Worried, scared and alone

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Worried, scared and alone

Postby blackeyed.d » Tue Jan 06, 2015 6:59 pm

Hi, my name is Debbi, I'm a newbie to this forum. I was diagnosed with FM and CFS in August 2014 after many. many years of suffering.
I thought that once I had a diagnosis I would finally receive the support I need, but no, I just got prescribed Tramadol and Duloxetine and was basically left to get on with it!!!

In the past few months I have really, really struggled, my mum died on Sept 2nd, 4 days before my wedding, she was then cremated whilst I was on honeymoon. On returning I started my dream job, however due to my grief, depression, pain and fatigue I have spent more time signed off sick than I have working.

I am worried hat I will lose my job, my husband and my sanity!!!! :( :(
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Re: Worried, scared and alone

Postby topcar69 » Tue Jan 06, 2015 8:01 pm

Hi Debbi I'm with you hun I was diagnosed last year after year's of suffering strange things now known as fibromyalgia. I agree support is rubbish we have to fight for support its so wrong. There are lot's of support on here and Facebook don't give up xx Your not alone.
My name is Tina.
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Re: Worried, scared and alone

Postby ktgreen123 » Tue Jan 06, 2015 8:18 pm

Hi Debbie,

I was also diagnosed with FM in November. It is hard on its own let alone with other family struggles.

Have you looked at support groups in your local area? I found one and plan to go in the next 2 weeks.

Hope you feel better in yourself soon!

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Re: Worried, scared and alone

Postby Zelphi » Tue Jan 06, 2015 8:23 pm

Hi Debbie, my name is Wendy. I was diagnosed about 5 years ago after years of suffering , I was given amitriptyline and never had a follow-up. I live on my own, though my son calls in frequently. I have had several falls recently which worries me. I gave up work last year to care for my parents but have now had to give that up as I am unable to do the required hours which has led to being depressed and emotional. I wish there was more support out there.

Gentle hugs to you xx
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Re: Worried, scared and alone

Postby Wiggles » Tue Jan 06, 2015 8:59 pm

Hi Debbie,

Like the others said you're not alone. I'm 18 and have fibro for 4 years so my friends never understood.
Like you I have recently started my dream job but I found talking to my boss the best thing for me to make sure they understood
how it is the best they could.

I can only hope your boss is understanding as I'm sure everyone knows not everyone can be ay.

Doctors are useless but just keep on at them and maybe even try changing doctors if you can. I was so persistent and now I have an appointment for Barts in London with a specialist. In the meantime though I've still been left in the lurch. Just a waiting game now.

Please don't ever feel you're alone, you have everyone's support :)

Wishing you all the best,

Reagan x
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Re: Worried, scared and alone

Postby FluppyPuffy » Tue Jan 06, 2015 9:10 pm

:welcome: to our little FibroFamily Debbi. With you making this post and also a very similar one on the "Introduce Yourself" topic, to save on the confusion and chaos that inevitably follows when replies are made to very similar topics, I've removed one of them and moved this one into here as your introduction with you already having received some replies as they are all in the one place.

A lot of how you are thinking and feeling has been experienced by a good number of us, so you're not alone with this. Maybe have a bit of a looky and a read of some of the stuff across the boards, you may find some of what others have experienced helpful in finding your way thru this stage of your FibroQuest.
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Re: Worried, scared and alone

Postby dazzleship » Wed Jan 07, 2015 8:11 am

Hi Debbi

welcome to the forum here :-)

The trouble is, as many of us have found, is that there isn't really a lot that can be done for Fibro so even when we get the diagnosis we are pretty much 'on our own' when it comes to GP help. And of course all the GPs want to do is throw painkillers at us as it's the only thing they can try.

I am very sorry to hear of your mum's death at such a time in your life :hugs:

I know it's easy to say but hard to do, but you really must try not to stress out so much as stress definitely makes Fibro symptoms worse. Also if you focus too much on something negative it can make it more likely to happen, a self-fullfilling prophecy if you will.

I myself am very guilty of worrying about anything and everything, and seeing the downsides of things, and I realised at the end of last year that it's just no way to live. So much energy is spent on negative thoughts and feelings that it just drags a person down. Now I'm trying to be more positive about things and appreciate what I've got because I know things can change or end in an instant. It's not always easy I admit, but it is worth trying.

I hope you can find a way to focus on the positive things in your life - you have a husband who loves you, a dream job, and although you no longer have your mum with you here, you can remember the good times you shared.

Good luck xx and here's a cat for you :cat2:
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Re: Worried, scared and alone

Postby denys » Wed Jan 07, 2015 2:27 pm

Hi and :welcome: to the forum, I can't add anything more to what has already been said so will just send some :hugs: :hugs: :hugs:

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Re: Worried, scared and alone

Postby blackeyed.d » Wed Jan 07, 2015 4:31 pm

Thank you everyone for your kind words. I have joined a group on FB and I am looking for a support group in my local area. Fingers crossed X
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Re: Worried, scared and alone

Postby whoami » Wed Jan 07, 2015 5:12 pm

Debbie, welcome and I am sending :hugs:

It is a struggle trying to adjust to this new way of life. I do think that some of the Dr's Struggle with how to treat and support someone with this illness. There is no one set of rules for treatment as we all have a variety of symptoms some the same, some unique to ourselves.

I was diagnosed only 6 months after I was married. I had an accident at work that triggered the fibro and haven't worked a day since the accident. I really felt for my hubby as it would be him living with this illness also. This was over 25 years ago and we are still very happy together.

Debbie, it may take a while but you will find that you will learn new ways of enjoying life. Enjoying things you did before fibro but in a different way. Things may be done a bit slower, maybe a few things won't get done at all but you will adjust. You have to give yourself the OK to say.......you know what, I can't do this the way I did but I will do it my way.

Ask your Dr if he can send you to a pain clinic. I also saw a psychologist at the beginning, he helped me deal with the guilt of thinking I needed to work, needed to explain or justify to everyone about how I felt. There are a variety of treatments that may help, may not or may give some short term relief. Ask others, read and request to try different treatments.

Debbie, things will feel better, maybe not tomorrow but they will. Fibro is not going anywhere, it is staying with you but don't let it define who you are. You are Debbie and you can llive a happy life. Xx

Expect the worst in life you won't be disapointed and you'll be prepared!
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Re: Worried, scared and alone

Postby bekindtoyou » Mon Jan 12, 2015 5:12 pm

Hi Debbie one of the things that came out of some counselling I had was how angry I was about my poor health which perpetuated the symptoms .. I got upset cause I couldn't do things ..,got angry cause I felt mentally and physically weak etc etc .. I worked out I needed to be kind to the illness .. Make it my friend rather than the enemy. Or I guess a better way of saying it is to live alongside it. Sounds a bit barking but it has helped. Not all of the time but sometime.
I also say sorry to bits of my body when I'm pushing them through stuff.. Getting up the stairs and my knees are painful.. Hanging clothes up (not so often lol) and my arms are like ton weights. I say oh you poor arms .. Rather than bleeping bleeping bleeping stupid arms which just makes me hot and very tired .. Hope this helps and doesn't sound too mad. :-D
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Re: Worried, scared and alone

Postby Kerryb » Sat Jan 17, 2015 1:09 am

Hi Debbie I am so sorry hun I have had fibro for over 20 years now. Doctors are not much use to my just hand me my slip to get more meds. It took me a year if nagging my doctors to be assessed again for my fibro as all I ever got from them is there is nothing wrong that the specialist told everyone they had fibro. So you can imagine my relief when I was told yep you have fibro. We need more docyors who understand the illness so as we can be helped. You are not alone and there is plenty if help out there through facebook and Twitter. Sending you hugs and spoons xxxx
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