fibromyalgia

[pixi]

I've had fibromyalgia since I was a kid, over 30 years now.  90% of the time I can cope with it even when its really bad, I manage to do a part time job and look after the house etc, but there are times when I really feel I can't cope at all (eg I get frustrated to the point of tears when I can't do something simple one day like pick up a cup of tea that I managed to do the day before)  Is there anyone else on AB who has it and if so how do you cope with the bad days?

[Robinia]

pixi - so sorry to hear that you're a fellow sufferer - the first I've met on here although Peri is currently looking into it as a possible explanation for her problems.  I've actually only been recently diagnosed in May, but it's been going on for years. Did you have it diagnosed 30 yrs ago? - where I am they've only just discovered penicillin I reckon!!

How do I cope?  Like you do probably, you have ok days when you wonder what you were miserable for last week & then, hey presto, it all flares up again & you remember exactly why it makes you miserable.   I think the best thing is to give yourself permission to have a bad day or week (hopefully not weeks although I've recently had a very long flare up) & only do what's absolutely necessary.  Much harder if you go to work so well done for coping with that.  My problem is that when I feel ok I go a bit mad & end up feeling worse again!  I love gardening & it's so hard to stop before you want to.  I find that the hardest thing is convincing other people that you feel so crAppy when you look fine & don't you just hate that 'It'll do you good to do such & such' phrase.  NO - it won't!! 

I'm sorry I don't have any miraculous coping strategies pixi - luckily I'm the kind of person who is very rarely bored so if I can't do anything lively I can find something to occupy my mind.  Apart from the 'brain fog' days that is!!  What a misery I must sound but I very rarely let it show that I am, most people just don't want to know. 

 Chin up pixi, do you have a support group in your area? I don't but my sister says I should start one!  I can just see us all on a bad day drawing straws to see who's going to lift the teapot!! You have to laugh don't you?

[Robinia]

Blimey, I hope you don't nod off reading all that, sorry if I've waffled on!!  :-o

[pixi]

Hi Robinia no I didn't nod off.  You  just about summed up how I feel.  I was diagnosed  about 18 years ago, when I was a kid my mum used to take me and my sister to the docs regularly and they just said growing pains, but it never stopped.  Like you when I feel ok I dash around like a loony, then pay for it a few days later. Sorry but I'm laughing about the brain fog - isn't that just crap.  My memory stinks and the confusion i get is terrible sometimes.  Even when the fibromyalgia is bad  I try not to let it beat me, I think thats why I end up feeling worse, yet I feel that if I give in to it and say dont carry that pint of milk from the shop, then eventually I'll end up doing nothing.  You are right about looking well and people wondering what its all about.  Besides the aches and pains and lack of energy, I also have IBS and get really bad headaches because of it, this probably does my head in more than all the other symptoms.  I'm laughing at your comment about who would lift the teapot, we'd probably have to hire someone to pour it for us.  I've found that laughter is probably the best treatment (along with smoking weed-naughty I know but it helps)  All the doc says is take your painkillers and wear your splints all the time. Hmm I'm waffling on now, I wonder if thats yet another symptom of it as well haa haa?  Anyway Robinia thanks for replying, if you are ever having a bad day give me a shout, I'm usually on here most mornings, probably best to find me in chatterbank.  Sometimes it makes things easier when you talk to someone who knows what you are on about, and good luck with it in the future.

[Robinia]

Hi again pixi - glad you can laugh too!  (oh yeh, I'd momentarily forgotten about my old friend IBS & raging headaches).  You're right it's so much better to have a grumble to someone who understands.  All the best to you too.

[Firiffic]

Hey guys!  I too have fibro and was diagnosed in 1998 (I am now 35 going on 36).  I have definitely learned to listen to my body and not to beat myself up about the bad days.  I am lucky that I have an extremely supported husband and mother and even my "pull yourself together" father has recognised how this condition has affected me.  I started by giving all my research to my friends and family so that they were abridged of the facts and otherwise I just explain that I have "arthritis in my muscles" which people seem to be able to get their heads round.  I do get cross with the whole idea that exercise makes you feel better because that has certainly not been the case for me and initially it would set me back  days and weeks if not months if I walked a little too far.  It took me more than 6 months to recover from preparing for my wedding in 2000.  Now I acheive more as I have a regularish routine of having Mondays as my disignated rest day and think of myself as a battery requiring charging before and after the things I do.  I hope that you can find a way to help.  There are some good newsgroups and internet support  groups but I found that focussing on it too much actually made me feel worse.  Good luck and happy to chat any time.

[Peri]

Hi pixi, Robinia and Firiffic,  As Robinia said Im still looking for a name for my ailments.  They started after the birth of my eldest fifteen + years ago.  Three weeks exactly after I got my first attack in my knee.  It disabled the joint for 48 hours.  I have had my arm in a sling during an attack.  After my second child I got worse and by the end of every day I was bent double.  On my third I got a bit better again.  I do the rushing around when feeling well and always pay for it.  Fatigue comes on very quickly.  I dont have IBS but I do have headaches which again last for 48 hours or so and no tablet will get rid of them.  I look my best during the attacks so to all intents and purposes there is nothing wrong with me.  I manage it pixi with homeopathy, osteopathy (because my pelvis was out of line for 15 years as well) and acupuncture and the odd anti inflammatory.  Be good to yourself pixi.  Give yourself the rest you need and dont give into the guilt we females feel about everything.

[pixi]

hi Firiffic  and  Peri hope you are both feeling fine today.  It's strange to chat to someone who has this as I don't know anyone personally with it.  You are all right about resting but I feel really bad when I do, I think its because I look healthy and well and people just don't understand how debilitating it is.  I too tell everyone I 've got a kind of arthritis as it takes too much explaining to make people understand what its really like.  Fortunately I have a fantastic husband who will do anything for me (cooks all the meals, helps a lot with the housework, washes my hair, cuts my nails, and all the other multitude of things that I sometimes can't manage. He even cuts up my dinner for me when my hands are bad -I get really frustrated when I can't do that)  He has a real sense of humour about it and keeps my spirits up by making me laugh, especially with my brain fog, I'll be stood there not remembering what I was doing and he'll say 'Oh here we go, another brain fog moment' He is wonderful.  Good luck to everyone and I hope we all have more good days than bad days.

[Robinia]

Hi all, hope everyone is mobile today!  I just wanted to ask if you were affected by the weather?  During the last hot spell a couple of weeks ago I felt as though I was going to explode & as the weather is changing again I can feel my arms & legs getting heavier.  I do like it warm but not too hot!! 

[Peri]

I was in Paris the year before last Robinia, do you remember the week that was extremely hot in August so much so that people died.  The pain in both my arms was dreadful and they swelled up and turned blue ish.  I've always told people I have arthritis too pixi, with swollen joints its the easiest explanation.  I dont know if I would be bothered going back for more blood tests to see what I have.  I dont think I m as bad as any of you though by the sound of it.

[Robinia]

Oh ouch, Peri! Yes I do remember how hot it was. ( I don't think I'm as bad as pixi though.  Just as well 'cos K.C.spaniels aren't very good at cooking, they get hairs in the gravy!) 

Pixi your husband sounds lovely - you're very lucky!!  Has he got a brother??  ;-)

[Mistopheles]

You poor thing pixi.

I don't have fibro, but I do have HMS, a fairly similar condition. A lot of people with HMS have fibro too, so a lot of my internet friends have it. I'm what I call half-house bound. Half the time I'm okay, in pain but able to do normal things. I have a part time job (self employed and flexible hours so I can take as much time off as I need). The rest of the time, I can't dress myself, wash, or do anything really. My partner is also my carer, and has to do everything for me at those times. It's so deameaning sometimes.

Like you say, it's particularly annoying if you've had a really good day and been able to get around, then you are hit by a day that stos you getting out of bed! I find the hardest bit is explaining it to others. They ask whether I'm better, but I'll never be 'better'. Or they say things like 'but you were fine yesterday', as if they think I'm faking it.

On really depressing days I cope by moaning on a great internet support site I found. I have a lot of friends on there now, and they know exactly how it feels because they are going through the same stuff. I also rely heavily on my partner. I really take things very easy, and spend my time reading (when I can hold a book) or watching films. But the only thing that really gets me through is reminding myself that tomorrow will probably be much better.

[Firiffic]

I agree about the sense of humour of those around you being great.  When I was at my worst and always on crutches or in a wheelchair.  One of my brothers used to call me cripple with a cause (like Rebel without a cause) and used to pull my crutches apart and put them together backwards and one long and the other short when I wasn't looking. I have really found that keeping on top of my pain meds means that now I rarely really feel pain as such although having said that I'm pretty inured to it now.  My biggest problems these days is my sleep.  I have big problems getting to sleep and while I have always been a night owl I'm often still awake when my husband is getting up for work.  You really just have to find a way of letting yourself just be how you are and not fight it all the time as that just makes you more exhausted and I actually found that once I kind of gave in I was better more often and for longer as I was letting my body do what it needed to do eg resting etc. When I first got it I couldn't read anything more than a paragraph because of lack of concentration but through making myself do puzzles starting with jigsaws and then working up to more and more complicated crosswords and whilst I still have my bad days I can now read simple books like Mills and Boon which is for me better than nothing (I used to read things like Jane Austen and Shakespeare).  Also I find it difficult sometimes to find the right word or phrase and my darling husband is very good at interpreting my sign language.  I'm worse before I get these migraines that I started getting with the fibro which are better than the other kind of migraine I also get but very rarely.  As for the weather thing I used to much prefer Winter to Summer but the longer I have Fibro the more the Winter's are harder and I experience more symptoms.  I'm also more temperature sensitive than I used to be as others of you have mentioned.

13:15 Sun 10th Jul 2005

[Firiffic]

Sorry about the double entry.  Had a weird computer glitch.  Hope you are all feeling good today and being nice to yourself if you're not. :-)

[pixi]

Hi everyone,  I haven't been on AB over the weekend and theres a few replys here so I'll try my best to answer everyone.  Robinia and Peri I too get badly affected by the weather.  I think its to do with air pressure (we have a barometer and I can tell without looking at it if the pressure has gone up or down) When it changes it feels like my arms and legs especially my knees and hips are in a vice. ps my husband has got a brother but hes gay.

Hi Mistopheles I haven't heard of HMS although the things you have said sound very much like I get myself.  I love reading with a passion but can only read paperbacks (not too thick and heavy) I only have to hold a book for a couple of minutes and my hands reallly start to hurt, especially the bit where my thumb joins the palm of my hand. What is the web site you mentioned?  I went on one called fibrohugs.com but it seemed a bit hard to use.  I cant spend too much time on internet - yep that hurts as well, so when I am on I come on here and a couple of other sites and thats about it.

[pixi]

Hi Firiffic,  I am giggling about what your brother does to you, its sounds a bit like my husband and kids, what would we do without them to keep our spirits up?

So sorry to hear you have had to use a wheelchair, at my worst I use a walking stick, and of course the arm/wrist, knee and ankle splints.You said you have trouble sleeping, my heart goes out to you. I rarely have trouble sleeping but on the occasions that I can't sleep the pain is much much worse the following day.  Well done for coping with that, I'm not sure I could.

On a more humorous note, you mentioned having difficulty with words and phrases.  I get this really really bad.  I am a standing joke in our house.  If Im trying to say something like 'put it in the fridge' I'm like, 'put it in the - you know - that white thing in the um um kitchen, you know what I mean, its in the corner next to the tall cupboard, you know , its cold.  All the time Im trying to describe the object with my hands, I must look like Magnus Pike.  My husband is also brilliant at knowing what I mean, he can guess what Im on about before I even begin to start gesturing.  Bless him. 

Before I go I 'll give you all a laugh.  When I was first diagnosed I also found out I have hypermobility which means my joints move a lot further than they should which in turn makes the fibromyalgia worse (im really clumsy and always dropping stuff) I asked the doc if it would ever get any better and he said that when Im older, if I get arthiritis, then that will seize my joints up a bit and should make it a bit better.  I also asked him what the best thing was for the pain and he told me that if he encased me in plaster of paris all over my body then it shouldn't hurt at all.  Think I'll stick with the paindullers (cant call them killers cos they dont work)  :)  Keep smiling everyone, at least it doesn't hurt to do that.

[Mistopheles]

Hi Pixi.
You probably are familiar with HMS, but don't realise it! It stands for Hypermobility Syndrome. It means I'm hypermobile, like you, but the syndrome means it's accompanied with lots of dislocations and massive amounts of pain. The only up side is that it means you can make other people sick with your bizarre party tricks! All my joints do lots of things they aren't supposed to do, like bend backwards. Fun - NOT!

The website is http://www.hypermobility.org/
If you go to the HMSA Community bit, then boards, you'll find loads of us hanging out and chatting. Everyone is lovely - come and say hi sometime! We have local meet-ups as well, usually accompanied by vast amounts of choccie cake...

[pixi]

Hi Mistopheles I didn't realise HMS was the hypermobility thingy.  I too get sort of dislocations, where my knees, hips and wrists seem to pop out then go back in.  Fortunately I've never had anything pop out that hasn't popped back in, but it really hurts, one of those hurts where you don't know whether to laugh or cry.  I'm laughing about the party tricks, I'm forever saying to my husband, kids, mates, etc 'can you do this, then bending my hands back over the back of my arms.  I dont know why I do it cos its not comfortable but the look on their faces and their eeekkkk of being squeamish just makes me laugh.  Thanks for the website link, I will definately pay a visit (don't know when, I checked my email this morning and I had over 50 new mail all from AB so how long it'll take me to answer all the replys I have I dont know) It won't help that my shoulder is seized up this morning. 

[Firiffic]

Hi all.  Thanks pixi,  you really made my day and cheered me up.  We are having a bit of a hard time at the moment and you really made me and my darling husband were cracking up over your fridge story mostly because we have had almost identical conversations ourselves!  I'm not up to saying much to day as I acheived quite a lot today so I'm sore and tired now and concentration nil.  Later all.

[pixi]

Hi Firiffic hope you feel better soon.  Don't think this heat is helping anyone.  Take Care and please rest. Bye