Most ridiculous thing you've heard about Fibro...

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

Re: Most ridiculous thing you've heard about Fibro...

Postby rich44 » Wed Aug 27, 2014 7:17 pm

There's possibly an element of truth to both statements but as usual life isn't quite as simple as that
rich44
UKFM Member
 
Posts: 389
Joined: Sun Nov 03, 2013 9:13 pm

Re: Most ridiculous thing you've heard about Fibro...

Postby Butterfly8588 » Wed Aug 27, 2014 9:04 pm

mimildred wrote:I have been recently diagnosed with FMS. My Consultant Rheumatologist told me that if I get the pain under control, I can do lots of exercise and get my strength back. My GP has told me if I sleep properly I will be OK. Having read these posts, I am starting to get the impression that these are both a load of rubbish? Could I have some honest answers / opinions please? Do I continue to live in hope of recovering, or should I start getting used to life like this?!


Hiya mildred,
It's really hard to predict whether someone will improve cos it varies so much. My personal opinion, and please don't take this as gospel, but if you can solve your sleep issues and control your pain then you've managed to solve two of the most troublesome problems we have and please let me know the answer!
In my experience I've learnt to try and live with my problems and its something we all have had to. Have you had your symptoms long?

Take care xxx
I'm the ghost of a girl that I want to be most, I'm the shell of a girl that I used to know well.
Butterfly8588
UKFM Member
 
Posts: 148
Joined: Tue Jun 07, 2011 2:37 am

Re: Most ridiculous thing you've heard about Fibro...

Postby Zia2014 » Sun Aug 31, 2014 3:54 pm

mimildred wrote:I have been recently diagnosed with FMS. My Consultant Rheumatologist told me that if I get the pain under control, I can do lots of exercise and get my strength back. My GP has told me if I sleep properly I will be OK. Having read these posts, I am starting to get the impression that these are both a load of rubbish? Could I have some honest answers / opinions please? Do I continue to live in hope of recovering, or should I start getting used to life like this?!


This has struck a cord with me. I really wish I knew. Some people, including my partner is quite intelligent, seem convinced I am going to "get better" once I've been diagnosed. My partner thinks we should hold off on planning a holiday until such time. His family said to me just recently that they would take me out "when I'm better".

Whereas I'm seeing it as it will possibly get worse, so I want to do things now like going on holiday because if I believe it might get worse, and it doesn't, I'll be happier than if I think this is as bad as it gets. And having read other people's stories, I doubt this is the worse it will be. I can work (albeit part time), get out most weekends, I drive, and although I'm not sleeping I seem to be functioning still.

I really don't see my diagnosis as the solution, as people around me seem to. I assume it's the start of a long road, and that road will have many ups and downs on the way.
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: Most ridiculous thing you've heard about Fibro...

Postby SchroedingersCat » Mon Sep 01, 2014 12:54 pm

I don't know if it's any comfort, but I work full time and have a very active social life, as well as being a keen gardener, I've moved house this year, I have 3 cats and a dog....I've had this stupid illness for the last few years but still manage to live a fairly normal life, so don't give up hope, especially if, like me, you don't have any other conditions to make things worse, things could get better rather than worse.
SchroedingersCat
UKFM Member
 
Posts: 435
Joined: Mon Mar 19, 2012 8:11 pm

Re: Most ridiculous thing you've heard about Fibro...

Postby Zia2014 » Wed Sep 03, 2014 10:50 am

That is a comfort SC! How do you manage, are you on painkillers? Do you get tired? Sorry for all the questions but I feel so wiped out it's hard to believe I could work full time again :(
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: Most ridiculous thing you've heard about Fibro...

Postby mimildred » Sat Sep 06, 2014 7:27 pm

Thank you all. Apologies for the delay - things suddenly got worse for a few days! I think my problem is denial still at the moment. My symptoms only came on at Christmas (although some things I have had for years but never really connected them!) and it was only after being unable to get off the floor and the family panicked and called an ambulance that Fibromyalgia was mentioned. Had not heard of it until then, but nagged at my GP for a referral. Suppose I have been lucky to get the diagnosis so quickly and the chance to try and find pain relieve (with no success yet).

But I still wonder if I am imagining it and tell myself to pull myself together. Always results in bed when I realise I am not imagining it!
Mimildred
mimildred
UKFM Member
 
Posts: 18
Joined: Wed Aug 27, 2014 1:51 pm

Re: Most ridiculous thing you've heard about Fibro...

Postby kayhealey » Sun Sep 07, 2014 11:41 pm

Hmm. Great question! I was taking notes for my husband at his Gastroenterologist's. The dr. was inquiring about my husband's exercise routine which is walking the dog and my husband remarked that he can't walk him as far as Shadow wanted to go. (Shadow's a very strong Labrador Retriever) The dr. looked at me and said "What's the matter with you? You can't walk the dog?" (nasty tone) to which I replied "I have FM and most days I could no more walk Shadow than the man in the moon." He laughed (again nasty) and said "Did you know Fibromyalgia is not even a disease? It's a syndrome! A syndrome for heaven's sake! Everybody has aches and pains. Doesn't keep me from going to the gym every day. Walk your dog! You need to lose some weight!" I was speechless! I wanted first of all to kick him in a place that would really hurt and I had good positioning for it from where I was sitting and second to report him to someone very important, but my husband (Dr. KIA- know it all) likes him and thought the Dr. might take his anger out on him and his rear end.

Needless to say I don't go and take notes any more! So only diseases are painful? Syndromes are a minor nuisance I suppose. What genius came up with that system? And overweight? How rude! I'm not even his patient! And I'm not even that much overweight. He might have a tiny bit of a point there, but still very rude.
kayhealey
UKFM Member
 
Posts: 25
Joined: Sun Aug 24, 2014 5:29 am

Re: Most ridiculous thing you've heard about Fibro...

Postby Zia2014 » Mon Sep 08, 2014 4:40 pm

Charming!! I really hate it when they automatically focus on your weight or any previous mental health stuff as the answer - "oh it must be because you're fat/stressed and I can't be bothered to do any proper investigation" :roll:

If I were you Kay I'd have probably slapped him!
Zia2014
UKFM Regular
 
Posts: 1033
Joined: Sun Jun 29, 2014 2:55 pm

Re: Most ridiculous thing you've heard about Fibro...

Postby rich44 » Mon Sep 08, 2014 6:54 pm

My wife had that when pregnant with our eldest, she's not skinny and got a lot of lip of the gestational diabetes consultant.
Then she weighed her and said oh let's see what your booking in weight was (dripping in sarcasm) her booking in weight was the same weight as at 25 weeks and stayed the same all the way thru till delivery at 38 weeks so in effect she was losing weight all the way thru the pregnancy.

The crestfallen look on this consultants face was priceless after her smug crowing the old cow.
rich44
UKFM Member
 
Posts: 389
Joined: Sun Nov 03, 2013 9:13 pm

Re: Most ridiculous thing you've heard about Fibro...

Postby magicknuts » Tue Sep 09, 2014 6:53 pm

Hi Mimildred,

I am newly diagnosed myself and have a lot of the same questions and hopes and fears atm. I am currently off work and recent attempts at things - such as a bus journey to the bank have worried me considerably as to my ability to go back any time soon.

As to the what people have said - the rheumatoligist who diagnosed me after saying there is no inflamation and fibromyalgia causes no damage -it's all in your head. did go on to explain that it is central nervous system/brain going awry - so I guess we can let him off with that one, I didn't have the heart to tell him I had read up on fibromyalgia before going to see him so knew this already, bless him.

But I had a great one off my partner the other night, I arranged for us to go for a short walk in the country to a place we had both been (seperately) as kids and invited my aunty and his parents to join us (a great way to get the families to meet before our impending wedding in a years time) it ended up being more than I could handle with the journey there and back and a far too long walk for my legs and back (I keep over doing it not knowing my limits - I will learn I suppose).
When we got home I was in agony esp my back- the worst pain I have had since finishing and recovering from work must be 2 months ago now, so I said "I understand how your dad must feel but on a much lesser scale" (his dad suffers severe chronic back pain to which he replied "my dad has bad pain not niggling aches"

I could have punched him, if I had the energy, the strength and there would have been no point as i would hurt me and he wouldn't feel it at all. But he was in the dog house for that one. I am now forcing him to read more on fibromyalgia because it doesn't matter what I say he just doesn't seem to understand.

He will learn. I just was flabbergasted as a few days earlier I had been in absolute tears over the relentless aches and pains and exhaustion. ah well. I am sure I can get by with my niggling aches!

but some of your stories I am so shocked by.

In all fairness I had never heard of Fibro until I started looking into the symptoms I had, but I just don't understand peoples responses.

Hope you are all having good days

xx
magicknuts
UKFM Newbie
 
Posts: 9
Joined: Thu Jul 24, 2014 8:00 am

Re: Most ridiculous thing you've heard about Fibro...

Postby mimildred » Thu Sep 11, 2014 1:12 pm

Hi Magicknuts

I think your story will ring true with all of us - learning what you can and can't do is not easy. I too have had to learn the hard way!

But I know what you mean by your fella - mine looks at me sometimes when I can hardly walk/move my arms/cry in pain and says 'is it really that bad?'. I just want to scream at him that he has absolutely no idea! He did a bit of research when the word was first batted around but is really not interested in things I have given him to read which I thought may explain it better. I too have considered throwing a punch but refrained for the same reasons you mentioned!

Hope you soon get the hang of it. I read something on here from someone which was very inspirational - think of the things you can do rather than dwell on the things you can't do. You have to be in a strong mindset to do it, but it does work!

Take care.

Miriam
xx
Mimildred
mimildred
UKFM Member
 
Posts: 18
Joined: Wed Aug 27, 2014 1:51 pm

Previous

Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 9 guests