go and see your gp

There's other info on it as well that might be helpful to you

[nutty1]

sorry you going through what so many of us are or have .i agree with eveything flups has said .its alot to take in .i too was diagnosed with m.e back in the 80s .it kept disappearing then coming back .then in 2002 was diagnosed with another neuro prob then bout 4 years fm .hope you get sorted with meds at drs.and your family come to terms soon ,as this all adds to your illness

[loubie]

hi kaz
it is a very hard illness to come to terms with
as there is so many things going on all the time with it
dose make you feel as if you are going

all i can say is take your time with everything you do
listen to your body, when its had enough, rest for a while.
you have to pace everything do a bit and rest a bit.

you will be surprised how much you can do by doing it
and not completely wearing yourself out

hope you are feeling a little better today

[astoldbyellana]

I am going through the same thing at the moment and some days walking is ok but other days i am staggering and when it hits my hip area walking is almost impossible and i am staggering like a drunk person. I have been mistaken for being drunk a few times.

[viota]

astoldbyellana you poor thing i can relate.im either limping heavily or shuffling like an elderly person =/

[astoldbyellana]

somedays I am walking around my town centre i feel like i am running a marathon. But I try to concentrate as much as my good days and dont let my bad days/bad moments get in the way.

[viota]

you have good days? i dont.

[astoldbyellana]

Yeah they come with time okay i don't many really good days but i have worked out a pattern and it helps

[viota]

i think im still in the developmental stages. seems to be getting worse every day.

[astoldbyellana]

Mine is a bit like that at the moment although i am working i am finding it a lot to cope with. Like i am going through phases in the day when the pain is too much to handle and then it eases off a little. I am a bit of a yo-yo all week though.

[viota]

anything i do makes me feel worse. having a shower is an ordeal that causes me to be in more pain