Anyone suffer from fibromyalgia

Please note that I am going on this via 3rd party and it's only what I can recall from conversations so don't take it as 100%.

My friend works for a thyroid specialist and she often says they see cases where people have been diagnosed with Fibromyalgia and actually they have a thyroid problem. So, my first question would be have they checked this and if so do you know what blood tests they have done (i know there's a special one that she says a lot of GP's don't request and it's the most accurate).

As I say this is very much third hand but it may be something to look into yourself.

Hi Poochanna,

I had a full blood test done last year and I do remember they tested my thyroid but might be worth asking to get tested again. Thanks.

Hi PG, I've been wondering how you have been this past few days. Please make sure you get another appt with another GP, I know they are busy but opening the door like that just isn't nice or right. ?

I asked her some advice about this on another thread a while ago and I can't recall it exactly but I know she said the most accurate way to test is to do it over a series of days as it can vary a lot. We talk about it a lot as she is convinced I have a Thyroid problem and even though my GP has tested she said they didn't do this particular test (she called the lab to get my results).

It may be worth a google to see what you can find out.

My mum has fibromyalgia and they think i might have it too. For my mum her pain was all in her legs and knees too. They prescribed her a very strong pain killer, i think it was diclofenic, and anti-depressants which used as a sleeping aid. She was also advised to take nytol or similar, and now takes the herbal kind, i occassionally use the anti-histamine kind. She has improved hugely since last summer, when like you she could barely walk and was in constant pain. She was signed off work for four months whilst she started the medication and got it under control and slowly increased the work load, and she's now up to four days a week. She finds if she does a full week its too much for her. The doctors also said it can be caused by a traumatic shock, and stress can make it worse because it affects your sleep cycles so once she took it that little bit easier she found she was a lot better.

Have they referred you to a physiotherapist? they offered my mum this, but my MIL is a physio specialising in fibromyalgia so she just saw her a couple of times. They also offered my mum counselling, and she went twice but felt she didn't want to continue with that.

maybe ask for a second opinion. People don't take it seriously as a 'real' illness, but it really is, and seeing how ill my mum was last summer you have my full sympathy.

Poochanna thanks I will do some research.

Pinkjay thanks I'll drop you an email when I go back to the docs.

DWC you've nearly made me cry saying people don't take it seriously as I feel exactly like that. I'm so flipping emotional this week which is unlike me so think the pain and lack of sleep is just getting to me. Unfortunately I can't be off work sick as my sick record hasn't been great and got pulled up for it. Amitriptyline in larger doses is an anti-depressant so I wonder if it's the same medication your mum had. I've been taking cocodamol for the pain but since that isn't working I got the tradamol but I'd rather go on a weeks binge drinking session then take them as they leave me with the room spinning and wanting to throw up.

No mention of a physio but I could refer myself to one through work so thanks another thing to consider. My GP provided no information at all on the condition so I've been googling and the symptoms I've been reading are exactly like mine.

When Monday comes and I need to get up for work I just pray for the week to go in quickly for a long lie at the weekend and that's a pretty depressing way to go through each week.

Thanks for the info.

My colleague suffers with this and I know from working with her how debilitating it can be.

I know that she taks amitrip at night (not sure of the dose) and she also takes all kinds of things (strong stuff) for the pain. She's on holiday at the moment otherwise I'd ask her tomorrow.

My friend has said that she has had to alter her total approach to life as doing too much and stress are massive triggers. She tunes out stressful situations and is the calmest person I know. This is because she has to be. If she lets herself get stressed or does too much her whole body can go numb up to and including her jaw, causing her to slur her words.

Not really much I can add, but my mum as Fibromyalgia and it affects her badly, she has awful pains in her head that actually can stop her from lifting her head without agony.

The best thing my mum has is a Gp that understands and cares, my advice would be to change GP, you really don't need someone that stresses you out.

There are a few of us here with long term health problems, so there are plenty of shoulders for you x much love x

I meant to add as well that my friend has accupuncture every two weeks and she says it really helps. She had a referral letter from her GP so that she could claim the cost back through Westfield (health scheme thing).

Thanks so much. Actually knowing I'm not alone is a relief as it's hard to understand how I can be in pain when I've done nothing so really did begin to wonder if it was all in my head even although I knew it wasn't.

I think I'll have a early night and see if I can get to sleep and if not I might resort to the sleeping pills.

?

I was diagnosed back in febraury this year and was really bad at the time, could barely walk, stairs were a no go, my hands were agony driving and my back felt like I was being stuck with pins... not surprisingly my work was suffering and I was getting to the stage where I thought they were going to sack me (I'm a contractor so no problem with just cancelling my contract)

I was put on amitryptaline 10mg a night and diclofenac 50mg 3 times a day on top of the paracetamol and zopiclone I was already taking, I also got referred to a sleep clinic and started seeing a physio

as soon as the weather got warmer I felt marginally better - mine does definitely seem seasonal as I'm (touching major piles of wood) ok at the moment, I've started going to the gym again and although Im knackered beyond belief most nights when I get in from work I'm managing full days...

I cant take tramadol - makes me throw up lots, same with codeine based medication so Im fairly limited to what I can take. The amitryptaline seems to be working and Ive managed to reduce the diclofenac to 1 a day at the moment, though today has been a 2 dose day and Ive just got home from a full body massage (she said my neck and back were really bad)

Have you seen a rheumatologist - mine is fantastic and was really sympathetic, your gp sounds like a prize nobber, although I appreciate at the moment they are probably overdosing on swine flu, they could at least have shown some sympathy.....

Gentle hugs heading your way - hope you get some sleep and feel more human in the morning (though if youre like me, the mornings are the worst)

Hi I'm still here but in bed waiting on the med's kicking in.

Luckily my hands have been ok but if they get sore then I really will scream. I had sciatica 2 years ago and it seems to have all started since then although I never thought much of it until tonight.

It's Zopiclone they gave me but it's awful. I sleep for 3 hours max but then am so drowsy all day I may as well not have had 3 hours of sleep.

My mum suggested asking to be referred to a rheumatologist so I'm really glad you mentioned that. I'm not very good at asking the doctors for anything but I think I might need to be a bit more vocal from now on. I don't even know what they would do so another goggle one.

I love codeine medication (possibly too much) but I've been on it that long it doesn't have the same effect now. Morning are the worst yes and I'm sick of people saying staying in bed until 1pm is terrible and such a waste of a day! Eh well when you struggle to move the day is already wasted. It isn't even that I sleep all that time but just lying down is a relief.

Thanks

Oh you poor thing. ?

I would DEFINITELY be pushing to see a rheumitologist asap. Have you seen any kind of specialist at all?

Resisitance to drugs does sadly buld up. What codeine are you on?

Staying in bed until 1pm? Ignore the numpties and tell them about someone you know online who stays in bed until dinner time, then goes back to bed afterwards at least 4 days a week. ?

? MF is right, there are lots of us and lots of shoulders. xx

Hi Mrs Magic,

No no specialist, do you think that could help? GP never offered anything, just seemed to diagnosed me on where the pain was (like everywhere), length of time I'd felt like this and the extreme tiredness.

Solpadol is 30/500mg. It never really took the pain away more just made me floaty and dizzy that I didn't care as much.

I've been reading your posts and my heart really does go out to you. I actually wasn't going to post after reading your medication list because in comparision I take nothing. No wonder you stay in bed until dinner time on the meds you are on.

? so much

Lx

Out of curiosity then, who diagnosed you... My GP suspected it was either fibro or Rheumatoid arthritis but couldnt work out and after sending me for xrays and blood tests, she was none the wiser so sent me to the rheumy, I didnt see the consultant that time but he did a full body check, more xrays and more bloods, he also confirmed my physios diagnosis of hypermobility, he was suprised my GP hadnt put me on amitrip earlier

Luckily for me I dont have a problem asking docs questions, Im fairly medical based in my job and my mum worked in a hospital (in the labs) years ago so were both fairly knowledgeable - she also suspects she has fibro as her rheumy has been bouncing diagnoses of RA and OA around for years not making their mind up..

Id love to stay in bed till 1 I dont get much chance though as I have a very active husband who drags me out most weekends to do something or other, he also isnt very sympathetic when it comes to fibro - is convinced its all in my head and Im making it up and just need to go to the gym more..... pah!!

Zopiclone seems to work with me, one gp I had tried to lower the dose to 3.75mg a night but it didnt do anything so it was back up to 7.5mg, then again some nights it doesnt work - most things that are meant to make you drowsy dont have any affect on me though, Im a hardened insomniac ? tried everything herbal, over the counter, etc etc before being put on the zopiclone and it seems to be the only thing that helps me sleep - even alcofrol doesnt work sometimes.... though (and I dont recommend this too often) zopiclone, amitrip and alcofrol together does work!!!

Im off to bed now but if you need more hugs, help etc give me a shout, Im on most nights and occasional days if I get chance to sit down at my desk at work....

?

Comes and sits on the poorley bench with you all

Hi, My illness is more Arthritis based but I also do get Fybromyalgia and the chronic tiredness that come with that, I never used to see the mornings and would be back in bed by 4pm every night, I had no idea how people could cook or clean a house when it took me every ounce of energy just to go upstairs

I even missed Doctors appointements as I was too tired to dress myself.

Im doing ok ish now, I take a whole heap of meds My fave being Anti TNF Infliximab(not sure if its used for Fybro but with Arthritis its a wonder drug)

Accunpuncture helps lots and I get it on the NHS

As o/thers have said it more now about changing your life and the way you do things, If I have a busy day I have to have a rest day and I spread my tasks into little chunks throughout the day.I always know when I have overdone it

I aslo found Cannabis to be fab during my really ill time as I finally relaxed(does nothing to help the tiredness though) but at least I got to sleep (my Doctors were all aware of this).I also do love Tramadol , it take some getting used yoo and Im scared im getting addictied to it but it really helps my pains.

Sorry you are having to deal with this.xx

I love shoes it was my GP that diagnosed me.

My H doesn't understand either but then I don't tell him much which I'm going to address at the weekend.

It's 3.75mg of Zop I have and can 2 of them but only took one last night and tonight cos otherwise I'll not wake up in time for work. I never used to have a problem sleeping, used to be asleep before my head hit the pillow so it's so frustrating now.

Tonight I've had 50mg of tramadol, 75mg of Amitrp and 3.75mg of Zop and still nothing happening. Although my co-ordination is going slightly now so hopefully..

I also find a nice warm bath helps before bed

Clodders your avatar makes me hungry and craving ice cream!

You have all reassured me so much and also made me realise to get answers I need to push my GP, ask more questions, do more research and don't be pushed into more drugs cos they can't be bothered to listen to my properly.

I think I'm finally sleepy so shall say night night now.

Thanks so so much everyone, wish I had posted earlier on rather than wait until I was at the crying stage with pain.

Lynsey x

PG it was amitryptaline my mum was on, but she managed to come off this in january time.

I'm surprised how many people here have the condition or know someone with it. My mum mentioned feeling all alone with it before too.

I Love Shoes, can i ask you what hypermobility is? i mentioned some knee pain to my MIL the other day and she said 'its because youre hypermobile' but i didn't know what she meant.

Hope you're feeling a bit better today PG xx

I had ME which is in the same ballpark. Definitely try to get to see a specialist of some sort, and one who knows about (and believes in) these kinds of illnesses. My GP would only ever diagnose mine as depression, with the stock answer "well, you would say that, you're depressed" if I mentioned other symptoms! Specialist diagnosed ME within about 30 seconds, so pathways to treatment opened as if by magic.

This is a useful link to determining hypermobility - I think I got 7 or 8 on the score..

https://www.hypermobility.org/beighton.php

not sure how your MIL knew you were hyprmobile if you didnt...

Thanks ILS. she's a physiotherapist so probably knows something i don't. I'll go and have a look at that site now x

Thanks everyone, you've really made me realise I need to push for further answers instead of just living in pain.

Today I woke up not bad but now in agony. I'm definitely not hypermobile as I can't do the things in that check list ?.

I've been sleeping for most of the afternoon so now trying to stay awake so I can sleep tonight.

Lx