Just Diagnosed

All your fibromyalgia experiences, questions and answers.

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Just Diagnosed

Postby E-Bunny » Tue Jun 04, 2013 10:29 am

Hi guys / gals,

I posted a while ago after a week of aches and pains suddenly becoming unbearable !! After a course of painkillers this finally subsided. I never lost the constant achy, sometimes throbbing in my arms, legs, shoulder blades... Although some days i get it from head to toe o.O

Anyway, on sunday evening I took my usual cocktail of meds for epilepsy and RLS. 10 minutes later this severe pain returned ! i could not touch my jaw, neck, shoulder blades, upper arms or lower back and knees !! Even my clothes caused the pain to worsen. I immediatly panicked thinking I was having an allergic reaction to a med ( daft really as ive been taking them for nearly a year now ) and went to A&E. 13 hours later and many painkillers, diazapam and bloodtests oh and BP checks ( which made me scream in pain every time ), they found nothing, so told me i had shingles and discharged me !? I thought shngles had a rash ? lol

I went straight from the hospital to my GP as I was no happy that i was in so much pain, and was discharged with such a silly diagnosis !1 Also as I have had this pain before, it was deffo not shingles.

It was a locum Dr as mine was on holiday for 2 weeks and he was really nice ! I explained to him about the pain, the hospitals diagnosis, and the previous time that this had happened. He immediatly began to poke me in differant areas of my back, neck and arms.. Most hurt like hell although a few didnt hurt at all. His 1st comment was that the doctors in our A&E are stupid... Then just spat out " you have Fibromyalgia " .. This may seem daft, but I would have preferred the shingles diagnosis, even though I knew it wasnt that ! He said he specialises in rhumatology *sp ?? and it was classic symptoms of FM.

He has prescribed me 3 days of steroids, and an very large supply of cocodamol which didnt really help when i was in hospital but he said it will help speed the reduction in pain, and would help after with the constant muscle pains i get everyday !

I will return now on Monday to see him again. What happens now ? Is FM really a life long condition or is it possible that it can stop ? I already have illnesses that i have been told will be with me for life now.. The thought of another, and the thought of this pain, every day ( not even to mention the exrcuiating flare ups like this weekend ), topped off with epileptic siezures and sleepless night thanks to RLS, Think im about ready to pack it all in..

Tina
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Re: Just Diagnosed

Postby LouLou » Tue Jun 04, 2013 11:39 am

Hi Tina

I'm so sorry you had such a rubbish time at your A&E but now you have a diagnosis. I know what you mean when you say you would rather have had shingles, for months my Gp said I had FM and deep down I knew it too but while he was testing for everything else first I held onto that tiny glimmer of hope that they would find it was something else that they could treat and cure straight away.

It seems that FM is one of those life long illnesses I'm afraid, though I have heard various stories about some people having their symptoms ease off but those stories are few and far between. My GP explained to me that I had FM, would most likely have it for life and that I could have times of really bad pain and times of relatively low pain. Sorry that's the best way I can explain it.

I have times which are known as flares where the pain and fatigue are worse, then I'll have times where I can cope and be relatively normal.

There are a large number of meds you can try for the pain, though as you are on a cocktail of med already this would need a discussion with your Gp as to what you can and can't take. Most of us are on a variety and it can take a few months to find the right ones for you.

I know it's hard to deal with at the moment, we all went through various stages when we had our diagnosis and I still go through those different stages of feeling angry, sad, fed up and I've had FM for 2 years now.

Have a look at the Stages Of Grief thread as it's a handy one to read.

In addition to meds there are also a number of therapies like physio, hydrotherapy, massage etc so ask your Gp when you see him what you can/can't do in regards to your other medical conditions.

You're not alone in this and you will find a way to cope and get round things it just takes time and patience.

Take care
xx
What doesn't kill you will only make you stronger ;-)
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Re: Just Diagnosed

Postby E-Bunny » Tue Jun 04, 2013 1:33 pm

Thanks for your reply Loulou x

Im just hitting a very low point at the moment..

In just 11 months I have been diagnosed with Epilepsy, followed by miniere's disease.... Then RLS and now this.. And i have had severe depression for 11-12 years

Im a single mum, and was just barely coping.. I still work 38 hours a week ( even with uncontrolled E and regular attacks of vertigo ). Im worried about how this is going to add to already mounting problems at work, and financially with the already mounting doctors / hospital appointments ( plus sick leave as I have run out of sick pay entitlement )..

Depressed is really an understatement right now..
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Re: Just Diagnosed

Postby FluppyPuffy » Tue Jun 04, 2013 2:19 pm

Glad you've finally been given a name for what is causing your problems Tina. Like you, when I was dx'd and started finding out about the condition, I would have preferred it to be something else that could have the way it would progress and react to things be more definite.

It's not unusual to feel low, down when you're told you have FM, plus your additional worries about work, home etc will be adding to and amplifying things. Have you had chance to talk to your employer about your dx yet??? Just wondering as once an employer knows that an employee has been dx'd with a chronic condition that can have an effect/impact on their work, they are required by The Equalities Act 2010 to work with the employee to make their job as suitable for them to carry on doing with their condition being taken into account.

Unfortunately, FM does seem to be with most of us for the long haul :( :( :( :( :( As LouLou has said, altho there are those who have said their FM has eased back or even gone dormant, such stories are very few and far between. For some tho, if they find the right balance of things that helps them, it is possible to carry on with a lot of what they have done previously to a certain extent. It take time to find that balance tho, and getting there can be a bit of a bumpy ride.

WRT your work situation, there are advisers based in JobCentres who can work with you and your employer to try and help make things somewhat less problematic, so it might be worth thinking about talking to someone about what could possibly make a difference.
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