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just been diagnosed with fibromyalgia. what do I need to know????

(9 Posts)
PainForLife Sat 16-Mar-13 18:13:58

hi all,
thank you so much for all the info above you guys have no idea how useful it has been.
confusedpixie I barely have energy to even get myself out of bed. doing other tasks is just an absolute no no. I've had all sorts of physio (tens machine, accupenture etc) all useless sad my daily carer helps me shower n get dressed every morning & make me breakfast. yep that is how incapacitated I am atm!!!
fuzzpig I've already had an occupatitonal therapy visit - they have put daily carer in place who comes for an hour every morning.I've also got walking aids & a bathboard. they also wanted to to put things on the walls around the place to help me walk but my lovely asshole of a landlord would not allow it sad thanks for the invite to "spoons" thread I will definitely mark my place on it.
CFSKate thanks for the link I will have a look through it. had quick scan of it just now it looks very useful.
Peggoty exercise doesn't seem to work for me sadly sad your idea about concentrating on breathe has also been suggested by my psychiatrist so I've already been doing it well since yesterday anyway - so far it's not been working that great but then again I've only been trying it for 2 days so I've got to give it at a week before completely writing it off.

thank you all again for all the info thanks

hope today has been good for you all - for me it's been a painful one sad

ConfusedPixie Sat 16-Mar-13 12:03:44

fuzz: I've dipped in and out of the spoons before lurking. I'm shite at keeping up with posting on the long running threads blush

Part of the reason I use MN is because it's easy for me to drop in and out without having to keep up with the thread, I should make an effort to get onto the spoons thread though! I've decided to join some other threads about keeping track again so will get on smile

I save my energy for climbing. I'm not sure how much longer I'll be able to keep it up as my hands are starting to get painful more regularly now but it's my escape these days. Even Scouts takes a backseat to it.

DP and I invested in one of those sunrise clocks too, I have found that a great help in the mornings, waking up over the space of 30 minutes is much easier than waking to an alarm.

Physio is the first thing I'm going to push for when I can see a doctor again. I managed to see one in January at my local surgery as a 'visitor' as I hadn't signed up yet, then signed up and had to wait four weeks to see a sodding nurse who will 'assess' me as it's standard practice at this surgery hmm But the nurse appointment is on Tuesday so I'll be booking in to see a doctor ASAP after that and I'm also seeing an alternative practitioner who specialises in reactions to foods, which I know I have many but they are only mild gut/fatigue reactions.

Peggotty Sat 16-Mar-13 11:17:06

One of the main differences between cfs/me and fibromylagia is that gentle exercise can help with the symptoms of fibromylagia - you may be referred to a physiotherapist for help with this and if you aren't think about asking to be. It's important to pace what you do throughout your day, similar to cfs, and experiment with doing things a bit slower and having more short rest breaks. Don't underestimate that your energy level can be affected by both physical and emotional demands and that proper relaxation where you literally do nothing and maybe concentrate on your breathing for 3 or 4 minutes is better than cognitive activity like reading or watching tv as relaxation. Although doing those things is good too! smile

fuzzpig Sat 16-Mar-13 11:12:05

BTW last week I finally bought an electric blanket which is brilliant - warmth helps the pain. I also sometimes put Dead Sea salts in the bath (£7 for 1kg - 4 baths worth - in boots) when I actually have the energy to have a bath.

I guess the key thing for disabilities like this is that you can't wave a magic wand or take a pill to make it go away, but you can do things to manage your symptoms a bit better, and take shortcuts to make your life run a bit smoother, to leave energy (or 'spoons' grin) for what really matters. Little things like prechopped veg/grated cheese etc all help.

Also - even though you probably feel like you have to save all your strength for doing the things you have to do, it is ok to save some for something you enjoy too - for me the main thing is piano, as I used to play loads. I can't do it much now as I get pain in my hands, but I give myself a little time on it now and again because it makes me happy, and I deserve to be happy just like anyone else! smile

Another thing - when I got my diagnosis I phoned adult social care - the occupational therapy dept did an assessment to see how they could help - they can adapt your home in small ways to help. They are sending me a stool for the kitchen because I can't stand long enough to cook.

Also I have asked for a referral to physiotherapy because they will do a 'walking assessment' on me and see which walking aid might help (crutches etc).

Hope all that helps. thanks

CFSKate Sat 16-Mar-13 11:09:40

I don't have fibro myself, but this might be useful, the ME/CFS version I know to be good, so hopefully the fibro version is good too.

longer version

from this page

fuzzpig Sat 16-Mar-13 10:57:47

Argh I wrote a long post and my screen refreshed and lost it all <wail>

I have chronic fatigue syndrome (aka ME) which has a lot of overlaps with fibro (in fact some people think it is the same illness but with a different presentation of symptoms). I am considering chasing a diagnosis of fibro too because often for me the pain is worse than the fatigue. I'm off work due to a relapse ATM and have just got the ok from occ health to reduce my hours - FT is exhausting and is making me more ill.

I just wanted to say you both are more than welcome on the "Spoons!" Thread - it's for people with CFS/ME, fibro, lupus etc (even if not diagnosed yet), as many of the symptoms and difficulties we face are similar. We are all very friendly over there smile and honestly having that support - chronic pain is such a lonely thing as most people just don't understand it - has made a difficult time a little bit easier. Sometimes it goes a bit quiet as even posting on mn can be exhausting, but there's usually someone around.

ConfusedPixie Sat 16-Mar-13 10:36:24

Oh, and lists. When I'm actually doing them, they are a life saver! Write down everything that pops into your head. Make lists of everything you need to do. Check the list constantly mine for today is being ignored as I procrastinate.

ConfusedPixie Sat 16-Mar-13 10:34:26

I haven't got a diagnosis yet, but I've started the long, ridiculously slow process and it's pretty bloody obvious that it's what I have.

The biggest thing for me has been cutting out gluten. My fibro fog had been getting progressively worse and got to a point of being almost constant. I cut out gluten a month ago (I think? maybe three weeks) and the constant fog disappeared immediately. Now it's back to what it was a couple of years ago, later in the day, when I'm tired. But doing that has made my joint pain worse, which I'm not sure is coincidental or not but a friend who gave up gluten (due to IBS in her case) told me her joints are slightly painful now weirdly enough.

Setting small, achievable tasks and goals for each day rather than massive ones.

I have a couple of games that know I can get sucked into and when I'm in more pain than usual I play those as a distraction. I am lucky as my pain generally isn't too bad, it is just constant, and I can go without painkillers most of the time. I don't like using them as I got to a point in my teen years where I was having ibuprofen, paracetamol and codeine constantly due to knee pain, which was the only joint pain I really suffered from until I was 18/19 I think.

I check the weather and atmospheric pressure every day for the following day as that effects my joints and head symptoms.

My head symptoms are what get me the most. I talk too fast for my mind to catch up and struggle to speak coherently when I'm tired. That and if I go climbing to a big centre on a Sunday I'm whacked out for the week; 7 climbs on the 6 metre wall at my local centre seems to be my limit, but that's not very high or exciting sad

You need somebody who you can complain too and who is sympathetic. I try not to complain to people as a lot of people don't understand it. DP gets the brunt of my frustration and he copes really well with picking up the slack. He does most of the cooking, most of the housework and looks after me because working tends to whack me out (I only work 28 hours a week). He also calms me down when I get pissed off at myself because I can't ride a bike due to my problems, or go paddling any more, or knit very often or do my coursework or go do my scouting. I rely on him a lot more than I like to admit, especially because I don't really have any friends and I struggle to find time to go see people I want to because of feeling so shit when I finish work.

PainForLife Fri 15-Mar-13 15:53:49

so I have been told by my neurologist that I suffer from fibromyalgia (a diagnosis not surprising after 3 years of having fatigue & muscle n joint pains) she said there is no cure just pain management so has written to my G.P asking to be referred to pain management clinic. I had a pretty nasty mental health breakdown a couple of months ago. I'm up to my eye balls with daily medication & now I'm on nerve meds called pregabalin as well.

been looking up the condition online to understand a bit more about it & a I've understand is that it's chronic pain.

any sufferers out there that can give me some advise how to make day to day life manageable.

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