Joining the club!

All your fibromyalgia experiences, questions and answers.

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Joining the club!

Postby SopsIsTops88 » Mon Nov 18, 2013 6:40 pm

Hi everyone,

So finally I had my formal diagnosis last Thursday, I went to see the Rheumatologist... and in under 5 minutes he had confirmed what I have already known for ages - that I have Fibromyalgia. He put me at ease and explained to me most of the stuff I already know, prescribed Amitriptyline and sent me on my way.

That day I felt such relief, I've been waiting for this moment for years. That day I was happy, even though I spent most of the day in bed as I had a pretty bad flare-up - nothing could take the smile off of my face. I thought that this feeling may last a while...

But as I woke up the next day, with excruciating neck pain, aching feet and a headache the good feeling quickly disappeared. Ever since then, (5 days now) I have felt like a mess. I can't stop crying at the silliest little things and I feel really down. I've heard about the grieving process associated with getting a diagnosis, but I feel so up and down at the moment I don't know what to do.

I have tried to explain to family and friends what Fibro is, and only my mum and boyfriend are completely understanding. My other friends and even my sister haven't seemed to care much. I handed my sister the information booklet and she couldn't be bothered to read it. I feel like I should just keep this illness a secret as no-one seems to care much anyway!

Any info and advice would be greatly appreciated on learning how to cope in the first few weeks of a diagnosis :(

Thank you,

Sophie x
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Re: Joining the club!

Postby libbiek30 » Mon Nov 18, 2013 7:27 pm

It takes time to come to terms with being diagnosed with a chronic illness give yourself time. See if it gp can refer u for acupuncture I had it fir over a year and it has really helped with the pain and I hardly get any headaches now. Also if u continue to feel down tell it to you made some antidepressants as well as the amitriptyline. I take 10'm of amitriptyline and 50 0f serterline. Good luck :-D
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Re: Joining the club!

Postby FluppyPuffy » Mon Nov 18, 2013 7:40 pm

What you're experiencing at the moment Sophie is what most of us have gone thru when we were told we have FM, so you're in good company. It seems to be part of the process we have to go thru, and you just need to give yourself some time for things to go in and start to make a little more sense. It's as if the relief at getting a name for things is swamped by the realisation and enormity of what FM is, and that it will be with you for pretty much the long haul. It's the first stage of your FM journey after dx, and will take as long as it needs for you to get thru it, because if you try and rush things, they'll just come back and bite you on the bum I'm afraid :facepalm: :facepalm:

If you have any movement in dosage of any meds you're taking, increasing them could help make you feel a little more comfortable while you get thru this part, checking with your GP would be what is needed. You could also see about referral to Pain Management/Clinic in your area, they may be able to give you access to other treatments, therapies, such as acupuncture, physio etc.

There are ways to help manage things, it just needs time and patience to try them and find the right ingredients for your personal cocktail.
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: Joining the club!

Postby Fibro Fi » Mon Nov 18, 2013 8:54 pm

Hi Sopsistops88,

I'm so glad you finally have your diagnosis and sorry that you are having a difficult few days.
I was diagnosed a year ago but like you knew I had FMS for donkeys years. Like your rheumatologist, mine gave me a leaflet but also said I wold be running a marathon in a years time! Not true of course. I've just returned back to living in the UK and its only now that aim realising what this illness really means as I can't do what I used to do.
I don't think there is any magic answers or a quick route to acceptance except time. A friend said me today that focusing on what I can do rather than what I can't may be beneficial and I think she's probably right. ATM, I am trying to fight this illness with trying to work out my 'personal cocktail' as fluffy puppy puts it! I can't give up hope that my health will improve otherwise I will fall into a deep depression, but at the same time I have to remain in reality that this illness has and will change my life.
Hang on in there! Try not to feel guilty about being upset at the moment because it is normal to react like this. As I often say to friends who are going through tough times, just sit on that conveyor belt and let it take you through. These awful few days will pass and the sun will shine again just as you will do!
Good luck!
Fibro Fi
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Re: Joining the club!

Postby painprincess1 » Tue Nov 19, 2013 5:44 pm

welcome to the club hunnie.
you know what i don't remember if i ever cried or not i was just glad i knew what was wrong.but even after all these years i still don't no it all ,i still get days where i get mad and upset i got this.and days where i come in here and panic .just remember your not alone nothing u ask is silly or a mistake if u need to rant as im sure you have been told this is the place to do it ,xx
smiles and the world smiles with you. cry and you cry alone.
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Re: Joining the club!

Postby SopsIsTops88 » Tue Nov 19, 2013 10:12 pm

Hi everyone,

Thank you for all of your lovely replies. The best thing is coming back from a long and painful day at work, and reading about your own personal journeys through diagnosis and treatments, it really does makes me feel better that I'm not alone.

I just wish people would take it seriously, friends who would normally support me have turned a blind eye, and now my work are being difficult and don't seem to want to make any changes in my job to make life easier. It's like they don't believe me!

I guess my biggest worry is having to keep this all to myself whilst trying to keep everything together, such as work, family and social life. If no one seems to care, it seems like I should just be quiet about my condition - most peoples attitudes have been put up and shut up.

I feel like I want to scream and let it all out...
I really hope it gets easier!

My next doctors appointment is in a couple of weeks. I hope he'll be able to refer me for other treatments to help as I'm not sure what else to do.

Thanks for all the support and comments, this place is amazing.

Sophie x

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