hiya

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hiya

Postby dazzleship » Sun Jun 22, 2014 8:28 am

hiya everyone

well I've been reading these forums a little bit on and off for a while now, but felt it was time to join. sorry in advance for what will no doubt be a longish post - I have a tendency to ramble :-?

I was diagnosed Fibromyalgia two years ago when I was 38. I'd been suffering random pains in various parts of my body for several months. GP sent me to rhumatologist who did the tender point test and straight away confirmed Fibromyalgia (and then phoned for a builder to fix the roof I'd hit when he pressed the tender points :-D )

at that time I was still able to walk fairly well, didn't really get tired much, it was mostly the pains bothering me.

I was going to describe my steady descent over the last two years, but it seemed too long-winded. so let's cut to now.

here I am, 40 years old, and I now use two crutches. at work. going shopping. just about anywhere. I get uncontrollable bouts of what I call "my battery has gone flat" where I just cannot do anything for the overwhelming fatigue. I get confused, I forget words, I get stupid cramps that make my big toe stick up and my leg hurt like crazy.

I get confused moments - times when I really just don't know what I'm doing. if I get stressed I get anxious and then it's like I can't make decisions, can't decide what to do, I just get panicky. I hate that.

oh, and I have hypermobile joints. physiotherapist did a test and said I scored 8 out of 9 (left arm let me down on the last point ;-) ) my joints hurt, really deep, gnawing aches that can bring me to tears. but GP says I don't have hypermobility syndrome. I'm not sure about that.. but maybe that's for another thread.

I don't take medication except one co-codamol when I really need to. tried the “usual” things - amitriptyline / noratriplyline (made mouth too dry, didn't help anyway), pregablin (turned me into a zombie for a week - never going near that again). allergic to aspirin/ibuprofen so can't take that. so I use a Tens machine, it helps, and frankly I'd rather know that everything I'm suffering is the Fibro and not side effects from medication, I can't cope with extra things.

now I'm at a really difficult point. since the diagnosis I've kept on thinking that “maybe I'm not really ill, maybe it's just a temporary thing.” and then bam, another flare up that always seems worst than the last one. not sure why GP says this thing isn't progressive.

anyway, I've come on here because I really, really, need to learn to accept this. I feel like I've hit a wall where I'm never going to be able to just move on with my life unless I can accept that I have this awful thing called Fibro. I don't know who else to turn to - work is very understanding and I am truly lucky to have a wonderful husband who helps me and is supportive. but for his sake as much as mine I need to get used to this, if that makes sense, and accept it.

I had a bad experience of travelling last weekend that has really brought things home to me that I'm not the same as I was before, can't just do things like I could in the past. it's the first time that has happened to me and I'm really struggling to get past it.

so.. I'm hoping some of you here will be able to help me with how to accept this (if that's not too much to ask?) and maybe, in turn, eventually my experiences can help someone else.

really really sorry for how long this post is. :-|
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Re: hiya

Postby FluppyPuffy » Sun Jun 22, 2014 4:28 pm

:welcome: to our little FibroFamily Dazzleship :cow-wave: :cow-wave: :cow-wave:

First of all, there is no need to apologise for how long a post may be. Most of us have had times where we have had so much that we want/need to get that seems like there is no end to what we're trying to get down. And as for rambling.....well, you're definitely in the right place for meeting like~minded peoples :bear-dancing: :bear-dancing: :bear-dancing:

Anyhows, it's nice to be able to put a name to another reader that has previously been a Guest visitor.

When a GP/Doc says that FM isn't progressive, they look at it from the same point of view that they have for conditions such as Arthritis, RA which cause damage to joints, bones etc. With FM, this joint damage etc doesn't tend to occur, so it it regarded as non~progressive. However, when you have a look around the forum, and other similar sites, forums, pages etc and read what members have posted over a period of time, with what they say and how it seems to be said, there is an awful lot of anecdotal evidence which shows that FM has changed in various ways for pretty much everyone, and sadly these changes seem to be more towards the getting worse end of the scale rather than the improving end.

Learning to accept that FM is now a part of the mix can be quite a bumpy, altho absolutely necessary road to travel, but it is possible to find your way there. It takes time, and shortcuts don't exist unfortunately. But it is possible, and you get closer to it, you find that things start slipping into place, usually with a little less negative effect on you.

There are a number of ways that people have tried and found to be effective in helping them reach that more comfortable point with their condition and what it has changed in their lives.

Keeping as positive as you can about things could be a good point to start. At times it may seem that there is only swirling blackness and an overwhelming sense of desolation, even desperation. Even in this bleakness tho, there will be little glimmers that can help keep you going. Something that you have achieved thru the day, or seen that made you smile, an unexpected recall of a pleasant memory, everything and anything that helps lift you in some way is a good place to start building from. From these foundations, you then tend to find that those glimmers start to appear a little more often and become a little brighter each time, until you reach a point where you are looking for them far more frequently/regularly and they are helping clear some of that blackness with the lighter, brighter side.

Learning about FM, and more specifically about how you are affected by it can help. Spotting potential triggers, and having plans in place to help manage things should a trigger actually go off and things flare~up can be useful. Knowing how long you are able to do something for, how long you need to rest between tasks all go towards helping you live with the condition rather than trying to battle or ignore it and carry on as you used to previously. Pain Clinics and/or other depts that deal with FM often run sessions/courses to help with this kind of thing, so as well as having some help/guidance to find your way thru this particular part of the journey, meeting others who are in their version of what you are experiencing can be beneficial, and could even lead to the building of a new friendship.

Letting those frustrations and pent~up thoughts out can be far better that keeping them bottled up, esp with others who understand what you are going thru. Forums, such as here, can help with doing that, as can attending a local support group.

Not being stubborn, or afraid or :oops: :oops: :oops: :oops: to ask for help when it is needed makes a difference. A lot of us seem to share a few traits/characteristics, such as being the one who always sorted things out for everyone else when they went wrong. Now tho, we often find ourselves needing some of that help, but with the type of people we are, asking for it can be a real nightmare, esp the first time. But the more you do it, the easier it becomes, and the more benefit it can make, even rippling out into other areas and helping make them that little bit easier to deal with.

Try not to dwell too much on how things were pre~FM and compare them to how you are now. All this will do is start bringing back the blackness, which will be desperate to get another, even tighter hold over you. At this moment in time, the chances of going back to how we were pre~FM are very slim, so focus needs to be turned onto "living in the now". Doglets can be wonderful teachers when it comes to this, as it's how they seem live. No wishing things were how they used to be, no wondering about what could be happening in a couple of weeks time. Instead, just looking forward to where the next treat, meal or walkies will be happening :dogrun1:

As well as these things, and other steps you find yourself needing to take, the main thing is to learn to love yourself, warts, FM and all. If we can't see something :bear-dancing: :blowkiss: about ourselves, then how can we expect others to do so. Knowing that there is still the essence that makes you who you are inside you means that FM doesn't have the upper hand. And whilst there may not be complete peace between you and FM, it will mean that you are living life in the best way you possibly can with a chronic illness added to the mix :cow-wave: :cow-wave: :cow-wave: :cow-wave: :cow-wave:
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: hiya

Postby denys » Sun Jun 22, 2014 6:24 pm

Hi Dazzleship and :welcome: to the forum :cow-wave: :cow-wave:
Denys

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: hiya

Postby dazzleship » Wed Jun 25, 2014 1:32 pm

Hi FluppyPuffy and Denys nice to meet you :cow-wave:

FluppyPuffy, thank you so much for your kind and thoughtful reply, I read it out to my husband and whilst doing so I was almost in tears at the kindness shown to me so soon after I joined.

What you've said has given me lots to think about - and it really struck a chord about being the ones who sorted things out before we became ill. Before Fibro hit I prided myself on being the one who always remembered appointments, phone numbers, anything and everything that needed to be remembered, I could remember it. Now my memory is quite frankly rubbish a lot of the time and its one of the things I've really found hard to accept because I can see that difference in me.

Also what you said about asking for help - I have to admit I'm terrible for that. I feel guilty about the thought of others doing things for me and so I try not to ask. With my husband it's easier because he knows when I'm not 'right' and he'll make me rest while he does things (doesn't stop me feeling guilty though). But at work - well, people in my office know that I'm ill (and can see the crutches) and I think they are willing to help, I just don't let them most of the time. I won't give away that, for instance right now (I'm on my lunch here at work whilst I type this) I'm in quite a bit of pain. Because I don't want them to know. I don't want to have to ask someone please could you get something from the printer for me. They're not my slaves, I shouldn't get them to do things. So I struggle on as best I can.

I'm probably a lost cause. :sheep: <-- just noticed that smilie so I just had to use it.

Oh, and Denys - your avatar dog looks like one of me and hubby's dogs! Every time I've come on here reading stuff (like before I joined) whenever I've seen one of your posts I keep thinking why is my dog on that picture :-D
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