New to Fibromyalgia

No Debs, I have not been tested for lupus. I only have fibro (well since the 1960's)

And apart from that I do have arthritis in hip and spinal stenosis, which is nothing to do with fibro and doesn't bother me much if I am carefull what I do. I do have a painfull elbows at the moment which doc said is tennis elbow, but I am more certain it is stitches elbow as I have had a lot of cross stitching to do lately. Lol

I guess I am lucky in that come what may in the past I have had to look after house and kids and work as well along with my husband who also worked full time. One if the older generation who was bought up to just get on with it! and it has kept me positive all these years. When I have a bad spell I take it easy and take the tablets. I never clean windows as I know repetitive actions will end up making my arms scream!! But I still make my own bread 2/3 times a week although now have a machine as cant kneed dough anymore thanks to fibro! And always make my own biscuits. Plus a couple if chocolates and a big glass of good Shiraz on an evening. Probably doesn't help but, hey, who cares

Val x

I do not feel as if I have been out of order with my comments, just honest. We all have had traumers in our lives but dont list them all. The only reason I spoke of my suicide attempt was to explain the reason why it is difficult to take tablets. Most of your ailments are related not just to Fibro sufferers but to anyone going through pain. I would be very suprised if anyone suffering from a lot of pain didn't grind their teeth. Thing is Debs some things dont need to be expained as most of them goes with the territory.

I will not be posting anymore comments on this site. Thought it would be good just to have a normal conversation with people who understand the problems that go with Fibro. It has been like sitting in a doctors surgery for days (not for me)

Good bye all.xxx

Twiglet,,,,,,

I just find you telling me I am a hypocondriac and attention seeking offensive and uncalled for.

Everyone else on here has described their health issues/problems. But, you have singled me out.

perhaps, I have given too much information. But, i'm only being honest..

Everyone is different.

I only see my carers everyday. The only people I can have a conversation with.

I've been Bipolar for 5 years.

I've not been on a forum before now. Maybe i don't know the rules??? I don't know. I'm just perplexed by your reaction.

Val, Nothing wrong with a glass of wine and some chocs!

The smell of freshly baked bread and biscuits, must be lovely.

I've given up wheat/gluten and yeast..

I have a wonderfull cleaner once a week.

I have had the slipped discs in my lower back, since my last pregnancy, 22 years ago.

I had to bring my 4 boys up on my own. The pain has slowly got worse.

If, you don't mind me asking, what medication do you take?

Debs x

Amitriptylene on an evening, for fibro (doesn't do much for sleep though) and just before bed I take co-codamol, paracetamol and (sometimes) diclofenac depending how bad my back is at the end of the day but the painkillers are for arthritis and back not for fibro. I also do reiki for myself every day and just get on with things.

I don't think Twiglet singled you out or me any to.just that she probably felt same as me and thought this do rum was just for fibro.

Val

Sorry, some of the words are not coming out as I had typed them!! My iPhone s eems to be very slow at typing at the moment! Should say 'forum' not 'do rum' ha ha

Val x

Hi Val,

Fair enough. So, we should only talk about Fibro, and no other conditions?

Most people have mentioned the other conditions they also have.

How long have you had fibro for then? Did it take a long time to get your diagnosis?

Have you tried any other medication for it?

I was on amitriptylene, years ago, didn't find it much help at all.

I'm on seratonin uptaker, and I think that helps, as we can lack seratonin.

i can't spell this morning, so tired!!

I've had no side effects with the Lyrica.

Debs x

Hi Debs .... I was diagnosed with fibrositis (the old name for it) in 1964/65 whilst serving in the British Army - by an excellent doctor who gave me good information on the condition ... After marrying, looking after children and working etc ... I realised the pains were not going away for long and flared up whenever I used muscles etc .... we had an excellent rheumatologist up here in the North East who was also a professor and he specialised in fibro - not many of them about here in UK ! .... I went to him and he again confirmed the previous diagnosis and said it is now more widely know as fibromyalgia syndrome ... he ruled out other things like the back and hip problem as they are seperate to the fibro ... he suggested the amitryptilene as it was supposed to help with the poor sleep , but it is many years since I have woken up refreshed !! Must be wonderful eh ?? .... I see no reason to take anything else for it as I have managed all these years to carry on regardless .... and leave the painkillers for helping with back and hip ... as I am a Reiki master/teacher, I also do self reiki and meditation and that helps .... but I am never depressed and always positive - my glass is always half full, never half empty lol .... but I know that many folks do suffer depression of one kind or another ... Professor Daymond said FMS symptoms are very much like CFS (chronic fatigue symptoms) but fibro folk usually get it after some kind of trauma (I had damaged my back way way back!) whereas those diagnosed with CFS have usually had a virus and for some reason do tend to get depression more ... but depression usually comes on probably because of all those folks have to put up with, it is not a symptom of CFS....

No, I am not saying only talk about fibro, but if those affected with fibro also have depressive illnesses, it is not always helpful to know about all the other things folks have as then some tend to link them to fibro or blame fibro, when it is not connected and really doesn't help with depression ....

My self help group is quite small and not always busy but it is a place for folks to come on and say they have a bad few days etc and we can all empathise with that .... we also make sure that we chat to each other about non-medical things and often have a good laugh.... and I think that will help some folks more including Twiglet ....

Val x

Hi everyone,

Here's hoping I can ask you some advice from people who know what FM is like! I've been finally diagnosed after years of going backwards and forwards to the hospital, a common story I know. I'm a mum of two young children (2 and 4) and starting to find the FM is taking over my life! My GP has told me to take painkillers sparingly in case I give myself headaches (!) but i'm struggling to even get down the stairs in the morning, and doing that carrying my daughter terrifies me! Pain is my main problem, along with stiffness and pain in my shoulders. I'm back at uni and finding the moment I sit down at the computer my shoulders start.

Has anyone got any good advice? I know I need to go back to my GP and ask for a better plan but I want to go armed with good advice from people going through the same! I already take Sertraline and Adcal D3 (cos i also have low vit d).

Thank you xx

Hi Laura, one of the hardest things to do is to NOT let fibro take over your life ... yes, painkillers taken too often certainly can lead to headaches !! Do you have any other problems apart from fibro, which could account for any other pain you might have? If you read my previous posts you will see I have had it for many years .... it is sometimes better to be diagnosed properly by a rheumatologist, especially one with experience of fibro, rather tahn a GP ... a specialist will also have more time to talk to you and go over any other possibilites. I know it can be difficult when bringing up children as I have gone through that and lived many miles away from my family so had no help at all and just had to get on with things ...

I take amitriptylene on an evening as it was supposed to help get restorative sleep - but that doesn't work for me! I only use painkillers when my hip and back are really bad and they have nothing to do with fibro ...

Val x

Hi Val,

Yes, I was diagnosed by a Rheumatologist, and my GP is excellent generally but I don't seem to be getting through to her about how difficult this is making things for me. I'm aware of the rebound headaches caused by painkillers but of course it's a balance between headaches and being able to move! I take Ibuprofen on and off when things are really bad but it doesn't seem to do an awful lot!

I don't (thankfully) have anything else causing the pain, and am actually a really healthy person otherwise, I can't complain really. Just want to be able to get on and not feel like I'm 80!

Thanks for the advice

Laura x

Hi, everyone, I have been on and off this forum for several years along with one or two others. We have discussed many conditions to do with fibro and many that aren`t, also any other problems we may have with our families, and life in general, so I don`t think you need to look on this as a place for just fibro! However if you have a definite query to do with fibro only and don`t want to join in the general chit, chat, which I have to say does help to get things off your chest as they, say you can start a new thread and just discuss that.

I hope that everyone can get along, and I`m sure that no offence was really meant. Just general chatting about our problems especially for people who are alone most of the time, can make a difference to a good day or bad day.

There are so many conditions which are linked to fibro and it can put your mind at rest just to know that someone else suffers the same as you. Hope to see you all back on here and finding it of some help.

Linda

Hi Linda,

I'd just like to say Thank you for your comments. I've been quite disstressed actually and don't really feel comfortable now on here.

Laura, Hi, Ibobufen won't really help as Fibro is not a flammortary disease. I do know how hard it is to bring young children up, when you are in a lot of pain.

If your GP is not very helpful, perhaps you could go back and see your Rhematologist again??

I've had to educate my GP over the years. and she did ak me too. I've printed off loads of stuff for her to read and she is very supportive.

personally, i'm on Lyrica. it is now reccommended for Fibro. i can't spell today...sorry.

I'd say do as much research as you can. Listen to your body. The more you push yourself, you will suffer for it. If, you can get anyone to help with anything, Then do.

Everyone, deals with things differently, you have to try and find what works for you.

Debs x

Hi all.

Just thought I'd tell you about FMA UK,

There's lots of help and advice on there and forums.

You can also ask them to send an information/medical pack to your GP.

There's advice on benefits too.

And an advisor you can email, who will help you fill in the form for DLA in the correct way. As this can make the difference between you getting it or not. The questions on how it affects you, should be, for your worst days.

And for help with appeals and tribunals.

You are entitled to claim DLA for Fibromyalgia. So, everyone should try.

They very often refuse you at first, so, just keep appealing.

I photo copied my form, before sending it off. So, I have a record of what i put on the form.

Debs x

Hi all,

I have just read through this thread and will emphasise what paddy has said. These forums don't have to be specifically on the subject matter, a lot of our users just use them for general contact with other users in the same situation and can cover a wide variety of topics. I normally try and keep up with all new posts but have been very busy lately so sorry for delay in posting here. If anyone feels a thread is going "off topic" then as paddy says a new thread can be started for specific questions etc. I won't remove any comments from this thread now but if anyone is feeling "picked on" or being abused please message me and I will try and intervene. The other thing you can do is click the "Report" link which alerts me to any posts that need looking at. I do check for these several times daily. As per our T&C if someone is getting abusive no matter what the circumstances we will deactivate accounts as required.

Val - I did send you a message but if you want to post your forum website just include it in a post. It will go for approval but I do check these every day as well.

I hope this helps and reassures users but if anyone has any problems or questions please message me.

Alan Emis Moderator

PS the FMA UK site can be found here http://www.fmauk.org/

Debs,

thank you for that info, it's really helpful. I've been discharged by my Rheumatologist and am going back to see my GP soon - if I get nowhere there I'll ask to go back to him. I've read a lot about the benefits of Lyrica so that will be my argument, anything's worth a try right! The pain killer thing is tricky with this - I keep being told (by my GP and Rheum) to take Naproxen or Ibuprofen, both of which are anti-inflammatory, which makes no sense at all to me! No wonder they don't do anything! It is tricky with the kids as my husband works away 3 out of 4 weeks and I have no family close, but it won't defeat me! Haha

Thanks for the info on FMA UK too, I'll take a peek.

By the way has anyone any experience of going on a gluten free diet for FM? I've read a few things about that too but I'm not sure whether it's the usual online rubbish! And how about giving up caffeine (which would probably destroy me!)

Thanks all for the advice and sorry for so many questions.

Laura xx