Progression?

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Progression?

Postby Katblack » Sun Sep 29, 2013 1:07 am

So everyone tells you FMS is not a progressive illness but I dont believe them, I feel worse now than I did a year ago despite doing a pain management course, recently my knees have given up, my knees were always ok! Now they ache all the time but getting up off the sofa is causing me terrible pain.

I seem to have developed intermittent jaw pain, possibly neuralgia and random shooting pains in my hands and feet for no apparent reason, I am also becoming more clumsy, is that FMS related? I have scalded myself on the kettle and then burned my hand later in the day today, I seem to forget what is hot and what isn't, I'm becoming a hazard and its beginning to scare me.

I don't k ow what sort of answers I am after but I just need to vent somewhere where people know what I am on about, thanks x
Kat x

Scoliosis, 2 major spinal surgeries, DDD in neck and lumbar spine, Spondylolisthesis, HMS and now FM!
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Re: Progression?

Postby libbiek30 » Sun Sep 29, 2013 8:56 am

I seem to get different symptoms all the time. I'm not worse than a year a go as I have lost weight and this set has helped my pain, especially my knees. But I do burn myself a lot and struggling with my hands , don't have any strength in my fingers and my fingers are very sensitive to touch it is hurting my typing this :-x
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Re: Progression?

Postby tonydin » Sun Sep 29, 2013 2:24 pm

kat i feel worse evry year ,, and all the thibgs yur describeing i have suffered ,, it just goes from one thing to the other and back agian
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Re: Progression?

Postby 19butler-2008 » Sun Sep 29, 2013 2:54 pm

Hi im 23 I've had fms since I was young and it been getting worse each year. some time I feel like im 90 and not 23 and I have problems with my hands and im very clumsy to since I was diagnosed
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Re: Progression?

Postby Leannellie » Sun Sep 29, 2013 3:36 pm

I'm really clumsy too and forgetful. I find cups of cold tea all over the place. I put coffee in a cup and then a tea bag!!!!!! I forget the ovens on and frequently burn food. I am a liability!!!
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Re: Progression?

Postby fibro-lu » Sun Sep 29, 2013 5:12 pm

my symptoms too got worse each year

it starts about this time of the year (cold and wet) until around February/March
then it seems to get a little bit better around spring until autumn again when it gets worse again

it's like getting worse 3 units over autumn/winter and getting better 1 unit in spring, if that makes sense
but all in all the symptoms increase year after year

now that I am retired on health grounds, I hope to be able to manage symptoms better etc
all the best :cow-wave: Lu
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Re: Progression?

Postby Diane64 » Sun Sep 29, 2013 5:35 pm

I would have to agree with this...managing with all the ailments that come and go with fibro has gotten alot trickier i would at some point like to consider stopping alot of the tabs i take but in reality i very much doubt i could which is scary!!.
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Re: Progression?

Postby FluppyPuffy » Sun Sep 29, 2013 7:36 pm

Things have definitely changed for me over the years. New symptoms have appeared, and their intensity has increased. My capabilities have changed as has the length of time I'm able to do things for. I'm extremely slow these days, much to my brain's frustration as that just seems to be whizzing round, faster and faster.

I don't know if it's due to my pawlynesses being progressive, or if it's due to me being more aware of my symptoms and things these days and I'm actually living with them and adapting to how life is now with then being my constant companions :-? :-? :-? :-?
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Re: Progression?

Postby Karou » Mon Sep 30, 2013 7:22 pm

When I was first diagnosed I felt rubbish but better than now. Seems that there's always new pains or other symptoms finding a way to irritate my body. (the other day I had a smell of dog poop all day, nobody else could smell it)

Not sure why doctors say it's not progressive, I'd like to know what their proof is because so many people with Fibro say they get worse over time. :(
Gentle :hugs: :hugs: , Karou

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Re: Progression?

Postby fibro-lu » Tue Oct 01, 2013 3:16 pm

as an addition to my last post ...

I do cope better mentally
and know the medsI take better and know how/when/how much etc to take
and know better to plan activities and the rest/immobility which I will need afterwards

and i hope I have now learned that I still can do (nearly) everything (with also breaking through the pain etc) as long as I am prepared to cope with the consequences (resting/bed ridden etc for a week or so) which is acceptable for me because in that week in bed I can mentally feed on the stuff I did, if that makes sense

ie went to a party plus also helped with setting up and setting down
I knew I would only manage that on borrowed time
mentally the joy I had then and still have is well worth

this took me a long time to realize, better of course is pacing, but every now and again "boom and what's it called" works for me
but then I am single, no children or anyone else to look after, newly retired etc
all the best :cow-wave: Lu
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Re: Progression?

Postby SchroedingersCat » Tue Oct 01, 2013 3:31 pm

Hmmmm...depends on how you define progressive. I've added new symptoms and types of pain to the list I had when I first started to suspect fibro, but worse?....not really. And lately I've learned that I can do more than I thought if I grit my teeth and put up with the pain. So, so far, in 3 years of full blown symptoms and a few years before that of mild and intermittent symptoms, I'd say things are different but not actually any worse. But as I always point out when my experience is not the same as that of the majority on here, I have no other conditions and am very fit and active so starting off with advantages over many other FM sufferers.
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Re: Progression?

Postby whoami » Tue Oct 01, 2013 3:46 pm

I don't think fibro gets worse as in it progresses like a cancer in stages. I think that it is how we treat and handle symptoms that makes it seem worse.

If it is a week when you are dealing with let's say 3 symptoms and then another 2 pop up, then of course it will seem worse. If we do that little too much and there are days when it is just a wee bit too much, then our symptoms are more vivid.

Natural ageing, things that happen to people if they have not got fibro, things like the flu will make fibro patients feel like fibro has just increased ten fold.

I feel that if you have fibro, you have fibro. Nobody has it any worse or less than someone else. Like being Diabetic, you are or you are not. What type of meds or the amount, you treat it with does not define it's intensity. It is how you can cope, treat the symptoms that will make things look different.

Over the 24 years, there are days when I feel this is getting worse but then I realize that I have either caused it myself or there are just too many symptoms present at once.

We tend to blame everything on fibro therefore if something such as the flu, monthly camps or a simple headache appears we just automatically assume our fibro is progressing because we feel these symptoms a little more intensely.

It is what it is. We can treat symptoms and only hope to find relief.
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Re: Progression?

Postby painprincess1 » Tue Oct 01, 2013 4:05 pm

yep id have to agree its not progresses in the scene that it will kill u as pp said. but i believe it does progress in new pains new probs and many pains getting more painful over times ive had this over 10 years now im alot worse then i ever was.but im still standing still doing house work and bringing up 4 children .its just i have to do it all at a slower rate.my new aim is to walk the dog every afternoon for my dad .he does the big hour one in the am i need to lose some weight and i think the fresh air would do me good.cant always get out everyday.
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Re: Progression?

Postby binty » Thu Oct 03, 2013 5:54 pm

Same for me. "It's not progressive". I know it's not going to kill me but I guess what I'd like to know is; Is it going to put me in a wheelchair? My symptoms have definitely worsened in the last 18 mths / 2 yrs. My ankles, hips and knees have become very painful upon walking. One of my knees gives way on me, my hip feels like it might dislocate and my ankles swell. All my Consultant said to me was that I need to loose weight, get fit and basically get on with it. I tried to explain to him that exercise makes my pain worse although I do try to walk a lot but when I do I suffer for the rest of the day and even the day after. I wish that those that don't understand could spend a week in my shoes just to see what it's really like.
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Re: Progression?

Postby whoami » Thu Oct 03, 2013 6:39 pm

binty....to ask is fibro going to put you in a wheelchair, you are going to have to look into yourself to get the answer. We can say sometimes we have no idea when or why symptoms will present themselves, or we can say we know exactly why, sometimes for no reason and sometimes because of ourselves.

How we accept fibro, how we treat symptoms, how we take control will partly, mainly, determine our future life with fibro.
If we sit back and let fibro make all the rules, if we define ourselves only by fibro then we all could be permanently in bed, tragically depressed, lonely and blank, zombie like.

If we are honest, we have all been there. It is up to us how our lives are going to be lived. We can allow fibro to be in control or we can take control of our own lives. Things, our lives, will never be as they were before fibro. They will be different. Different...not ended.

We can take control, accept what is and control it. Use all the tools out there. Tools...Dr's, medication, excercise, everything we can. The main tool is ourselves and our attitude. Accepting, moving on, will give us quality of life.
It will not be easy, we will all hit lows where we feel we can't go on. We will always have pain and the symptoms of fibro.

However we can control them to a point that we can live.....A happy, productive, loving but mainly "in control" of this painfully long life we are all living. Stay strong and believe in yourself.
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