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The UKFibromyalgia Forums • View topic - Introduce yourself ((xx))



Introduce yourself ((xx))

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

Moderators: perseus, *Lisa*, FluppyPuffy

Re: Introduce yourself ((xx))

Postby Itsonlyme! » Fri Mar 09, 2012 12:01 am

Hi guys, hope you all having a better and brighter one today, it is a massive shame that we all meet/speak under such circumstances, but nice to know you're there, someone who bloody understands at last!!
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Re: Introduce yourself ((xx))

Postby Itsonlyme! » Sat Mar 10, 2012 1:28 am

Just wanted to say Hi guys to all the newbies like me, I know first hand it takes a lot of courage to join something like this and discuss FM and all its associated nasties with faceless strangers but my ideal is I'd like to think we're all in it together,which we are, am sorry for the guys that have waited so long,too long, like me, to be diagnosed and get any sort of answers, I do tons of research on Fibro so if you don't have the time or feel up to it please feel free to give me a shout, (it keeps my brain active).:-)
All our stories i'm sure are so very different in many ways but also strangely very similar at the same time, I lost my job/career almost exactly 2 years ago and it felt like my world had ended, it's been a very rocky road since, my kids suffer, my family suffer, not just me, Am sure most of you have been on that road already and maybe like me, still are, and some of you are just about to embark on your own Fibro journey, it's tough, it's bloody hard, but it's part of my make up now and yours, it is who I am/we are, I'm past wishing I was someone else (most days :-(), and I'm proud now, very proud, to take on this "monster" head on, and you should be too, this is the first step to tomorrow and the day after and the day after that, take it one day at a time is the only advice I can give to you right now, so "welcome" and if anyone wants or needs to get in touch I'm here as I hope you might be there for me, FM is a horrid ugly thing that "most" people I feel, no matter how hard they try or indeed dont try just "don't" "cant" or "won't" understand, same s***, just a different day!!
I tell myself every morning when I look in the mirror at the sad tired pasty face staring back at me...This will not kill me!!,I am a Tiger!!, (just kidding I dont really say that bit), I take my many Meds and then try get my little ones up (only 4 and 7) so I can watch them be happy, this makes me happy and that's just enough for me right now, I choose now to try and focus on what's good in my life, it just makes things slightly more bearable.
It definately won't happen overnight but trust me, it will happen, my very best wishes
Maria :-)
Xx
(Itsonlyme!)!
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Re: Introduce yourself ((xx))

Postby dalhousie » Sun Mar 11, 2012 7:41 pm

Hi - My name is Ruth. For 2 years I've been wrongly diagnosed with back pain due to facet issues. The pain is all in my muscles & a 2nd opinion has diagnosed MYOFASCIAL PAIN SYNDROME (MPS). After looking on the net this fits much better with my symptoms & history of the problem. Unfortunately it's got chronic after 2 years. I saw this on one site:

"The prognosis for the resolution of myofascial pain is good if treatment is started in the acute phase and aggravating factors are eliminated. Treatment becomes more difficult as chronicity increases".

Feeling stressed & worried about how I'm going to get out of this mess & get more active. So sick of having to take rest periods on my bed as much as I do. I can't work at present. I do go out for a walk each day 4550 steps which is just under 2 miles. I take an NSAID Celebrex once a day - I have IBS so find tolerating ANY NSAID's very difficult, Dihydrocodeine, Pregabalin (low dose only, due to side effects) & Amitriptyline at night

Am I in the right place on this forum? I can't find any dedicated MPS forums. FM is has some similarities to MPS but is not quite the same.

I'm having a Bowen therapy session on Monday as I heard this can help with fascia. Is acupuncture/gentle massage likely to be helpful with this.

Any help/advice would be greatly appreciated.

Thanks.
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Re: Introduce yourself ((xx))

Postby shazq » Sun Mar 11, 2012 7:55 pm

:welcome: to the forum dalhousie :wave:

:goodluck1: with the Bowen therapy hope it helps.

with things like acupuncture/gentle massage its hard to say whether they will benefit you or not until you try them, everybody reacts differently to them, some people will say it does help where as other say it makes there pain worse.

Its great that you are able to walk that far each day thats good exercise. :hugs:
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Re: Introduce yourself ((xx))

Postby FluppyPuffy » Sun Mar 11, 2012 9:02 pm

:welcome: to the forum Ruth :bear-dancing: :bear-dancing: You're more than welcome to come and join in with us :clap: :clap: :clap: :clap:

:goodluck2: with your Bowen session, hopefully you'll find it helps you :fingerscrossed: :fingerscrossed: The only way to find out about how helpful acupuncture/massage could be for you is to give them a go.

It's understandable that you're stressed and worried about things at the moment, it's how most of us have felt at times :facepalm: :facepalm: There will be a way out of where you are now, it just might take a while for you to find the right combination for you. Having to take breaks between doing things can be a pain at first, but when you get into the habit it can really help with doing things.

Anything you're wondering about, we'll try to help you with it :wave: :wave: Our replies may come from an FM angle, but hopefully with the similarities between both conditions you may find some ideas and advice that could help you :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin: :penguin:


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Re: Introduce yourself ((xx))

Postby dalhousie » Sun Mar 11, 2012 10:14 pm

Thanks for the warm welcome.

Are there any therapies that are beneficial to fibro? They might help with myofascial syndrome as well.

I've actually had this problem for about 10 years since I had an accident/muscle strain injury in the gym. In the past it's only bothered me when my activity level is low as it is at the moment. I've nipped in the bud in the past by using an NSAID but with my IBS I've become very intolerant to them. I can take 1 Celebrex tablet though. Why no medic suggested Celebrex when I first started being intolerant to NSAID's 2 years ago I'll never know as Celebrex is the one that's least reactive on the gut. Things have got so bad now that an NSAID is of limited relief.

Can fibro be controlled to have quality of life ? if it can then I'm hoping myofascial pain can hopefully.
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Re: Introduce yourself ((xx))

Postby Whogirl » Mon Mar 12, 2012 11:57 am

Hello

As you can probably tell Im a big fan of Doctor Who. The Fibro mainly affects my hands and until they got so bad, I was an avid cyclist too.
I love History. Im managing the pain with a variety of meds and anaesthetic patches at the moment.
This seems like a nice place. Pleased to meet you all :)
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Re: Introduce yourself ((xx))

Postby FluppyPuffy » Mon Mar 12, 2012 1:01 pm

:welcome: to the forum Whogirl :alien: :alien: :alien: :alien:

There is a lot of info and advice on here that you may find useful so have a look around and see what you can find :bear-dancing: :bear-dancing: :bear-dancing: We also try to support each other thru rubbish that likes to come along thanks to FM :penguin: :penguin: :penguin: :penguin:

Anything you want to know about, just ask and we'll try to help you with it :bear-dancing: :bear-dancing: :bear-dancing:


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Re: Introduce yourself ((xx))

Postby FluppyPuffy » Mon Mar 12, 2012 1:24 pm

:wave: :wave: Ruth

Therapies wise, there aren't specific ones used for FM, it's more a case of trying things to see what happens as the thing we have found tho is that what may help one of us may not be suitable for another :facepalm: :facepalm: :facepalm: Some on here have found massage can help them, which is also suggested for MPS, ideally using trigger~point release techniques. Physio has helped some people, usually involving gentle stretches. This may help with MPS as well, with stretches and gentle exercise possibly being helpful for trying to to recover the full range of motion and motor co~ordination. Once trigger points have been dealt with, exercise desgined to help with muscle strengthening can then start, with the long~term health of local muscle systems being supported. For others, hydrotherapy has helped, as has swimming.

It can be a case of trial and error in finding the right mix of meds, exercise/therapies, and lifestyle, for someone, however it is possible to get some control back into life with FM, so it's not unreasonable to expect to be able to do something similar with MPS :bear-dancing: :bear-dancing: :bear-dancing:


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Re: Introduce yourself ((xx))

Postby shazq » Mon Mar 12, 2012 4:22 pm

:welcome: to the forum whogirl :wave:
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Re: Introduce yourself ((xx))

Postby Whogirl » Tue Mar 13, 2012 10:06 am

Thank you for your warm welcomes :-D
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Re: Introduce yourself ((xx))

Postby paularose » Thu Mar 15, 2012 11:05 am

Hi my name's Paula, I'm 43 years old and have a 2 year old daughter.

After more than 20 years of inexplicable pain and fatigue and trips to different doctors over the years who could give me no answers I was referred to pain clinic last week. The consultant carried out the fibromyalgia test on me and has come to the conclusion that he can't give me a difinitive diagnosis of FM but will treat me for it as my symptoms are very suggestive of the condition. I found the test interesting to say the least as points that he was pressing were like butterfly touches. A smaller amount of pressure would have been painful but then maybe my condition isn't as bad as some people's which I believe must be true from reading posts on the forums. I will be meeting my GP tomorrow to start medication. I so badly need this to work as I'm struggling almost daily now, mainly due to fatigue and it's impacting on my ability to look after my daughter. I've already had to quit my PhD because I couldn't cope and I need to return to work soon which I'm dreading.

I have a couple of questions to start with but will likely have loads more ............

Do others suffer from dehydration? I drink a lot but often wake up in the night parched.

If I don't have pain in my arm and leg joints to any great degree (in fact they are the only parts of my body which don't seem to hurt as a rule) would that be strange for someone who has FM? I seem to fit a lot of the sypmtoms but if this is usual and I'm not experiencing it then I wonder if I might be misdiagnosed? I'd rather have a correct diagnosis that an incorrect one. Ironically I've just discovered that a maternal aunt has just being diagnosed by her GP (with no tests for FM) but talking to her we have similar issues.

I look forward to having communication with anyone who has this condition as I've been alone with it for sooooo long :(

Many thanks,

Hopefully...................... Paula :-)
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Re: Introduce yourself ((xx))

Postby FluppyPuffy » Thu Mar 15, 2012 4:03 pm

:welcome: to the forum Paula :bear-dancing: :bear-dancing:

You're not alone now you've found us :grouphug: :grouphug: There is a lot of advice and support on here, hopefully some of the info will help with answering any more questions you find popping into your head. If you can't find something that resembles what you're looking for tho, all you need to do is ask what it is you're wondering about and we'll try to help you with it :bear-dancing: :bear-dancing:

FM affects all so very differently, so you may not be affected by yours in the same ways or intensity as others :facepalm: :facepalm:

As far as I'm aware, dehydration isn't something related to FM. However that doesn't mean it definitely is or isn't as we all have our own version of this condition :facepalm: :facepalm: A dry mouth can be a side effect of a med, so if you have started some new meds or had a dosage increased, that could be the reason for it :-? :-? With you going to see your GP tomorrow tho, you could ask about it as it can also be a sign of other things/illnesses.

As for you not having pain in the body areas you've mentioned, you'll soon find there isn't anything usual about FM :facepalm: :facepalm: Some people can be affected in some areas of their body, and others are affected in different parts of their bodies, there is no set of rules or a plan that FM follows, instead it makes it up as it goes along :facepalm: :facepalm:

There are a few members on here who have, like you have found, that other relatives have/have had the same symptoms and problems as they do as well.


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Re: Introduce yourself ((xx))

Postby denys » Thu Mar 15, 2012 8:09 pm

Hi to all the newbies I have missed and :welcome: to the forum :wave: hopefully we can offer you some support when you need it :-D :-D
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Re: Introduce yourself ((xx))

Postby annablack » Thu Mar 15, 2012 9:31 pm

Hi, my name is Anna. I have four beautiful children aged 10, 8, 7 and 5. I have been struggling with symptoms of fibromyalgia for a few years without knowing what was going on or even knowing that the symptoms were related. I'd never heard of fibromyalgia until very recently when a nurse from the 111 service explained about it when I phoned on one of my really bad days. I also have bipolar which I suspect is why my symptoms have been ignored for so long. My children are fantastic. They are so helpful when I have bad days. I feel guilty that they have to do certain things for themselves at times. I am a single parent so I deal with meal times and the other essential things regardless of how ill I am, but the children help as much as they can without me even having to ask. Anyway, that's a little about me.
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