Fibromyalgia

[MrsRichardHammond]

I originally posted this in 'parenting' as i didn't realise this was here :) but i'm looking for other parents with fibromyalgia to find out how you cope with life, parenting, work, everything really. I'm newly diagnosed and really struggling right now.

Hiya :)

I think theres a few of us on here as another thread was started a few weeks back with he same title, also there seems to be a LOT of M.E sufferers on here too, & as I'm sure you know they are very similar

I cope with life at a MUCH slower pace,

cope with parenting okay, but think a lot has to do with my DD never knowing me any other way so is very accepting of what I can't do,

& I can no longer cope with work, so had to give up, though I'm lucky to have a trade that means I can work from home as & when I can, though frustrating as I would like to do more, but realise I do get very ill again if I get too involved with work

& if its any reassurance, you CAN get improve from where you are now, I certainly have, but its trial & error as to what will work best for you personally, though clean chemical free healthy diet, sometimes catering to underlying intolerances such as wheat, diary, etc will help a lot,

5HTP can be a big help with regulating sleep, which is key to brining most of your other symptoms back into line & Supplements such as Spirlina can boost your general health & Immunity & Nurozan can help with cognitive stuff,

Pain & Anxiety symptoms are self feeding in that they stress your body, & stress of ANY kind is by FAR our worst enemy, so you need to find ways of dealing with those that work for you

be kind to yourself...you are ILL, NOT LAZY...& generally pace pace pace, & don't be too proud to ask for help when you need it

Thank you for your post. I've been put on Lyrica by a pain management consultant at the local hospital along with codeine, paracetamol and some other anti-inflamatory that i can't for the life of me remember what it is called.

I've put a post onto the other ME thread and look forward to chatting to you all more.

The pain, fatigue, and lack of sleep i can cope with it's the dizzy brain fogs that i can't deal with. I got in my car the other day and forgot how to turn the thing on, and thats just for starters lol

www.fibromyalgia-associationuk.org/phpBB3/index.php#1

& if you've not looked at FM support sites, the one above is national & is a great source of info & advice on all sorts of relevant topics, & can probably oint you in the direction of a local support group too

I will definitely look into the natural remedies but the amount of pharmaceuticals i am on id worry there would be some contraindications there.

Thank you. I'll certainly give it a look, i've got a lot of soul searching to do in the near future i think. :(

Oh I know that 1 too well

www.vitabiotics.com/neurozan/

I found the stuff in the link above a big help for the dreaded "Fibro Fog" you can buy it in Boots etc....no cure, but definitely helps some

lack of sleep WILL make "Fibro Fog" far worse though, so even though you say you can cope with that, you wouldn't be as foggy if you could improve your sleep

I also swear by aromatherapy oils, Lavender & Roman Chamomile help sleep too

Also in the beginning I used to panic when I suddenly didn't have a brain, I realised that just made my brain shut down even further.....I've best thing is to keep a sense of humour & stay relaxed, distract yourself, rest have a coffee etc if you can, & thn try again

I don't flood the house, get lost in my home town put the TV remote in the freezer, use felt tip instead of kohl pencil etc....half as much as I used to

I was diagnosed about 8 years ago, BTW & now also have M.E. etc diagnosis on top

I would also advise that you do educate yourself, as IME a lot of us go on to get other diagnosis eventually, usually ones lesser known & not readily tested for when they do the first run of tests....IME Hughes Syndrome, & Thyroid Disorders etc, so work bugging for more tests......a good friend of mine diagnosed strangle the same week as me, eventually went on to get a hypothyroid diagnosis, is now on treatment, back ay work & generally MUCH MUCH better than she was :)

worth not work.....what makes you think damned migraines keeping me up lately

Brilliant, i'll certainly look into all of these!

I've also been advised to cut aspartame out of my diet entirely as there is an issue with aspartame toxicity which mimics fibromyalgia?? not sure if thats one you've heard of but i am certainly going to try it if i can be 'fixed' by something so simple!

The using a felt tip instead of eyeliner made me chuckle, i've not really done similar with a colouring pencil before...honest...

a lot of us can't tolerate any of the fake sugars, or additives in general, I know I can't, so avoid them & I REALLY know it if I eat any when out & about, as symptoms do flare up, so IME I can vouch for keeping your diet "clean" been a big help

good luck

& just for a giggle

did you know that us Fibromights are special

DH has an old friend, shes lovely, but very much VERY full on hippy dippy, when he told her what I had been diagnosed with, she had him choke on his pint by clapping her hands together, all excited & declaring "oh wow, I've always wanted to know someone THAT special, they were all abducted by Aliens weren't they

I googled it, & was [shocked] to see there really IS a load of it on the internet

so if you ever want to shut anyone up who is being critical....its a good one to shut them up

Oh my days thats funny!

Thank you for your help, it's certainly given me a place to start from :)

No problem :)

& its hard for us all in the beginning, life adjustment & all, but you will get there, we all do & in a weird sort of way I'm actually quite grateful to it, as it forced me to slow down, which I realise now, is no bad thing

Hello hope you don't mind me joining your chat. I have not been diagnosed yet but have had loads of blood tests and two doctors have said thats what they think it is. I too am finding it quite difficult to adjust , maybe accept that I am going to have this pain for the rest of my life. It isn't a nice thought is it! I am off work at the moment and am feeling alot less pain but worried about what is going to happen.. I am a lone parent so it is quite hard.
But more positive the ways I am mangaing are: I have brought a electic blanket and it is really nice when I am in pain and helps to get me to sleep. I too have been cutting out as best as possible all the junk from my diet. I take alot of vitamins and the 5 htp. I go on Fibromyalia uk forum and that has been keeping half sane the last few weeks, it is nice to speak to others who understand.I have been to the library and got some books on FM and also some relaxation cd which really help me to get to sleep too. Hope this helps x

Hi, join in, join in, it's reassuring (i won't say nice as it's horrible to hear others are in the same place) to know others are going through similar things, hopefully we can find ways of pulling each other through it :)

thank you. So what are you doing at the moment? I am guessing you are a Mum? Are you working too? How long have you been feeling unwell?

I work full time, although i've been signed off recently :(, and also a mum. Been feeling unwell for years and had a tentative fms diagnosis as a teenager but nothing followed it other than 'get on with life' and got formally diagnosed a few months ago and am now being, what i'd call, looked after for it.

How about you?

Morning hope you got a good night (posting so early as not been able to sleep much last night)!!Yes same I work full time, two part time jobs. I was signed off a couple of weeks ago as it got too much.One of my jobs is nights and it is so hard on my body to put myself through that at the moment. They are both quite physical jobs.

The pain has improved since being home not sure my mood has!! lol hence being on here chatting as missing my work pals.

I think I may of had it when I was a child too.. I was always complaining that my legs hurt, but my Mum said it was growing pains. It started in July last year wasn't to bad at first but after a cold /flu in October I have not been well since pain everyday.

Kind of got a bit better under control from where I was at a couple of months ago. Still not functioning very well though. Kind of just managing. It is a very difficult things to get to grips with don't you think?
Hoping you have a painfree day x

Sorry for all the mistakes brain isn't working too well by the looks of things lol

Morning Happy, sorry to hear you have also been signed off, it's a nightmare when all you want to do is go back isn't it :(

I had a rotten night last night - partly due to me having a stinking cold though - and didn't fall asleep til 2am which made for a fun school run today - especially as my daughter seems to have the snots too and didn't want to go.

I think you're the master of understatement when you say it's difficult to get to grips with lol :) bloody impossible i'd say! It's like you start to make progress then something as stupid as a cold can undo months of hard work :(

Anyway, enough rambling from me, im back to bed for the day to see if i can get ANY sleep!

Wishing you, and everyone else, a pain free day x

Hello made me laugh when I seen you wrote "morning Happy" !!! That was the old me when I signed up to MN months ago maybe I should change it to Paineverywhere!

Hope you manged to get some more sleep. I went to bed from 12 to 2pm and felt abit better for it. I am trying to fight a cold too the last few days. Brings you down doesn't it.Like we need anything else to cope with ! Lucky mine hasn't gone to fullblown as yet.

Surpose I am lucky as son is old enough to get himself to school. I just give him bus fare and he sorts himself out. Saying that he is around till 9pm or 10 at night so don't have that child free time in the evening.
Hoping for a good night for all tonight x

Hi from me too Happy :) I am so jealous you can manage catch up sleep in the day...I've never been able to do that, doesn't matter how rough/wiped out I feel, I also find sleeping too much....the much needed weekend lie in for example, always makes me feel worse, not better

& don't even think about apologizing for typos, anyone who feels a need to criticize such things, is the one with a problem...NOT you

Rockinhippy - ive not so much caught up on sleep more collapsed into a heap in bed and not moved

Blame the typos on fibro fog :o

Hello Rockinhippy ( good name). I have a electric blanket and a relaxtion cd think it is kind of hynotic trace that leads to sleep. Its working at the moment any how.

Work have paid for me to see a counsellor for 6 sessions. Just thought I would share some 'homework' she has given me lol!!

She said to plan out my day so it includes : work, rest and play (social or nice things). Eg morning getting washed and dressed would be work. Arranging for family or friends to come over would be play. So as not to overdo and so I also have time for things that make me happy also to ask friends and family for help.. something that I am not to good at, but she made me see that it is an ok thing to do and that they might feel useful being able to help.
So am feeling better for that hope it may help you guys x