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The UKFibromyalgia Forums • View topic - Hello! Hoping to be able to talk about this to others!



Hello! Hoping to be able to talk about this to others!

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Hello! Hoping to be able to talk about this to others!

Postby JessL » Mon Feb 25, 2013 9:16 pm

Hi guys,

Just a quick one to say hello!

I have just had an appointment with the rheumatologist who has said that he thinks it is FM but he is going to do some more blood tests to rule out anything else. I also had a chest x ray the other day which he requested (not sure why though?). I have had the tiredness and muscle pains for the last 3 years, and to begin with they said I had M.E - I wasnt convinced of this so had a bit of an overhaul in terms of diet, setting little life goals to get etc which really helped. Then about 18 months ago the pains got much worse and seem to be steadily getting worse as time goes on. I help look after 2 horses and used to ride anything up to 7 times a week - this is now down to 2 or 3 and I find it a real struggle sometimes. I am determined not to give up completely though, and just do what I can. Horse riding is such an important part of my life!! I also do Pilates which is also steadily getting harder to complete the same/similar exercises each week, despite going for over 2 years.

I am not one to talk about how I am feeling to my family or my boyfriend (of 5 years who I have lived with for 2), so they don't really have any idea how I feel (other than the generic 'I'm tired' and 'I'm struggling to do this because of lack of concentration/muscle pain etc'. My Nan and Grandad were both diagnosed with cancer last year (my nan was diagnosed after nearly bleeding to death), so I look at them and then look at myself and kind of feel like I don't really want to talk about how I am feeling because they are going through dealing with cancer!

Looking forward to actually (maybe, if I can get myself to open up and actually talk about it!) talking to other people who are going through something similar. Sorry for the essay!

Jess x
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Re: Hello! Hoping to be able to talk about this to others!

Postby Pinkprincess205 » Mon Feb 25, 2013 10:08 pm

Hi Jess
Welcome to the board.
I was having tests for over a yearbefore fibro was even mentioned, i had bloods, xrays, ct, mri, nerve testin to rule everything else out and then he said its fibro.
This site is great you find so much info out about fibro and its good to talk to others that feel the same. It is hard for others to understand. Im sorry to hear about your grandparents, and i know you dont want to talk about your fibro to them as they are dealing with cancer, but im sure they would still care and want to know your suffering, it must be hard.
I hope you get a diagnosis soon.
Victoria x
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Re: Hello! Hoping to be able to talk about this to others!

Postby jo_jo789uk » Tue Feb 26, 2013 1:54 pm

Hi Jess,

I understand the difficulties of getting a Fibro diagnosis first of all.

I have had pain since I was 16 years old. Unfortunately, it has taken until last week (now 22 years old!) for a GP to refer me to a rheumatologist. Ive had numerous blood tests, of which I have more this week. I've had xrays, MRI's and physio.

I'm living with my fiance at the moment. Unfortunately he lost his job two years ago and with the job market being what it is, he hasn't been able to find a permanent job since. That means I have to work full time in order to pay the bills. I struggle to talk to him about how I am feeling with Fibro because I don't want him to feel any more pressure, considering it isn't his fault he can't get a job right now.

My mum is disabled and my dad is her carer. They are struggling financially because their benefits have been cut. I feel silly telling them that I'm not well when they are going through so much themselves.

It can be difficult talking about Fibro, but that's why I've found it good to come on here. No-one knows your friends and family, so you can talk freely and you don't get judged because everyone is going through the same thing.

I hope you find what you're looking for here :)
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Re: Hello! Hoping to be able to talk about this to others!

Postby FluppyPuffy » Tue Feb 26, 2013 2:28 pm

:wave: :wave: Jess and :welcome: to our little FibroSanctuary :bear-dancing: :bear-dancing:

I'm sorry to hear what you've been going thru and how long it has taken for you to get to the point where a possible dx has been considered :( :( :( Sadly, it's not an unusual story either :( :( :( I hope it won't be too long for all your results to come thru and you finally get that definitive name for your various problems and symptoms :fingerscrossed: :fingerscrossed: :fingerscrossed:

Being able to open up and talk about things is beneficial, but for a lot of us, a very difficult thing to do, so you're in good company here. Even now, altho I'm far better at it than I was, it's still something that I find hard to do. On here tho, it is that bit easier to let things out and jo_jo has summed it up perfectly.....we all understand what we are each going thru as we are or have experienced the same sort of thing at some point along the way.

Hopefully, as you find your way around the boards, you'll find yourself letting a little more out. And as you get to know us, we'll be able to offer you the advice and help and support that we try to give each other :bear-dancing: :bear-dancing: :bear-dancing:


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Re: Hello! Hoping to be able to talk about this to others!

Postby Iceskatemum » Tue Feb 26, 2013 3:41 pm

Hi Jess ,So sorry to hear that you are going through such a rough time but just remember you are not alone when you have the folk on here to help.

I think you have hit on one of the hardest things to do when you have Fibro, at least for me. I have great difficulty talking to my OH, my sister & my children about how I am feeling both physically and emotionally.

However all the lovely folk on here have been brilliant about offering support & advice when ever I feel down ( which at the moment seems to be all the time) There is always someone who has experienced the very thing that is worrying you and so can offer a shoulder to cry on or direct you towards a solution if that is possible.

I'm sorry that you have been dx with FM but you couldn't have found a better place to learn about it , share your worries and your nice times too we hope. Its not all doom & gloom as FP says there is a certain touch of :crazy: around as well .

Have a look at some of the boards , as a newbie you might find the following boards useful .......FM Stages of grief , The spoon theory . preview ;symptoms of FM but don't dismiss some of the older threads as I have found them very good when I need a question answered and its so easy to do .......you just enter your subject matter in the search box at the top of the page and away you go.

take care :hugs: :hugs:
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Re: Hello! Hoping to be able to talk about this to others!

Postby JessL » Tue Feb 26, 2013 5:49 pm

Thank you so much for you replies, it is really good to know that there are people out there who I can talk to and who understand. I feel a bit happier just getting that first post off my chest!! I am going to do what you suggested Iceskatemum, and spend some time reading around the posts/threads on here. Thank you again :-)
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Re: Hello! Hoping to be able to talk about this to others!

Postby shazq » Tue Feb 26, 2013 6:00 pm

Hi Jess :welcome: to the forum :wave:

Sorry to hear you are having a rough time :( there is lots of info and support on here so hopefully you wont feel alone during you battle with fibro. :wave:
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Re: Hello! Hoping to be able to talk about this to others!

Postby Flaw » Wed Feb 27, 2013 6:00 pm

Hi Jess!

Sorry to hear about your diagnosis but hopefully that can start a road to pain management! I also have a horse (well, he's my mums now as its too much work for me) and haven't ridden since September. The cold set in and I flare too badly in the winter to even manage a plod! I know what it's like to miss out on doing something that is so much a part of you.

Here's to the summer when pain seems easier to manage and to getting our bums in the saddle as often as possible :)
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Re: Hello! Hoping to be able to talk about this to others!

Postby JessL » Wed Feb 27, 2013 9:19 pm

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Re: Hello! Hoping to be able to talk about this to others!

Postby maxtomads » Wed Feb 27, 2013 10:08 pm

I have horses too, but sadly haven't ridden for well over a year due to fibro. I tried a couple of weeks ago & managed a few yards before I had to get off :cry: I used to ride over 100 miles a week - endurance rides with egb and training rides - but now even a few yards is too much :cry:
They are so wonderful, I really don't want to have to find new homes for them.
This illness robs us of everything :cry:

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Re: Hello! Hoping to be able to talk about this to others!

Postby Flaw » Thu Feb 28, 2013 1:22 am

I see him a few times a week- it's been so cold I've avoided being outside as I tend to pick up a cold in a second and it really hurts my body! He's quite strong in winter, he would use all my strength. I gave up for the winter in swptember as the last time i rode he yanked my arms so much i was in agony. Last summer I felt quite well and was able to ride a few times a week. It'll be nice when it's boiling and he's stuffed with grass :D

I think horses are so good for the soul! It's true, just giving them their dinner is a joy. Nothing beats the smell of horses :)
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Re: Hello! Hoping to be able to talk about this to others!

Postby JessL » Thu Feb 28, 2013 1:33 pm

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Re: Hello! Hoping to be able to talk about this to others!

Postby Flaw » Fri Mar 01, 2013 1:48 am

There's lovely hacking where I am but you have to do some busy road work and the occasional fly over to get there. I don't mind though as it's nice for warming up and cooling down. : D my boy really is a gem and looks after me, even if sometimes he does pull my arms when he suddenly decides he absolutely must grab as many mouthfuls of cow parsley as possible. He lives out in the summer too- greedy cob.

What are your horses like?
I'td be horrible not to go down the yard, it's where I get most of my socialisation!
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Re: Hello! Hoping to be able to talk about this to others!

Postby JessL » Fri Mar 01, 2013 5:44 pm

They aren't actually mine - I have helped to look after them for a few years. The lady who owns them runs a pub and so it is a perfect situation really - I get to go down as much as I like, and not have the responsibility of having to worry about if I can't get down there if ill. They have their own stable yard and it is about a 15 minute walk from me, or a 2 minute drive. Is yours nearby?

One of them is a cob too - she is very grumpy and moody, apart from when she is working and then she has a personality transplant!! She is strong, but we have just changed her bit so she doesn't pull anywhere near as much now which helps me no end. The other is a New Forest - the sweetest boy ever. He however is scared of the sillyest things and is certain he is going to fall down every drain we come across!!
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Re: Hello! Hoping to be able to talk about this to others!

Postby maxtomads » Fri Mar 01, 2013 6:07 pm

I have 2 horses, one of them a 17'3 shire cross, the other a 16hh cob. We're on the edge of the peak district so the riding is amazing. My shire-x is a real gentle giant, and as bomb proof as they come - I could ride him down the hard shoulder of the M1 & he wouldn't turn a hair. I've not been able to ride for over a year now (used to do 100mls a week on him without any problems on endurance rides and in the hills). I still go up every day though. They live out from mid march to december (depending on weather) and I love going sitting on the hill with them. I used to walk up with the dogs (it's an 11 acre hillside field) and just sit & chill out even in the rain while the horses grazed around me, and the dogs sniffed out rabbits & all sorts of things. These days I drive up in my landy as I can't manage the walk. I don't know what I'd do without the dogs or horses - they're the only things that keep me sane in a life that's gone haywire

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