Mumsnet has not checked the qualifications of anyone posting here. If you have any medical concerns do consult your GP.

Fibromyalgia I need some help/tips

(14 Posts)
rumbleinthrjungle Thu 24-Oct-13 20:40:52
rumbleinthrjungle Thu 24-Oct-13 20:39:52

Months late, but in case you see this:

Ever seen this? It's very common, probably on a lot of the threads:

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

This got me into energy accounting, and I started separating everything I did (EVERY. THING) into energy giving (rest), energy using and energy neutral. And then keeping track of what I was taking out of the budget and what I was putting back in. I realised fast that on a bad day watching tv, surfing the net, typing, washing up, all that kind of stuff, cost energy I didn't have. I did have to build in a couple of scheduled short rests (laying down eyes closed) for 15 mins to balance the books. I've gone out to the car on breaks at work for 15 minutes laying flat on the backseat, eyes closed. It helped, I was on the edge of bedridden at the time. It's beyond annoying to have to limit myself but if I don't I'm sorry afterwards.

The only thing that controls the pain and tiredness for me (Fibro on top of other things) is keeping in the black on that budget and thinking of it as a budget. If I get 'overdrawn' then the pain and flare pay back on the interest is bad and it takes days to rebalance. And there's the basic chronic illness stuff that also helps, like keep the freezer stocked with good quality stuff that just needs defrosting so no cooking on a bad day, dry shampoo (I could not survive without that stuff) and even paper cups and plates to save a bowl full of washing up on a bad day.

Think about diet, especially in bad patches, and see if you can find things that help. Carbs can flare me badly if I'm in a less good patch, and small frequent meals use less energy to eat than large ones. Easily digestible or very soft foods also don't use up a lot of energy to digest. (I make a lot of home made soup and stuff it in the freezer.) Sounds ridiculous but I find tv channels with adverts drain energy and increase flares on bad days as they're loud, bright, fast and unpredictable and fibro often causes hypersensitive vision and hearing. Keeping the house quiet and calm and keeping upbeat or relaxing dvds around also helps, stress and agitation burns energy and it's very very hard not to be stressed when you're in a lot of pain. I also find the only major pain reliever for me is moist heat, like a shower, bath or beanbag microwave pads, and do them morning and evening needed or not. That seems to keep pain from building up.

I found it useful to write and keep a 'plan' of all the things that help on bad days, all the things I can do that I know help. Often on a bad day when I'm badly brainfogged I don't remember what to do or how to feel better and it helps to have something written to follow.

chelsee1 Sat 01-Jun-13 15:49:19

Hi I have not been diagnosed as such with fybromyalgia. It all started a year ago. Pains in my body. Went docs & they said i had a vitamin D deficiency. Put on tablets for 6months. Pains got worse. Went back had blood tests & nothing. Then seen another doc & he said he thinks ive got fybro. Put me citaphalm they seem to work for a while but the last month or so has been awful. More blood tests for menopause & thyroid. All ok. Not sure what to do now. Can anyone help. I am fed up with the pains, sleep disturbance, & the tiredness is dreadfull. Im 48 years old & feel 70. Not good. Any advise would be appreciated :-)

evansthebread Thu 04-Apr-13 22:27:51

Yeah, Flylady is good. I'm a fibro, too. Have you searched fibro? www.ukfibromyalgia.com is one group that'll have links to a group in your area.

Your GP should have some info about pain management courses (they teach pacing, too). The pacing is probably the most important thing you can do for yourself. If you overdo it, you'll pay in spades for ages after. Your GP should refer you to a rheumatologist for specialist help.

I'm careful about what I eat as oxalates set off my pseudo gout, but I've not noticed it helping with the fibro.

I second the CAB suggestion, but claiming is going to be very hard work with the changes afoot now. (I get so bloody annoyed about this as it's genuinely ill people that need help that are being punished and slated in the press.)

Good luck.

TurnTables Tue 26-Feb-13 19:21:54

Hi there

First of all big hugs from someone who is suffering from M.E know what it is like. It's so frustrating! Yes I have improved myself but I do get bouts where my legs, arms brain doesn't work. What I have found that helps is the website www.flylady.com I think that's the address.(housework etc) If not just Google flylady and I'm sure you would get somewhere. I find if you at least just do a bit at a time you feel that some has been done. I have actually got a cleaner that comes in once a week which I can't get by without. I do general maintenance myself like put my dirty clothes in the washing machine instead of in the wash basket. Once I have a load I put it on. Stitch in time and all the jazz.

As for the benefit you never know unless you try. Go to c.a.b and get their advice on that one. I know that there has been a lot of changes and those who would have been eligible are not now.

OhMyNoReally Fri 25-Jan-13 14:01:51

I've have fibromyalgia since I was 17 my GP thought it could have been related somehow to having glandular fever but no one is sure.
So far I have tried codeine and amatryptaline both work but make me feel rubbish. I can't take gabapentin as I'm allergic to it, but I know it works well for others.
I have also tried talking therapy (that one just annoyed me and didn't help.) and physiotherapy (also no good)
The vegan diet didn't work no did the paleo diet I tried both for 8 months.
I find when I'm pregnant up until baby is about 3 months my symptoms subside (but I now have 4 dc and I'm not sure I want any more)
Currently I'm 4 days into trying the low oxalate diet, but it's a bit tricky with breastfeeding but I think I can eat enough without being too hungry.
I also walk a lot and I want to start swimming but haven't got a bathing suit at the moment and can't afford one.
I also nap when I can but I also dislike doing that as it makes me want more sleep.
I can really sympathise as my dh has taken a 2 year uk job he usually works abroad but my last relapse was so bad that with 3 kids I needed more support. I then found I was expecting but as ds is now 2 months the symptoms are back. If the low oxalate diet doesn't work I'm not sure what we'll do in 2014 when he's due to start travelling again.
Anyway I know how hard it is and if your thinking of trying low oxalate I will be doing it to. Also feel free to pm me about anything at all if you need it. All the best it's hard but you will manage somehow. smile

Mutteroo Thu 24-Jan-13 01:39:37

I know a few friends with fibro (I've a few other medical conditions and thankfully not fibro). One particular friend has the attitude that she must keep going and never give in to the condition. She always has a rest mid afternoon and doesn't let an awful lot get in the way of that. She takes regular pain medications which help and has a great GP. Another friend with fibro worked until retirement with the help of extra aids like a special chair and raising her desk height.

If I could offer a little extra advise its to pace yourself. Easier said than done but trust me if you can do it even a little, you'll find the peaks and troughs are lessened. We all benefit from hydrotherapy and both ladies mentioned do palates with a tutor who works with people with disabilities.

As for benefits. Yes you can claim. You can get what used to be called Disability Living Allowance even if you're working, but like most benefits, you need to prove how disabled the medical condition leaves you. Other benefits are dependent on your family income so be warned. Hope

I've been of some help?

FancyPuffin Sun 06-Jan-13 09:50:02

Can't really help I'm afraid but didn't want you to go unanswered.

Maybe re-post this in General Health? I know there are a few Fibro sufferers about.

Hope things get a bit easier for you soon.

SparklyandHappyMe2013 Sun 06-Jan-13 09:37:54

Bumping again sad

SparklyandHappyMe2013 Sat 05-Jan-13 21:37:48

.

SparklyandHappyMe2013 Sat 05-Jan-13 08:58:55

Bump x

SparklyandHappyMe2013 Fri 04-Jan-13 17:34:06

.

SparklyandHappyMe2013 Fri 04-Jan-13 11:27:13

Bump

SparklyandHappyMe2013 Fri 04-Jan-13 07:12:26

I was diagnosed with fibromyalgia last year after having it since DD1 was born. My DH works very long hours so mon- fri I am almost like a single parent to our 2 DDs plus working 25hrs a week and tbh it is exhausting. I try and stick to routine as much as possible (DD1 aged 7.9yrs needs to have routine or behaviour goes out the window & DD2 only turned 1 end of dec).
I need helpful tips on how to stay energised and not completely exhausted and in massive amounts of pain.

Also if I were to give up work could I claim any disability benefits? Never claimed anything before so don't know what's what?

TIA

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now