Awaiting referral and diagnosis - Fibromyalgia Acti...

Fibromyalgia Action UK

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Awaiting referral and diagnosis


Hi everyone.

I have been feeling unwell for a number of months at first they thought it was my thyroid as my blood results were out of sinc. Found I have a nodule in the process!! Anyhow apparently nothing unto ward there. Since sept last year I have been exhausted, I ache everywhere legs hips arms shoulder neck as though I have flu. My memory is shocking I lose my track of thought easily suffer insomnia and headaches (one lasted four days). Up until October I was fit healthy exercised 4 times a week so I know the pain I experience isnt workout relate as ibrofen paracetamol doesnt even touch it!! My gp has stated that if my next set of bloods come back ok its a referral to a rheumatologist. I know I haven't got arthritis as have had the bloods done but they have mentioned fibromyalgia or me. Can anyone give me advise on what to expect. MAny thanks

13 Replies

Hi trayb1301,

Welcome, sounds like you've come to the right place. Sorry you have been feeling so unwell, it sounds like you have your GP on side though. The rheumatologist will be best placed to diagnose and decide if it's Fibro you have, as there is no specific test and your GP certainly sounds like they have done everything to help narrow it down. There is lots of useful information on here, with links to help answer any questions you might have. Everyone is really friendly and happy to help if they can. Is there anything worrying you right now? Xx

Hi and thank you. The only thing bothering me right now is trying to get a diagnosis. Alot of people think even though they dont say it, is that its exercise related that ive pushed myself. I cant push myself very hard since I feel so rubbish. Yes I still try and exercise but its gentle and for a while it takes my mind off it and relieves some of the symptoms. Im worried that I won't be taken seriously. My gp has put me on anti depressants and I am trying to persever with work and two kids even though I wake up ever morning feeling rough as though I need ever part of me unwinding and stretched back into shape its very hard to explain .

Hidden in reply to trayb1301

Well, you can tell them quite confidently that it is NOT exercise related. The pig about Fibro is that it can knock you off your feet irrespective of who you are, whether that's a couch potato or an Olympic athlete. It's probably more keenly felt mentally in some ways by people who have been very active, as suddenly you find yourself unable to do the things you took for granted, but that's not to say someone who wasn't active before suffers less, it's horrible for us all. However, you are right to try to keep up with exercising, as long as you listen to your body, keep it gentle, pace yourself and stretch lots, with lots of warming up and warming up and warming down, it's one of the best things you can do. But, if you can't, if it's too difficult, don't beat yourself up, no pain, no gain does not apply! Be gentle with yourself and learn to listen to what your body is telling you.


Hi trayb1301

Firstly, welcome to the site and I sincerely hope that you find it as useful as I do. I can relate very well to what you have written as it nearly mirrors my experiences. As soon as I got my diagnosis my GP prescribed Nortryptaline for the pain. I started on a low dose and she increased it after a month. I must admit that it has had some desired effect but it is not 100%. I still get quite bad pain and my Fibro has expanded to other areas.

When you get your diagnosis you could ask your GP to send you to a pain management clinic as they can go through all the options with you. I am so sorry though that you may have this illness but the site is really great and the people are wonderful.

Take care


Morning trayb,

Firstly I just wanted to say well done for managing the care that children require. I am a more mature lady and my children grown up. I absolutely adore my grandchildren but it takes me days to recover when they come for their sleepover weekends! :)

As far as your appointment with rheumatologist goes - s/he will ask you lots of questions about your symptoms so may help to do yourself a list in case your brain decdes to do that awful fibro trick of not working terribly well and making you forget what you wanted to say!! :) My rheumy pressed certain parts of my body (OUCH) which helped him diagnose fibro, tho I also have lupus.

Take care and good luck with the appointment. Let us know how you get on. xxx

Hi there so sorry to hear how you feel, I have been there done that! 15 years ago I got diagnosed with fibromyalgia. Not a nice disease, you get exhausted very easy and sleep is a problem and you never wake up feeling grt. what I have learnt is that you do need to be kind to yourself, have plenty of rest, hard to do with children, prepare meals etc early in the day allows you to slow down when the children are home, your meds will help and a gentle massage from your husband before bed may help not overdoing things it is manageable and eventually you may go into remission. I wish you well.

Hi trayb1301,

you have come to the right place, I joined recently and have found the folks here really knowledgeable, helpful and ever so friendly.

wishing you pain free days :-)


Thank you everyone.

I should get my bloods back tomorrow so hopefully will have a telephone appointment with my doctor and get a referral. Can I just ask a couple of questions? Does it ever die down so you are pain free once in a while and feel semi normal? Will it improve once the weather warms up?

TheAuthor in reply to trayb1301

Hi trayb1301

I am so sorry but that is really difficult to answer as everyone appears to be different. I personally get some good days but unfortunately they are in the minority. I must admit however, that the cold does exasperate the pain somewhat. My Nortryptaline also helps ease the pain.

Take care

Ken x

Hi everyone

Got my bloods back vit b all ok vit d slightly on the low but not to the extent where I ve been in pain... so off to the rhumatology dept I go...lets see how long for appt!!

Pretty well the same as everyone else. Vit D is a good test to have. I was deficient but that wasn't my problem either. I was diagnosed less than a month ago so we're in a similar place. I won't say the same as we're all different :) Weather should help a bit. Arthritis is exacerbated by wet weather but I think that's more low air pressure and temperature. It may take a while to find meds that will help. I'm on an antidepressant too. Loads less than for depression. Similar to Ken's, mine's amitriptyline. been on it a month and little effect. so patience is definitely a virtue. Where's the insomnia coming from? if you've been active and more or less ground to a halt, you're possibly not making your body tired enough. I have a combination of that and pain wakes me up. Trouble is I can't get through the day without a nap. I used to cycle pretty well daily (I don't count my commute, it's not far enough) but had to progressively have more lie down in the afternoon. :(

Apart from endorsing all the above, Welcome to the site. do please tell us how you get on. Your best medical friend is a GP who's on board about fibro. It's one of those conditions where so many outsiders are in denial even though they're well placed not to be. Gentle hugs :) :)

trayb1301 in reply to fenbadger

Hi. Just waiting for my appt now. Dr is getting me the first available one. Im having trouble sleeping or getting to sleep as I cant get comfy my legs feel restless and I know im tired but can't drift off!! I've been put on sertraline but im not sure if thus is right for me ive heard that it can make you put on weight and thi is the last thing i want to make me more depressed and stressed!!. I just want some answers now. I've never been a sickly person, stressed yes but I've always overcome what has been thrown at me which has been more than some less than others!! So I do find this whole thing frustrating for being in a way held back!! Hope you are finding your way forward since diagnosis.

fenbadger in reply to trayb1301

Hmmm. It MAY be simply that it gives you an appetite :) And that's for you to control by saying "no".

Hey, there is light at then end of the tunnel, it just gets turned off sometimes to save fuel.

You're clearly a tough cookie and if my experience is anything to go by there's lots that can be done. It was a great relief to get a diagnosis because I could then start planning a coping strategy. This last few weeks talking to other fibromites and GP who's on board is ok too. I think if you present a positive face the person the other side of the desk is more willing to help. A hopeless cause must be pretty demoralising for them, too. Try where there's loads of info on medicines. Beware though, too much information can be overwhelming.

More hugs :) :)

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