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The UKFibromyalgia Forums • View topic - Recently diagnosed and scared!!!!



Recently diagnosed and scared!!!!

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Recently diagnosed and scared!!!!

Postby rashi » Mon Oct 29, 2012 11:50 pm

Hi I am not sure if I have posted this in the right place but need advice.

I have recently been diagnosed with fibromyalgia, muscle deterioration and severe Vitamin D deficiency.

Everyday is a struggle and I have 3 young girls to take care of. I am terrified as I dont know how much worse I am going to feel and worry about my daughters.

Its comforting to know I am not alone. Its difficult trying to get my loved ones to understand how I feel.

I have always been so fit and healthy, I was devastated when I was diagnosed.

How can I beat this??????
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Re: Recently diagnosed and scared!!!!

Postby jackapple » Tue Oct 30, 2012 12:04 am

there are loads of fibromyalgia groups on facebook that you can join and your doctor should know of local support groups you could go to around your area these are worth looking into as it has helped me loads
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Re: Recently diagnosed and scared!!!!

Postby rashi » Tue Oct 30, 2012 12:07 am

Thank you. Everyday I seem to feel worse rather than better.
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Re: Recently diagnosed and scared!!!!

Postby Moobaloo » Tue Oct 30, 2012 12:25 am

Hi rashi & welcome to the forum :)

I think we have probably all felt the way you're feeling...I am also only recently diagnosed & I'm still trying to come to terms with it & the adjustments to my (& my family's) life.

You are obviously really suffering at the moment , and although the fibromyalgia will never go away completely, you WILL have days that are better than how awful you're feeling right now.

My advice would be to listen to your body & rest as much as you can - hard when you've got children, I know. But don't be afraid or embarrassed to ask family members or friends for help if you need it! Take all the help you can get, because it really will help you to feel better. The key is to pace yourself & not try to do too many things in one day. The world will not end if your housework doesn't get done straight away! :)

If you need answers to questions, I have found this forum invaluable & you usually get a fairly quick reply.

Look after yourself :) x
Last edited by Moobaloo on Tue Oct 30, 2012 11:11 am, edited 3 times in total.
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Re: Recently diagnosed and scared!!!!

Postby rashi » Tue Oct 30, 2012 12:44 am

Hi Moobaloo

Thank you so much for that.

I have never had to rely on anybody for help and do find it difficult to ask. I am OCD when it comes to my home and when my body is screaming at me to stop my head is telling me different.
My eldest daughter is 8 and she is scared. She does so much to help me especially with my other 2 daughters but I dont like relying on her for that cos she is so young. My hubby is great and tries to help me but I am such a stubborn mare.
I feel I am a shadow of the woman I used to be. I look so unhealthy and am very underweight.

This forum is excellent. Everyone is so lovely and helpful.
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Re: Recently diagnosed and scared!!!!

Postby TracyOwen » Tue Oct 30, 2012 6:53 am

I too have been recently diagnosed although I have had fibromyalgia for some time now...it just finally has a name...It is scary but mostly because I am scared no one will understand. Unfortunately, I was unable to have children and I can't imagine the additional stresses that would cause but I agree with previous posters. Pace yourself...get a calendar and get organized and when the days get too overwhelming, ask for help or plan for assistance on busier days. And make sure you have some time for yourself...schedule it in!

Tracy :-)
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Re: Recently diagnosed and scared!!!!

Postby mouseyone » Tue Oct 30, 2012 9:19 am

Hi I am recently diagnosed too and struggled to come to terms with it all. I too am taking the vitamin D suppliments. Take your time, its a lot to take in. If theres one think I'm learning its to pace myself. As u can see you are not alone with this. Sending love n hugs xx

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Re: Recently diagnosed and scared!!!!

Postby juliem » Tue Oct 30, 2012 9:58 am

Rashi welcome to the crazy world of fibro. We're all scared at times. I was diagnosed 4 years ago. I'd never heard of it. They reckon I probably had it for 10 years. I came home, googled up and cried and cried.

I'm lucky in so far my youngest was then 16. But i had to give up work. Now my children are all away but I have 3 dogs which keep me going and a wonderful husband.

Your life will vary as to how much pain and problems you are having but my advice would be to find a GP you trust. Vit D is easily solved and that will help spasms.

Like you I'm not good asking for help but sometimes you just have to. If you need to rest then try to. Also sometimes you will have to change plans because of how you are feeling. Accept that, though I find that the hardest thing. I'm terrible about feeling I'm giving in but its a daft attitude. Its not giving in it is being sensible.

Above all try to keep positive. Its a different life, yes but it can still be a wonderful life . :hugs:
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Re: Recently diagnosed and scared!!!!

Postby shazq » Tue Oct 30, 2012 3:57 pm

:welcome: to the forum rashi :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: Recently diagnosed and scared!!!!

Postby masonsbarms » Tue Oct 30, 2012 7:31 pm

hi, rasi, sorry to hear you have had this news,

i understand your fears and the stubberness, we have all been where you are now and its a normal feeling,

as has been said it may not always be like this everyday we all have ups and downs and we are all differnt,

but the lesson that i think is the most important is i cant do what i did pre fm.
hard to swallow and took a long time to learn.

you need to learn as much as you can about fm and how it affects you what makes it worse or easier,

you also need a good gp who will get you all the help available to you,

i dony have young children but i still work full time with my own bussiness and hubby had joind to help me so i can relate to how its hard to rest up.

have you any help with your ocd as that will make you feel worse with the stress it puts on you.

we have all got to learn to live and adapt with this and it takes time but with help we can try to make life a bit better,

you need to listen to your body ans as has already been said we have to get and take all the help we can,

the people on this site are amazing at advice and support so use it when ever you need to its got me through my worst times.

take care
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Re: Recently diagnosed and scared!!!!

Postby FluppyPuffy » Tue Oct 30, 2012 8:34 pm

:welcome: to our little fibro sanctuary rashi :wave: :wave:

There is lots of info and advice across the forum, so have a look around when you get a chance. With you being recently dx'd, you could find some answers to questions and things you're wondering about.

How you're feeling at the moment is fairly typical of what happens after you've been told you have been told you have FM. There is a lot to take in and get used to, and everything is turned on its head while you're finding your way there.

It's not easy to say how bad you can/will feel, as the nature of the condition is very vague and unpredictable. There may be times where you feel virtually normal or find that things have eased back considerably, but there is no way to say when/if/how these times might happen. And it's understandable that you are worried about your daughters, you want to be the best mum you can be for them and this condition it doing it's damnedest to mar everything you hold dearest.

My son was 3 1/2 when I started with different problems so all he knows and has known is me being in varying states of being affected with FM. I was worried about how it was going to affect him, and did everything I could to stop it taking hold as I was also a stubborn mare. Unfortunately this didn't help and affected me in more ways than I realised. Over time I found ways to still have quality time with him that didn't drain everything out of me within seconds and he's turning out OK, even for a teenager. He's intelligent, articulate and is currently studying A Levels, so that gives you an idea of how long I've been a part of the club :mrgreen: :mrgreen: :mrgreen: :mrgreen: Your girls will learn and understand about how you are, and will learn to live with their mum having this horrible FM. So long as they all know how much they are loved and that you are doing your best for them, they have every chance of being whatever it is that you dream for them.

As for what you can do to beat it, without wanting to flatten any hopes you have, beating it doesn't happen very often. There are a very lucky few who have found themselves either free or experiencing very few symptoms and problems. Whether this is because the condition has gone completely, gone into a dormant~like state, or they have found the right ingredients for their particular management recipe, we can't say one way or the other until a lot more research has been done into all aspects of FM. For most of us, it's more a case of finding the right combo of things to manage our FM so we can still have some form of life. That takes time and involves a fair amount of trial and error, but it is possible to.

Start by taking things day~by~day, bit~by~bit. Now you've joined us, we'll try to help you thru things to get you there :wave: :wave: :wave:


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Re: Recently diagnosed and scared!!!!

Postby fibrobilly » Tue Oct 30, 2012 9:38 pm

HI
I have had Fibro for over 12 yrs, it is difficult at first to find what meds help with the pain, lack of sleep,it takes a while to come to terms with not being able to do the things you have taken for granted,also try and find a local Support group, it is good to see and talk to other
fibromites and confirm that you are not going mental. :pull-hair:

John
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Re: Recently diagnosed and scared!!!!

Postby rashi » Tue Oct 30, 2012 11:43 pm

Thank you all for your kind words and advice. Its comforting to know I am not alone with this.

I have had a terrible day today and not been able to walk as my legs just dont want to work.

How bad can this get? I am terrified about ending up in a wheelchair. I am losing so much muscle weight in my legs that they cause me so much agony.
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Re: Recently diagnosed and scared!!!!

Postby julia1red » Thu Nov 01, 2012 10:11 pm

hi, i too have been diagnosed with fm but called back to rheumy as my ck levels is high showing muscle deteration got to wait on more test results feeling very confused and lots of pain xxxxxxxxxx :(
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Re: Recently diagnosed and scared!!!!

Postby AndrewK » Sat Nov 03, 2012 12:16 am

Hello,
I am a bit different, a man with FM, recently diagnosed and not wanting to accept that I have this.

I use a SAD light which helps with the Vit D issues, may help you too
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