Hi, I meant to introduce myself earlier!

[silentlybroken]

Hello,
I'm Sarah and I'm 25. I've been suffering with pain problems since I had whooping cough and pleurisy followed by glandular fever, so from about 17/18 years old. I've always been fobbed off with the usual it'll go away and get over it sort of thing from doctors and my family. Even when the pain increased at the age of 21, the GP again told me it was nothing, gave me pain gel and told me it'd get better in a couple of weeks. Ever since then it's just slowly deteriorated further.

Luckily for me last year I found a GP who would listen to me and told me that it looked likely I had Fibromyalgia but they'd rule out MS. I had no idea what Fibromyalgia was so I googled it (as you do) and just went down the list of symptoms realising how many of them matched all the medical issues I'd been having for years.

So that's the up-to-date. I'm on 50mg amitriptyline, 15/500mg co-codamol, eye drops, stemetil for dizziness. I feel like I rattle sometimes! I'm also profoundly deaf and have autistic spectrum disorder. I have an appointment with rheumatology next wednesday for confirmation of fibromyalgia. I'm absolutely terrified about it in all honesty.

I'm currently out of work due to being forced to move house, which I thought would help my pain levels but due to moving of course it hasn't. My family do not know I have fibromyalgia, but my boyfriend does and is incredibly supportive.

I am a turtle and bee nut due to certain nicknames. I think I'm rambling a bit much so I'll shush now, but hi :)

[FluppyPuffy]

Sarah and to the forum

Your route to finding out that you have FM is similar to a lot of us, years of being told to do this, take that and it will get better soon, only to find that it doesn't get better until we find that one person who listens and points us in the right direction to find out what is wrong with us. Hopefully when you see the rheumy, you'll get somethings confirmed and then be able to start taking steps to get things more manageable for you

Can I ask what it is that is that is terrifying you about the rheumy appt??? I'm not being nosy or anything, on here there is a lot of info and advice, and if you feel able to share why you're so scared about it, we may be able to come up with some ideas that could help you feel a little less concerned about things.

It's good to hear your boyfriend is supportive, it makes a huge difference having someone who is


If there's anything you want to know, just ask and we'll try to help you with it

[silentlybroken]

Hi, and thank you :)


I'm terrified because after being told for not far off 10 years all the pain and other issues were made up by everyone, I'm worried the rheumatology consultant will say exactly the same, even though I'm in debilitating pain everyday and I know it's not made up. Sometimes I wonder though because I've been led to doubt myself for so long. It's also a hospital that I've never been to, so the Autistic Spectrum Disorder plays up there as I panic I'll go to the wrong place etc. Mainly it's I'm so worried I'll be told it's nothing. I have had MS ruled out already which is a small positive.

My boyfriend is fantastic, making a real effort to understand fibromyalgia and why I'm struggling so much. He's been great with all of my disabilities, he's a real treasure and I'm very lucky to have him.

Currently I've been keeping what I refer to as "my little book of fibro" where I list my symptoms that crop up and the meds I've been on and am taking as well as suggestions from the FB group I'm in that I can talk to my doctor about. My main problem is I don't have a specific GP and the ones I seem to keep getting are adamant that my co-codamol cannot be upped even though the lower strengths don't do anything for me. I know I cannot get addicted to codeine (a small mercy in this) but they still refuse on those grounds about addiction and refuse to believe me.

Again with the rambling. I'm still very new to all this, and I realise my pain levels are nowhere near as high as some, but I'm finding it very hard to come to terms with.

[FluppyPuffy]

Don't worry or think that what your pain feels like isn't as bad as anyone else's. Altho pain can't be measured, knowing how we have felt when someone describes a particular level or type of pain, it means that we understand how you are feeling.

It certainly does make a difference having someone who tries to help and understand, I've got one like this, and I know I'm lucky to have him as I've not been the easiest person to live with

Will your boyfriend be going with you to see the rheumy?? If not, is there someone else who can go with you, as having someone there for moral support, who can remind you about things you may have forgotten and to help remember what has been said can all help make your appt that bit easier to deal with. Take your "little book of fibro" with you to your appt so you can refer to it if needed or even let the rheumy look at it to try and get a good overview of how things are for you.

WRT the hospital you're going to, have you had a look online to see if there is some sort of map/corridor plan or something similar to give you a general idea of where you need to go for your appt. Would doing something like that help make things a little less daunting?? It's not easy to guess what the rheumy will say and do during the appt as they all seem to have their own approaches. I don't think you'll be told it's in your head or that you're making it up tho. You may have the FM dx confirmed and then be discharged back into the care of a GP. Or you could be referred on for different treatments/therapies/pain management courses/clinics to try and help you with managing your FM, it all comes down to what is available in your area and what the rheumy thinks could be of help to you.

As for a GP, you could ask someone on the admin side of the surgery if there is a GP who deals with or as some experience of treating patients with chronic pain and fatigue conditions. If there is one, it would give you the chance to see the same GP each time which will help with treatment and things as they will know you, your condition, what you've been doing/trying etc etc. As for meds, there are others, stronger than your current ones that can be used in FM. This linky tells you about some of the different types used http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx If you went to see your GP with some suggestions for different meds, they may consider giving you something stronger and more effective to try.

I've waffled at you for enough tonight, time for

[Andrew_Z]

SBee
It's absolute rubbish if anyone acuses us of making up symptoms. How could we possibly know what the symptoms are before we even discover what they are likely to be!

[silentlybroken]

Thank you so much for all the information FluppyPuffy (great username by the way), it's really helpful. Unfortunately my boyfriend won't be as he's in training for his new job and cannot take any leave (and he's down in Exeter a good 3 hours away! ). The only other person available would be my mother but as we are currently trying to move to London everything is a bit haywire and I actually think she's supervising Pickfords packing up the van on the same day. She has offered to trial run me to the hospital so I'm a little less anxious as she understands with my ASD it can be a nightmare with anything new especially with me being so ill lately.

I actually left a complaint about the hospital I'm going to see, as when I tried to sort things out by using their website I found the lack of information about anything made it useless. What information there was, was very vague as well. I did get an apology from them, and told to provide my DoB so they could explain it to me, but as yet I have not received another reply from them.

I'm hoping when it comes to my useless GPs, the move to London can help that. I'm very glad I didn't have to postpone my rheumatology appointment, as through other people I understood the most likely case would be diagnosis from the rheumy and discharged back to my GP for further care. I was worried that I'd have to start the whole process again with a new GP and another two month wait for the rheumy!

Thank you for the link, I'll have a good look at it. I'm currently trying to eat healthily and stay active (without overdoing it) to see if these help any, but I'm heavily reliant on my amis and co-codamol to half function.

I'm so good at waffling, eek!!

And exactly Andrew_Z. I also get the "you sit at your computer too much and that's why you hurt", which is absolute rubbish. I sit at my computer because I'm in too much pain to do anything else!

[Andrew_Z]

Actually, Sarah, sitting at my computer, or sitting anywhere for more than ten minutes, then trying to get up, causes severe pain in my legs and hips. Lying on the surgery couch also extends the pain, on standing, to the muscles in my rear end...so your critics are probably partly correct, but only if someone has FM.

[silentlybroken]

Yes, I realise this. I can't sit still for any length of time. I'm constantly changing position to try and find something more comfortable.

If I recall correctly, this is partially why we are so stiff in the mornings, yes? Because we've been in pretty much the same position whilst sleeping.

I'm still learning what is a good thing to do and a bad thing to do.

Unfortunately today is most likely to be a sofa in jammies day due to a very bad night.

[Andrew_Z]

Can't stop the pain, but what does help is to raise a seat by adding a firm cushion, as it is much easier to slide oneself an inch or two down to the floor than push up from a chair.

[FluppyPuffy]

Sounds like you've got everything happening at once Sarah, I do that sort of thing as well, then end up in a heap in the corner Maybe I'll learn from my mistakes at some point in the future

If you want to, it would be nice to hear how you go on with the rheumy. Good luck with your move and boyf's new job We're always around if you want to know anything, or just put your mind at ease about something that is bothering you

[shazq]

to the forum Sarah