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The UKFibromyalgia Forums • View topic - hello i guess



hello i guess

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

Moderators: perseus, *Lisa*, FluppyPuffy

hello i guess

Postby mkupton » Mon Oct 22, 2012 9:24 am

I don't even know what the point of this is?

How can so many on here remain so positive?

I'm sure many here are in denial to the fact that
they are stuck with this until death parts them.
So why not make this parting now?

I don't want to bring everyone down, but living with
something as devestating as this seems impossible
every single day.

Myself, I'm exhausting any and every possible "remedy" / possible "cure".

Only so I wouldn't die with the regret of not having at least tried.

I'm 21 and don't want to end up as another 50 year old saying "I've had FM for almost 40 years"

Anyway, I ask again, what is the point?
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Re: hello i guess

Postby Iceskatemum » Mon Oct 22, 2012 9:53 am

So sorry you are feeling so low about all of this , it is a lot to take in and as you say many of us go through various stages of grief for the life we thought we would be living at what ever age we are diagnosed .

One of these stages is denial , another stage is the acceptance that this is the new you and you have to learn to live within the boundaries that this illness has given us. (see the stages of grief post that some people found helpful.....sorry mods can't do linky)

The first thing I would recommend is to try and get the correct meds for you then you will hopefully be able to cope better with the pain and discomfort that this illness can cause. You can then work on managing your fatigue if that is someting that is causing you concern. Its a long process but once you know your boundaries you are half way to accepting the new you .

As well as chatting to people on this forum I would recommend going to one of the support groups . There various people can give you a better understanding of what life with FM is really like.

From the various post you will see that many people have learnt to lead a full and active life with FM , they have restrictions but they still can manage to work , raise a family and get out and about .

You are very young to have been diagnosed with FM and it must seem a daunting prospect but there are others on here who are also in the same situation. Perhaps chatting with them might help you gain a better understanding of how things are for them .
Hope things seem better for you soon

gentle hugs :grouphug: ISM
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hello i guess

Postby MsBabylove11 » Mon Oct 22, 2012 10:31 am

Hi, I just wanted to say that I too have been where you are at, I've suffered for a few years now but got my diagnosis in feb this year, I have a fiancée and 4 kids plus 2 dogs! (I got the dogs when I thought it was all just depression and hoped they would help me get out as I was suffering major anxiety attack and I couldn't even take my kids to school so there came a time when it had been going on for nearly 2 years and in the end my children were put on the child protection register as they told me I was EMOTIONALLY neglecting them by not taking them in!

I have been battling with social services ever since and let me say that the build up to the child protection level was gradual but all they ever did for me was pile on the pressure and stress telling me how my kids are very bright and are under achieving and not making friends, are anxious at school etc etc (not what u need to hear when u just need a little help)

Well I think it's been nearly 3 years now since it all began, in the first 3 months of school following the first child protection conference, all of my kids were back up to the level of achievement that they should have for their age and in fact in my two eldest they had exceeded the national average!

They had also been to school regularly although some days late but at least they were there even if it cost us £50 a week at sometimes! So we carry on this way until the next conference and feel that they will have nothing to complain about now as they know my kids eat healthy, have lots of love, are well dressed and polite and we expect to hear all is good and we can come off the child protection list but NO! They move on to complaining about being late now where as b4 they told me late is better than not at all!

All this time my body has not changed but my will power has, not once have I had any HELP from social services in fact all their involvement and added pressure has made me so I'll at times that I hurt for weeks!

When I was finally diagnosed their whole attitude changed! At the last conference it was all about how they are goin to help me and do u know I STILL haven had any help!

I'm due to have another conference in November, I believe they will lower us from child protection to children in need but tbh I don't care anymore! I'm done with letting them upset me, I'm just gonna put my blinkers on and carry on as normal!

I know where u are coming from as this has all been such a strain on my relationship with my partner, he has a lot of blame pointed at me although it's never said directly but he will make snide comments etc, I know he's upset about the messy house and piles of washing but tbh I think he needs some help to vent some of his frustration!

We have been through all the stages of grief for the life we could have had but I stay strong because I have experienced for myself that trying new meds and going to pain clinic have helped me tremendously! And what's bad today will be good tomorrow even if you feel at the time it won't!

I would do what I did and just keep on at you're doctor, that's how I got my diagnosis so fast! And if the doctor is no good then switch like I did, you see I was taking lots of diff meds at one time and was even on a 75mg fentanyl patch which they give to cancer patients for my pain but my sis was on OxyContin and they really helped her so I'm now on 20mg twice a day, it's like a miracle tab! I had the same effect from going onto mirtazipine but had bad side effects!

What I'm trying to say is that I know how you feel and please don't give up, if this illness has taught me anything it's that it changes so much so even though you feel like dying today, tomorrow might just be a good day but remember to pace yourself when it is! Lol

Sorry for rambling on a bit but I just wanted to reach out and let you know what I've been through! The pain clinic was great as u finally meet people who know how u are feeling! Living with chronic pain and fatigue is hard but you owe it to yourself not to give up!

I hope that u feel better soon and I'm always here if u need someone to moan too cos I'm pretty good at moaning back! Haha

Chin up chick and remember the words of Ella fitzgerald, she sang....

"what a difference a day made" xxxx
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hello i guess

Postby MsBabylove11 » Mon Oct 22, 2012 10:32 am

Wow I really can ramble on! Lol sorry!
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Re: hello i guess

Postby shazq » Mon Oct 22, 2012 3:43 pm

:welcome: mkupton :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: hello i guess

Postby FluppyPuffy » Mon Oct 22, 2012 4:22 pm

:wave: :wave: and :welcome: to the forum.

I'm sorry to hear how you're finding things at the moment, being told you have FM does turn everything upside down, and it takes a while to wade thru all the blackness and find what is right for you.

There are some of us that are in denial, esp when first dx'd, it's one of the stages we seem to go thru before we can start to live with this condition. The fact that some of us are more positive about things probably comes from being that bit further down the path as we have started to find how to live with FM rather than battling against it.

With you asking what is the point, what are you wanting to know about?? The point of the forum is to try and offer help and advice and support to fellow FMers, as well as share info about things in the hope that it will be helpful to others. If it's the point of FM that you're wondering about, that is something we can't answer unfortunately.

If you're wondering about the point of life with FM, esp your own, then maybe you need to consider talking to someone about this who is able to help you with the thoughts that seem to be overwhelming you currently.

Things do initially seem impossible (I know as I have been there far too many times myself) but with some patience and perseverance, it is possible to find things in life that can help and give you back some reasons to make life feel fuller again.


If your dog doesn't like someone, then you probably shouldn't either
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hello i guess

Postby Morgana » Mon Oct 22, 2012 4:52 pm

I have been where you are; you wonder why you are bothering when your body hates you so much... and I am not going to lie to you and say that the darkness doesn't creep up on you at other times, but there is a point. Life is what you make it; and for all the times you take a walk on the dark side there will also be times when something makes you smile, or laugh until you have tears rolling down your face.

I am glad I didn't let the darkness win. Yes, sometimes I struggle; but there is always a glimmer of light on the horizon.

Most of all remember; you are not alone.

Mo x
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