Hello from me ...

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Hello from me ...

Postby emilyrobe » Thu Nov 10, 2011 3:56 pm

... me being Emily.

I have suspected FMS and CFS, have my first appointment with Rheumatology tomorrow but all the signs fit. I've been ill for at least a year, looking back possibly longer but who knows?

It's taken me a long time to get a doc to take me seriously, I was diagnosed initially with diabetes but my blood sugar levels are stable and now they are saying it was probably a wrong diagnosis! However I do occasionally get hypoglycaemic and get the shakes and confusion.

We lost our eldest daughter to leukaemia early last year which was extremely stressful. I was fine until about Sept/Oct and then just couldn't cope anymore. My head wouldn't focus me enough and so I gave up going to Uni. I work for myself and it's been very difficult to carry on.

I have chronic stiffness in the morning and it can take me upto an hour to get out of bed and dressed. Sometimes I can be very focussed, other days I have to really think about every step of doing anything, like making breakfast, a cup of tea etc. Once I'm moving the stiffness eases but I'm left feeling like I've been carrying a very heavy weight for a long long time. I have chronic pain in my right arm, sometimes I can cope sometimes I just want to lie down and cry. I get random pains elsewhere but my arm is the worst.

The exhaustion has been pretty constant over the last year, it goes beyond needing an early night and I did used to have sleep problems, but recently I can sleep between 8-12 hours and still feel worn out. I find myself increasingly needing to sleep during the day as well.

I also have developed an anxiety disorder and am seeing someone for that. I rarely leave the house much, as I can't cope with the business of places and am becoming quite anti social.

My doc has put me on 10mg of amitriptyline but it's not done anything. Not sure what to expect tomorrow.

Anyway that's me, oh I live in Derby and have two other amazing children, hubby (possibly another child :roll: ) scatty dog and am so hoping that I can get my life back soon! Sick and tired of being told to stop trying to be superwoman :swear1: I've always been busy and really resent this illness from taking my life away!

Emx
:dogrun1:
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Re: Hello from me ...

Postby ribbons » Thu Nov 10, 2011 5:24 pm

Good luck with the appt tomorrow, some one said on here that 25mg is the recommended dose for ami (for fibro ) to help you sleep, may be you can discuss it with your rheumy tomorrow x
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Re: Hello from me ...

Postby FluppyPuffy » Thu Nov 10, 2011 7:40 pm

:welcome: to the forum Emily :wave: :wave:

Sorry to hear of the loss of your daughter :hugs: :hugs:

I hope the rheumy gives you the answers and dx's you need tomorrow :fingerscrossed: :fingerscrossed: Hopefully then you'll be able to find the right mix of things for you and get things back under some sort of control :fingerscrossed: :fingerscrossed:

How long have you been taking the amis, as they can take up to 4 weeks to fully get into your system and start effect. 10mg tends to be a starting dosage, then after a while, things should be reviewed by your GP to see if any changes are necessary. And if you feel things aren't suitable, you can see them about it.

There's a lot of advice and info on here, so just ask about anything you want to know about :clap: :clap: :clap:
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Re: Hello from me ...

Postby shazq » Thu Nov 10, 2011 8:21 pm

:welcome: to the forum Emily. :wave:
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Re: Hello from me ...

Postby *Lisa* » Thu Nov 10, 2011 8:31 pm

:wave:

So sorry to hear about your daughter :hugs: :flowers:

I hope all goes well for you tomorrow and please let us know how you get on :goodluck1:
As a Public Moderator & Admin 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...Lisa
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Re: Hello from me ...

Postby emilyrobe » Thu Dec 08, 2011 7:05 pm

Well here's my update.

Doc at hospital sent me for more blood tests and they have come back. No obvious signs of concern but I do have a vitamin D deficiency. Doc has confirmed that it's fibromyalgia and has discharged me back into the care of my GP.

Bit gutted that it's back to the GP as frankly they are rubbish and it's taken me 2 years almost to get here. Was taking amitriptyline but no effect other than to make me brainless (well worse than usual) and so came off them. No painkillers either, although recently whilst hurting I've had little real pain.

Clearly I have a stock letter from the hospital as what's in the letter doesn't relate to what I told them. As in I'm already having CBT, and that was suggested that I ask GP for a referral! They recommended Amitriptyline as well and when I saw the doc I was already taking it.

Bit deflated to be honest, GPs are rubbish and I thought that seeing the hospital would at least give me a plan going forward. I have booked an appointment for next week but it's with either a new doc or a locum, so someone not familiar with my history.

I really don't know where to go next ...
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Re: Hello from me ...

Postby FluppyPuffy » Thu Dec 08, 2011 7:49 pm

:wave: :wave: Emily, glad you've got a definite dx :mrgreen: :mrgreen:

It's very frustrating when you don't get the answers and things you were hoping for, you're left in limbo, not knowing exactly who to turn to, what to ask about or anything. How long were you taking the amis before you stopped them?? Just asking as they can take about a month to get in your system, and the dosage you started on might not have been right one for you, a slight change could have made a difference.

If I was in your situation, faced with a new doctor and a locum, I think I'd make an appt with the new dr. It's possible that they may have an understanding of FM, unfortunately the only way to find out for definite is to see them, altho asking some of the other staff there might give you an idea if they have any experience of dealing with such conditions.

This linky tells you about the types of meds used to try and manage FM http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Treatment.aspx Have a look at what is on there, and go back to see your GP. You may have to change the way you approach your appts with what you've said, and take more of a lead with things, asking what might be suitable for you and what to start trying first. You could suggest to your GP that they have a look at the NHS Choices pages about FM to give them an idea, esp about the meds.

Anything you're unsure of, just ask on here and we'll try to point you in the right direction, then hopefully you'll be able to do the same with your GP and start getting the treatment you need.
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