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The UKFibromyalgia Forums • View topic - Hi i'm new and need advice please.



Hi i'm new and need advice please.

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Hi i'm new and need advice please.

Postby whitebutterflies » Sat Jul 16, 2011 7:00 pm

Ok to start with i should say i do not suffer with fibro, but my partner was diagnosed with it last thursday. The consultant we saw was well useless. He explained it all wrong to us and made it sound like he was telling my partner it was all in his head, and not a real problem.


My partner later spoke to the fibro support people via phone and she gave him/us a better insight. But i was hoping that people here who actually live with the condition could help more.

I'd like to know what i can do to support him as a partner and try to get a better understanding of fibro.


Also advice for him as well he's not a chatty person, and generally keeps a lot to himself.


Any help or advice on this would be most appreciated. Thanks in advance everyone.
Been with my gorgeous man since 16-10-07 :)
Still trying to come to terms with his d/x of FM which was made on 14-07-11
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Re: Hi i'm new and need advice please.

Postby FluppyPuffy » Sat Jul 16, 2011 7:44 pm

:wave: whitebutterflies :welcome: to the forum to you and your OH.

There is a lot of info on here about FM so hopefully there will be useful stuff for you and your OH.

Living with someone isn't always easy I'm afraid :facepalm: :facepalm: I'm not wanting to scare you, it's just that FM is very unpredictable and it can take a while to find the right mix of things that works for each of us :facepalm: :facepalm:

You've already started trying to help your OH by wanting to find out about FM, he will have his own version and experience of it as, altho we share a range of symptoms and problems, it does affect us all very individually.

The rheumy your OH saw is sadly typical of the things a lot of us have experienced, with not being taken seriously. if it was all in our minds, then we'd be able to think ourselves better :tongueout: :tongueout: We all know it's real, just as you and your partner do.

It's a bit difficult to make suggestions as to what you can do to help your partner with how it affects us. At the moment, being there to listen to things he is worried about and provide him with some reassurance is a good thing :hugs: :hugs: Maybe suggesting that he has a look thru posts on here might be of help as well. He could find some answers to questions he has whirling round his head, plus you can ask about anything that you're both wondering about. There's usually someone around who has had a similar experience and will share what they know about it.


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Re: Hi i'm new and need advice please.

Postby whitebutterflies » Sat Jul 16, 2011 7:53 pm

fluppypuppy thank you so much for your post means a lot that some one replied. I feel useless at the moment like there's nothing i can do to help him. He's taken nearly all the medication suggested for fibro in the past and it just doesnt agree with him.

He has an appointment thought to see our gp next friday to discuss fibro more and to wee what they can offer him then. A lot of the things he has symptom wise worry me a great deal, he has chest pain all most all the time, and also problems swollowing as well as the constant pain he's in he does very little and is exhusted as you know i guess this is a common symptom.


I've done some reading about fibro and i have to say it scares the be jesus out of me, so i dread to think how he feels being the one to suffer.



I think at the minute we both feel quite lost and untill he gets help and is taken seriously i dont think either of us will settle.

I find it rather hurtful and shocking that so many people with fibro, are left or sent away by clueless consultants with a feeling of insanity pushed on them (this is how hes now made my OH feel).

Still im very glad i found this forum and i look forward to getting to know yo all on behalf of my bf :clap:

Thanks again hun means a lot x
Been with my gorgeous man since 16-10-07 :)
Still trying to come to terms with his d/x of FM which was made on 14-07-11
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Re: Hi i'm new and need advice please.

Postby FluppyPuffy » Sat Jul 16, 2011 8:10 pm

We do our best to support and help each other on here so we'll do our best to help you both thru it all. Feeling like you do at the moment is pretty usual, it's the realisation of what FM is and how it affects everything and everyone around it.

If you're going with your boyf to see the gp, that will be helpful for him, not just for moral support, but also as another pair of ears as it's so easy to forget things that have been discussed during the appt. Between now and the appt, it might be helpful for the 2 of you to make a list of you boyfs symptoms and problems and how they affect him, as well as any questions you think of. It helps with remembering what you want and need to talk about :grouphug:

Feeling lost is something we've all experienced, but there will be a way thru it, you just need to find the right path for both of you. I know you've said your OH has already tried some of the meds used for FM, but I've added this linky just in case there is something on here that might help There are sometimes alternative meds of the same kind, and one thing a lot of us have found is if one med doesn't suit us, another one might. So it might be worth asking the doc about possible alternatives to things he has already tried :fingerscrossed: :fingerscrossed:


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Re: Hi i'm new and need advice please.

Postby whitebutterflies » Sat Jul 16, 2011 8:37 pm

Again i have to say thank you for responding. So far you've offered all ready great support and i can now settle knowing we arnt the only one's to have been treated so badly by a consultant and it's pretty normal to feel the way we do.

He has quite a lot of symptoms in fact nearly all of the symptoms i have found he has.

I am going to the gp with him, we all ways go to gp appointments together as you say it seems easier with 2 people there for both support and an extra pair of ears. But more so for him as he has problems with remembering things another symptom i have learnt is part of FM.

I will do as you suggested and make a list with him about symptoms and also questions he wants to ask, we both seem to go blank when we get in the gp's room so he's not alone on that one :) .

Thanks for the link i will write some of those things down he hasnt tried and hope we can get/find something that will suit him, another problem he has is stomach ulcers so again the gp needs to be cautious with med's. I'm staying positive on the med's front and i will put my self into debt for him to find him a good gp and treatment.

love and hugs to all here you all deserve the best in care and medication to help control some of those symptoms.
Been with my gorgeous man since 16-10-07 :)
Still trying to come to terms with his d/x of FM which was made on 14-07-11
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Re: Hi i'm new and need advice please.

Postby FluppyPuffy » Sat Jul 16, 2011 8:47 pm

The forgetfulness is known as fibrofog and is a real pain, but does makes us do some very strange things. When you get chance, in Positive and Fun there are several threads about our antics when we forget things. It's always good for a laugh and makes you feel better when you realise it's not just you doing these daft things :lol: :lol: :lol:


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Re: Hi i'm new and need advice please.

Postby whitebutterflies » Sat Jul 16, 2011 8:55 pm

I will have a look there thank you for that :lol: He's little touchy about the subject at the moment hate's that hes doing these things and cant stop it, but i love him regardless of any condition he has he's not changed from being who he was.

Also can i ask sometimes he slur's his speech and gets things abit twisted even though he seems to be the only one who notices it i rarely hear it :dunno: Do most FM suffers get this?

He feels and quite understandably so alone with it all, that he has no one to talk to due to me not understanding how he feels which it right, id be a liar if i said i do i dont suffer with FM so cant relate. Is there anyway i could maybe help him see he isnt alone and i am here? i maybe cant help or advice but i can listen.

Thanks again :hugs:

Oh one last thing the gp is reluctant to give sleeping aids and hes tried over the counter one's which fail to work, hes very slim and tall but is like a horse when it comes to medication, is there any thing you could advice?
Been with my gorgeous man since 16-10-07 :)
Still trying to come to terms with his d/x of FM which was made on 14-07-11
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Re: Hi i'm new and need advice please.

Postby SuziM » Sat Jul 16, 2011 9:40 pm

Hiya...and firstly big hugs!! :hugs: You're going through something difficult and it must be very hard for you. I know my hubby suffers almost as much as I do, and finds it hard to accept that I'm not gonna get better! He does the 'it's not fair' thing ...so I don't have to!
You asked about slurred speach/muddling things and words up...I do this, and have done for a long time (I only got my dx 2 weeks ago, so until then I just thought I was going nuts, so to find out its a symptom of this thing is actually a relief) I often start saying things, then the words somehow get twisted in my mouth and come out wrong...does that make sense? I often find the slurring is a pre-cursor to a migraine...does he get headaches? I started taking amitriptyline 6 weeks ago, and my sleep has improved since then, has he tried this? I take quite a high dose, and it doesn't really take away the pain, but getting a good few hours sleep defo helps!
I really feel for you both...I've had joint pain since I was 15...I'm now 42...so it's always been part of my life, and I try not to let it stop me doing things. I've been on family skiing holidays for the last few years...and yes...it's horribly painful....and I have to have a sleep when we come off the slopes before we eat...but I am grimly determined to do things that are 'normal'...even if it gives me pain.
I think what I'm trying to say is, it is still possible to do the things you enjoy together even though he has this problem. My GP is in dispair with me because they patch me up...and I go and do something stupid and cause a setback....but I have great fun doing it!!
Try not to think of FM as an ending.....more an add on!!
Oh....and try to get to see a young consultant/GP...they seem a lot more 'up' on FM than the older ones in my experience...who are still diagnosing plague and consumption!!!
:goodluck2:
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Re: Hi i'm new and need advice please.

Postby FluppyPuffy » Sat Jul 16, 2011 9:56 pm

Getting words jumbled up, using the wrong words and sounding a bit slurry is a part of FM, hope that will ease his mind a little, but if he's still concerned you could mention it to you gp, just to be sure. The one thing you'll find we say quite a lot on here is, if there are new symptoms, or symptoms getting worse then have it checked out with a doc rather than just assuming it is down to FM as there could be something else causing it. For example, I recently had a review of my meds and had some symptoms that had got worse. I told my gp about it who sent me for tests and things. When the results came back, instead of FM being the cause of them, it turned out to be diabetes.

One of the meds usually prescribed for pain and sleep in amitriptyline, which is an old style anti-depressant that was also found to help with sleep and pain, but it doesn't suit everyone. If that's not a suitable med for him, an alternative to it is nortriptyline which is supposed to have less side effects, so that might be worth asking about.

To help him feeling less alone, you could try to get him to have a look on here, either with you, or, if he wants to, he could join us himself. Maybe seeing just how many of us with similar problems to him will help. There are also support groups which meet up at different times, maybe having a look to see if there is one in your area and going to a meeting could help.

One thing that might help with areas he has more pain in is applying heat to it. A lot of use the wheaty bags that can be heated in the microwave and put on an affected area. It doesn't take it away, but can help with easing the pain, or a good old hottie bottie wrapped in a towel works just as well. For the all over general hurtyness, a soak in a warm bath can help as it does the same thing as the wheaty bags and hottie bottie, but all over the body.


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Re: Hi i'm new and need advice please.

Postby FluppyPuffy » Sat Jul 16, 2011 10:05 pm

I like what suzim has said about FM not being an ending, as it's true. Once you get thru the frustration and anger and other things it stirs up, you do accept that FM is a part of you, and altho it is life altering/changing, it is possible to have a life with it and have some pleasure and enjoyable times. Altho FM is around all the time, some people have times where their symptoms ease back to such an extent that they can carry on with a fairly normal life, and others have had their FM go into "remission" for periods of time as well, so there is always a glimmer of hopeful light for us all :fingerscrossed: :fingerscrossed:


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Re: Hi i'm new and need advice please.

Postby efrem » Sat Jul 16, 2011 10:59 pm

hello whitebutterflies,welcome to the forum.i was reading your posts and understand everything you have said.i have been a member for a few mths now and find it to be a lifeline(knowing that you are not on your own).i have had fm for 7 yrs now.since having fm i have found it to be a constant battle of wills.trying to come to terms with the fact that you can not do what you used to do is hard.i am slowly readjusting my life-as listening more to my body and stop doing things when my body says enough even if its not completed.

Forgetfulness is quite regular which is annoying,making sure i write things down or my wife keeps reminding me.not sure if medication contributes to this but without the medication things would be unbearable as found out(yep,forgot to take taqblets on some nights). you might find that sometimes things may get abit tense but we don't mean to.i do know that i could not manage this on my own and thanks to my wife we struggle on.some evenings i may fall asleep in the chair but knowing caz is there is reassuring.well what i am trying to say is that we raelly do love our other halfs even when things do get tense.
take care,efrem :D :penguin:
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Re: Hi i'm new and need advice please.

Postby whitebutterflies » Sat Jul 16, 2011 11:02 pm

Thank you both so very much for your help and posts. SuziM yes hun it did all make perfect sense to me, bf thinks that i notice when he mixes up or slur's and to be very honest i don't. I hear him the way i guess he was meant to say it weather ive just got used to it or not i don'd know but as i say i don't hear it. Yes he has tried ami before and made him poorly, so he had to stop taking it.

Yes he has headache's daily and they don't seem to give him a brake, and usually after 2-3 days tun into a 2-3 day migraine.

At the minute he see's it very much as the end he's thinking about things like not remembering people ect he scared which is understandable because so am i.

thanks again ladies means a lot that you reply and your help is priceless x

to help with his symptoms i will write them here for you.........

headaches
constant pain
forgetfulness
slurring
IBS ( i try to help with this as i suffer this also)
vertigo
insomnia (chronic)
blurred vision
tightening of the throat and chest (not sure if this is to do with FM or not ?)
needing to urinate but not being able to
fluctuation between constipation and runs
breathing difficulties
hand tremors
restless leg syndrome
hot and cold flushes (similar to those when you get a cold )
cold symptoms runny nose ect
feelings of that of a stroke but not visable
heart palpatations
lack of concentration
reddening of the whites of the eyes ( again not sure if this is down to the FM or something else)


we cant think of any more at the minute but i will let you know if we do.
Been with my gorgeous man since 16-10-07 :)
Still trying to come to terms with his d/x of FM which was made on 14-07-11
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Re: Hi i'm new and need advice please.

Postby whitebutterflies » Sat Jul 16, 2011 11:05 pm

efrem thank you for your reply is good to know couples can get through this together and support each other, i think once the initial shock has gone and we have let it all sin in we will be ok.


Its so raw and fresh at the minute. Ive been reminding him of meds for a while now when i actually remember as well :yikes:



Another symptom fatigue hes constantly tired but unable to sleep
Been with my gorgeous man since 16-10-07 :)
Still trying to come to terms with his d/x of FM which was made on 14-07-11
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Re: Hi i'm new and need advice please.

Postby denys » Sun Jul 17, 2011 12:16 am

Hi Whitebutterflies :welcome: to the forum, :goodluck1: with your OH's appointment, as the others have said read around the boards, encourage your husband to read to, he doesnt have to post but he may get a sense of things and he will see that we do have a few men on here too who I'm sure would be only to happy to talk to him about things from a male point of view :hugs: :hugs: :hugs: :hugs: :flowers: :flowers:
Denys

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Re: Hi i'm new and need advice please.

Postby FluppyPuffy » Sun Jul 17, 2011 9:57 am

Most of the symptoms you've listed can be due to FM, some of the one's you're unsure about may also be due to FM as it affects all so individually. Go thru them when you go to see your GP with your OH, that way you'll have a better idea of the things that are affecting him, then hopefully you can start trying to find a mix of things for him to try and manage it :fingerscrossed: :fingerscrossed: :fingerscrossed:


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