Fibromyalgia

[Lesleyjay64]

Hi everyone, iv been diagnosed with fibromyalgia in January this year, this is my first time writing on this site, but I am just fed up with the constant changing of medication to find something that actually works for me, one of the locum drs at the health centre I go to was adamant I had lupus and sent me off for blood tests that came back negative and an appointment with a rheumatologist( who was very rude, and I had to make a complaint about) who diagnosed fibromyalgia. My sister had SLE and died many years ago of complications, she was 29 and at the time was one of three people known to have this ilness in Europe.

I am currently taking oxycodone for the constant pain in my joints, my fingers, and most everywhere, the tops of my arms where the muscle is constantly feels bruised and very sore to touch, I am generally unwell, very tired and ache all over, I constantly get very bad mouth ulcers and even get them inside my nose, I have recently been given duloxetine to help with the pain too, but it seems to have made no difference at all, I have very low vitamin d levels and was given chewable adcal that make a slight improvement, I am so fed up and feel totally let down by the health service, I feel like a burden to everyone and I'm sick of being in constant pain, it feels like my normal gp doesn't know what to do for me, I had a second opinion from a colleague of my rheumy, he didn't examine me just said it's definitely fibro because my blood tests are normal, I am sure the doctors just want me to go away and I feel like I'm a nuisance and have stopped telling them how bad I feel, I'm sorry for ranting on but I really am fed up and no one understands....

[bam1993]

Hello Lesleyjay64......just to let you know I really DO understand how you feel.....I have been there myself!!! As I am sure a lot of people on this website have-it is quite unusual to hear of someone getting a diagnosis straight away-we usually have to 'fight' for it-very wrong, but sadly very true. When I look back my symptoms started in puberty, at around the age of 10-growing pains that my friends just did not have....and then really started showing around 1999/2000 when I was about 40-but they waxed and waned and I was finally diagnosed in early 2012 ...(this is after being told by St Thomas in 2010 that it was 'fibro'...since diagnosis I have done a lot of reading and still get angry with that Dr at St Thomas (did email him to make sure that he knew-even it only his secretary saw it!!!).....as really ALL of the signs were there that it was Lupus-my Mum is a type 1 diabetic-and my Paternal Grandmother had RA-both auto immune-so I have these genes from both sides-I had been hospitalised with pluerisy/pneumonia in 2006/7 all of this the Rheumy at St Thomas knew, all classic signs-plus my history-but because it was as I say waxing and waning-and I was absolutely fine at other times he said it was 'fibro' (I suppose my bloods did not show it at the time-but history does come into a diagnosis as well) Finally by 2011 it was constant, and i got a diagnosis at Chase Farm, but it has been a quite a downhill slide since. (I have now also been diagnosed with AIH-and am seeing a new Heptoligist on Monday at a different hosp)-hopefully then I will finally start seeing light at the end of the tunnel-at the moment I am just on steroid, but am hoping there will be a plan to really start treating things. I too feel very let down by the NHS-I feel I would not have got this bad if I had been treated properly earlier (I am sure the Drs would argue and say that Lupus is so unpredictable-but some sort of preventative measures would have, I am sure, stopped me getting so bad!! ~ANYWAY now back to you....Keep a diary of every symptom, write it down every night, what sort of day you have had-where it has hurt-how tired you have been etc-badger your GP-DON'T let them fob you off-take someone with you to your appts and ask for second opinions!! Write a list of all symptoms over the years - take it to all of your appts-see a different GP at your surgery if possible (this is how mine was found in the end-my usual GP had told me to 'scrape and brush my tongue' on the mouth ulcers that I had had for over 8 weeks (at the time I could barely eat) and put up the Gabapentin from 300ml a day to 900ml (I did not do this as this tablet was making me vomit!! I now no longer take it) If you have mouth ulcers at the moment it is likely that your Lupus is really flaring and it 'should' show somewhere in your bloods-ask for more blood tests-and take someone with you who you know will fight your corner!! Don't give up-a lot of us have been there and do understand what you are going through....try to keep strong (even if it is only in 'spirit') and I wish you well....Julie x

[Iona467 in reply to bam1993]

Hi, I have both Lupus and Fibromyalgia. My GP does not want to give me anything for the pain, maybe because I have had a year of being on constant antibiotics and 2 emergency trips to hospital. I have a bad back and now have nerve pain 24/7 so now on Lyrica. I asked for pain relief and the chemist ones do not work so in pain all the time on top of the nerve pain. Just what can I do?

[misty14]

Hi Lesleyjay

I too can fully understand the problems your having re diagnosis. The trouble with Lupus is despite having symptoms it doesn't always show up in blood tests which is what has happened to me and I suspect you as your still aching and unwell despite the painkillers. If it was Fibro they would have worked. You need to find a Rheumy who understands this as they would be more willing to treat you. Has your GP tried an Anti inflammatory painkiller?. This would help see if your symptoms are inflammatory based. As your previous correspondent said we usually have to fight for recognition over many years and it's what I've had to do!. Good luckX