Posing a question regarding "non-progressive" condition....

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Posing a question regarding "non-progressive" condition....

Postby Queenie_70 » Tue Nov 04, 2014 9:58 am

Me Again,

I have had a lot of thoughts lately, and I love that I can put them down in words here, so thank you for that.

My question is though, when I first joined this forum, I wrote that I thought it was a joke that the GP say's this is a non-progressive condition. Why is it then, when I read through these posts, and have experienced it myself, we all seem to be slipping backwards in our health??? My walking has gone from normal, to a cane and my partner making sure I don't lean so far to the right I end up face planting the floor. My minor trembles have become full blown, only goodness knows what. My pain has gone from a minor inconvenience, to being afraid to leave the house without a bag full of tablets to make sure I can do what needs to be done. My memory has gone from forgetting small things, to walking into the kitchen to make a cup of coffee, and not recognizing the lay-out or where I keep the mugs. My swelling of hands and feet has gone from occasional, to constant. My ability to do anything has become so limited because I forget what I am doing and why, hence I rarely cook as I forget I am doing it, and the song of ages (the fire alarm) reminds me what I was doing. (A small list of changes I have noticed in just the last 6 months).

I know that I am not the only one, and I fear that even though my life is not shortened by this illness, it will be greatly diminished because of it. That the cane will have to become a walker, which in turn will become a wheel chair....

Is this really a condition that can be called non-progressive? Each day I wake up and have now started to wonder, what part of me is not going to do what it is supposed to when I need to call upon it???
"Life is not measured by the breaths we take, but by the moments that take our breath away."
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Re: Posing a question regarding "non-progressive" condition.

Postby ..:: lisa ::.. » Tue Nov 04, 2014 10:25 am

Hey :-D

I wonder this myself too and always at the back of my mind I think there has to be something else going on here surely!

My health has deteriorated so much over a year that I look back to the days that I thought were the worst and wish they would come back because they were easier than whats happening now.

Your thoughts on canes and rollaters echo mine, I use elbow crutches and they are causing havoc with my arms so whats the next step.....

We are given medication that causes more health problems and for me personally does nothing with leads on to more frustration and feelings of whats the point.

I dont want to believe this is progressive, it scares me to think in such a short time my health has declined so much in another 2 years where will I be?
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
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Re: Posing a question regarding "non-progressive" condition.

Postby Becs531 » Tue Nov 04, 2014 10:49 am

I'm exactly the same. I have to use elbow crutches too. Yesterday I tried to go to an appointment with just one and if my friend hadn't been with me and allowed me to lean on her, I would have fallen over. I am so forgetful now that I actually forget things I've said 10 minutes ago! I cannot keep track in a conversation without reminders of what has been said! Today even my skin and hair seem to hurt! I'm 44, what happens to me now? I feel like the medical system has given up on me... I have physio etc but it doesn't help.
Sorry...I didn't mean to sound like I'm moaning. I just feel I can say it all here...and be understood xx
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Re: Posing a question regarding "non-progressive" condition.

Postby Cjalex » Tue Nov 04, 2014 10:57 am

I went for a meeting yesterday to do with my work focused esa and the lady looked up on her computer and it says that fibro is a progressive illness x ???
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Re: Posing a question regarding "non-progressive" condition.

Postby goldie » Tue Nov 04, 2014 11:02 am

This illness must be progressive - three years ago I did not have some of the symptoms of Fibro - I now have them my good days are now becoming less frequent.
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Re: Posing a question regarding "non-progressive" condition.

Postby Welshmammy » Tue Nov 04, 2014 11:21 am

This post rings so true. I am now a partial wheelchair user, and have to use stair lifts in my home, my mobility degraded over a 3 year period. It took me years for anyone to take notice when I started to complain of severe brain fog and pain, to the point I had to seek a private diagnosis before the NHS would take notice of me. Prior to that I had suffered attitude that my difficulties were due to depression, as a result the illness was functional. I even saw a private psychiatrist once, he said my feelings were clearly down to my physical illness and wasted muscles would not be considered functional. I saw an NHS rheumatologist who took my symptoms and gave me details of a rheumatoid arthritis website and referred me to an intensive rehab clinic at my local hospital and discharged me. The intensive rehab clinic refused to take me due to the numbness in my left foot and the muscle atrophy in my left calf. Not one doctor has taken any notice of the facts, my left calf had wasted to almost half the size of my right and I lost so much weight I'm wearing children's clothes. I spend most days in bed unable to move, I can't remember the last time I left my home. Will it get even worse? Going on the decline over the last three years, I don't hold out much hope it will get better. But that's ok - the NHS discharged me.
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Re: Posing a question regarding "non-progressive" condition.

Postby aziriphale » Tue Nov 04, 2014 12:22 pm

I certainly seems progressive to me, 18 months ago my bad days were few and far between now its the otherway round
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Re: Posing a question regarding "non-progressive" condition.

Postby FluppyPuffy » Tue Nov 04, 2014 2:40 pm

This question is something that pops up quite often, and when we look back over the time we have been living with FM, there's no doubt that things do, and have changed. So whilst FM is a constantly changing problem, it doesn't fall into the category of being progressive because, unlike something such as Arthritis, it doesn't cause damage to the body, such as affecting and changing the shape of joints.
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Re: Posing a question regarding "non-progressive" condition.

Postby Paisleyjane » Tue Nov 04, 2014 2:43 pm

Hi everyone, i am so glad its not only me( not literally).
I too have got worse over the last year. Walking stick for couple of years, now use wheelchair mostly when out, its the only way to enjoy doing anything. Even the do something for 10 minutes is difficult most days. I keep thinking, try get on with it. Putting couple things in the cupboard and I need to sit down. I am glad of this forum, its very isolating isn't it?
Have a good day, gentle hugs x :sleep:
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Re: Posing a question regarding "non-progressive" condition.

Postby Queenie_70 » Tue Nov 04, 2014 3:01 pm

FluffyPuffy,

I understand what you are saying, but that is degenerative.....What I am saying is that we are progressive, as in, the condition does get worse with time, symptoms do get added to the list, and the overall condition moves forward and does not stagnate.

Arthritis is degenerative, I agree with that, is progresses by causing damage to the joints, but Fibro is progressive as we become less and less able bodied. Plus I would go out on a limb and even say that our muscles do degenerate, as the pain increases our activity decreases so our muscles atrophy...
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Re: Posing a question regarding "non-progressive" condition.

Postby Paisleyjane » Tue Nov 04, 2014 3:08 pm

I agree, fluffypuppy. I don't care about using the wheelchair its the only way I manage, so what? I don't understand the opposition, I know its more than annoying having fibro, but I can't change it. It isn't going to stop me altogether though.
I am more selfish in my attitude, I need quiet times and days in bed just to cope. I may not like what this illness is doing, but I aren't going to keep apologising for it. Just realised that, :idea: its my best friends birthday and will not be going out for meal tonight. I am sure she is miffed and feels I am being awkward, or difficult. I keep thinking, she should understand, she knows better than anyone what I have gone through, but somehow still doesn't seem to understand. :pull-hair:
Concerned about my own birthday in couple weeks ,the family have planned nights out. Have to plan to manage them.
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Re: Posing a question regarding "non-progressive" condition.

Postby FluppyPuffy » Tue Nov 04, 2014 6:01 pm

Queenie, that is the official explanation I have been given by various bods in the medical fraternity over the 14+ years I've been living with/battling with Kevin {my purple FibroMinion. I don't agree with it as I know how much I have changed and have become limited and restricted in what I can do. When speaking with medical peoples about what they actually think themselves, they too question why it isn't included in the progressive/degenerative classifications with how they have seen patients change and become increasingly affected by so many elements of the condition.

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Re: Posing a question regarding "non-progressive" condition.

Postby FluppyPuffy » Tue Nov 04, 2014 6:19 pm

I think the Gremlins have eaten part of my post Paisleyjane, as the part you're referring too is AWOL. It was were I said something along the lines of, as well as the negative changes, there have also been some positive ones too, including becoming less concerned about what others might be thinking about me, and concentrating on 'the now' and today rather than worrying constantly about what might happen at some point in the future as such things haven't happened yet and may not happen st all, or in the way we imagined.

I know reaching this sort of point takes time, and can be frustrating and soul destroying as you head towards it, but once it is reached, it just makes that little bit of extra difference to how we can live with our Kevins or however else you may refer to FM and it's cohorts.

Every once in a while, a dog enters your life and changes everything xx
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.

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Re: Posing a question regarding "non-progressive" condition.

Postby Queenie_70 » Tue Nov 04, 2014 6:41 pm

Thanks for the clarification Fluffy. It doesn't make sense, but then again, they still cannot decide what causes most headaches, so I guess we will let the medical field fight it out amongst themselves, but we will wage our war with them and see if we can get it added to the ICD 12 when it comes out.

I am positive most days. Since my incident with my doctor has knocked me back physically I literally stop and smell the roses. Even if they are in someones yard, if I can lean over and smell a flower, I'm there. I take every wrong turn as an adventure, not a mistake, and I hug sna play with my dogs till they get sick of me and run away!!!!

Today, I have slept from 0400-0650, 0900-1000, and 1400-1714. This is a bad day for me as I know I will also sleep tonight....I am the person that woke up with the morning chorus, went to work for ten hours, studied for my masters, cooked dinner, played with the dogs, helped my kids with their homework, watched a three hour movie and the still had time to sleep enough to get up with the dawn chorus. Not enough hours in the day now to sleep and get anything done. :(
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Re: Posing a question regarding "non-progressive" condition.

Postby Theresa34 » Tue Nov 04, 2014 8:27 pm

I'm so sorry its getting worse for you x I was diagnosed in Feb this year, full blown symptoms starting in Jan this year. I would say that I am managing better each month. I still have stiffness, pain, days with flares etc. But I am having more good days than bad. I'm trying to keep as active as I possibly can. I'm trying to build some strength in my muscles and make myself as flexible as possible in order to keep strong. There is no way I am going to let this thing run my life. It scares me when I stop to think about what could happen in the future :(
I am a fibro fighter not a fibro sufferer. I will keep fighting from the minute I get up til the minute I go to bed.
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