General Chat

Top tip - using the Genes Reunited community

Welcome to the Genes Reunited community boards!

  • The Genes Reunited community is made up of millions of people with similar interests. Discover your family history and make life long friends along the way.
  • You will find a close knit but welcoming group of keen genealogists all prepared to offer advice and help to new members.
  • And it's not all serious business. The boards are often a place to relax and be entertained by all kinds of subjects.
  • The Genes community will go out of their way to help you, so don’t be shy about asking for help.

Quick Search

Single word search

Icons

  • New posts
  • No new posts
  • Thread closed
  • Stickied, new posts
  • Stickied, no new posts

Fibromyalgia

Page 0 + 1 of 5

  1. 1
  2. 2
  3. 3
  4. 4
  5. 5
  6. »
ProfilePosted byOptionsPost Date

~~ Jules in Wiltshire~~

~~ Jules in Wiltshire~~ Report 13 Jan 2012 17:38

I was just wondering if anyone else suffers from Fibromyalgia? I have been diagnosed by the doctor today...It has taken them nearly 6mths to find out what was wrong with me...The pain today is almost unbearable...I have been given some painkillers called Naproxen.....
It's the brain fog I find weird...Last night I couldn't even remember how to turn my laptop off!! Gawd i'm getting old... :-D :-D

Jules x

AnninGlos

AnninGlos Report 13 Jan 2012 17:42

My sister does Jules, then there is Liz Purple, Dawnie quite a few on here I think. You could try doing a search because somewhere there is a long running thread on it.

Yes sister has spoken about the brain fog.

~~ Jules in Wiltshire~~

~~ Jules in Wiltshire~~ Report 13 Jan 2012 17:45

Thanks Ann I will take a look.....xx

YorkshireCaz

YorkshireCaz Report 13 Jan 2012 18:12

Yes I suffer from it and take morphine for the pain. The brain fog is awful at times I just sit there looking at the person I am talking to, just cannot think of the word I want. As for remembering how to put the microwave on, forget it.

Caz

~~ Jules in Wiltshire~~

~~ Jules in Wiltshire~~ Report 13 Jan 2012 18:16

My spelling can be terrible sometimes...I forget how to spell the most simple words!!

Jules x

Purple **^*Sparkly*^** Diamond

Purple **^*Sparkly*^** Diamond Report 14 Jan 2012 05:05

Jules, thought you knew I had it and all the others mentioned above, others too whose names I can't recall at the mo but it's becoming more and more common seems to me.

It's slowed me up something terrible and the worse part for me is the poor quality sleep hence my odd hours I keep.

Take care and treat yourself kindly - that goes for all sufferers, it's an illness that isn't visible so people expect more from you than you are able to give most of the time.

There were several threads up, will try and find them later today
See if there is a local support group in your area, it might help you find ways of managing the b***er!

Lizxx

Dolly

Dolly Report 14 Jan 2012 07:26

Hi Jules, Yes I have it too and have had it for many years, it took over ten year to be properly diagnosed as I was first diagnosed with rheumatoid and osteo, then changed consultants and found it to be fibro.
It is very debilitating, the brain fog is terrible, I can't remember every day objects when I'm talking to hubby but luckily he knows what I'm on about,he is extremely understanding thank god or I'd be completely useless.

I know there is a few of us on here suffering with it. Like Liz says there are alot of support groups around the country and online.

Dolly X

Purple **^*Sparkly*^** Diamond

Purple **^*Sparkly*^** Diamond Report 14 Jan 2012 08:10

Morning Dolly, sorry I forgot you had it too

I wonder why it seems so prevalent nowadays or is it that it hasn't been recognised in the past? I remember my Dad saying he was in pain, saying he had 'the screws' in his shoulders, maybe it was fm but not recognised as such or even named as such in those days - I am going back 40 odd years or more.

Wonder when it was first recognised, does anyone know?

Have a gentle day everyone.

Lizx

AnninGlos

AnninGlos Report 14 Jan 2012 11:03

I think my sister was first told it was ME then fibro.

Does it affect your long term memory? I ask because my sister doesn't remember anything about our childhood. I ask her things about our parents (she is 6 years younger than me so had quite a few years with them after I'd left home). And she can't remember a thing. Not even about what she did as a child. I have to tell her. (probably a good thing because she doesn't remember me pinching her when she wouldn't do as I wanted!!!!! :-)

Dolly

Dolly Report 14 Jan 2012 11:19

Morning Liz, FM was called Fobricitis years ago, or just aching muscles and called rheumatism, it has become alot more defined now in symptoms.

Ann, I don't think long term is affected, it just seems to be memory loss in naming items and finishing a sentence when you can't remember the word you need to use. I'd ask her GP incase it is something else thats causing that much memory loss.

Have a good day everyone :-)

Dolly X

Dolly

Dolly Report 14 Jan 2012 18:03

Meant to say Fibrocitis!

Dolly X

~~ Jules in Wiltshire~~

~~ Jules in Wiltshire~~ Report 14 Jan 2012 19:13

Hi ladies....Yes Liz I remember you telling me you had fibro as you thought that is what I had...You were right!!!
Today hasn't been a good day, have a thumping headache that just won't go away...Couldn't sleep last night, I got up 4 times...There's so much I want to do and I'm just not able to...Been thinking about my garden as alot needs doing, new fence, patio needs relaying as it's uneven, bushes need taking out and a small tree needs cutting down....I hate asking for help and I just can't afford to pay anyone to do the work except for the fencing....

Jules x

Purple **^*Sparkly*^** Diamond

Purple **^*Sparkly*^** Diamond Report 15 Jan 2012 04:59

Hi Jules, the broken sleep is the worse part for me.

I wonder if there is a local Scout group who would help you do some gardening work or people at the local church? Is there anything you could do in return for the work like babysitting or helping someone on the computer in return for them helping you out?

Maybe if you don't think about the whole garden and just think about one job at a time, it won't seem such a lot to worry over.

Been trying to find a chance to call you for a natter but you know how it is here with me, maybe next week sometime when he is on late shift

take care
love
Lizxx

MEgirl

MEgirl Report 15 Jan 2012 05:15

Hi Jules,

I've had it now for nearly 17 years along with ME. They say you lose 18% of your IQ with it. The brain fog is terrible, but I try to take fish oils for that. I have been known to peel a banana and go to eat the skin whilst putting the fruit in the bin :-S My short term memory is badly affected. I take lots of magnesium (more than normal dose).

If you can soak in an Epsom Salt bath, that helps. I can't do that anymore as baths exhaust me. My husband only works part-time and is my carer and I am a very poor sleeper too - lots of relaxants and pills before I attempt to go to bed.

I don't own a mobile phone and couldn't grasp how to use one and simple maths is impossible.

Wishing you well and lots of gentle hugs xx AND CLEAR THINKING (I WISH).

Purple **^*Sparkly*^** Diamond

Purple **^*Sparkly*^** Diamond Report 15 Jan 2012 05:48

Meant to say I did nudge up a couple of threads but can't find the old long one that lots of people posted on. They are now on page 4 or thereabouts.

MEgirl, I was told at the Chronic Fatigue Clinic at the hospital that I didn't have ME but the fm could become ME if I was unlucky. At that stage they said it had just become CFS

I sometimes struggle for a word but usually can manage it eventually, I read a lot and do word puzzles to keep my brain going. The pain and the lack of sleep is what I hate about my fm and cfs, I would love to go to bed and wake up feeling refreshed but even on holiday when I keep more normal hours, it still doesn't happen. I find I nod off a lot during the evening too altho I think that's because we have the gas fire on, no central heating here in o.h.'s house which means my osteoarthritis in my knees and ankles plays up a lot as well as the other aches and pains of fm.

I wish there could be more work done on these illnesses and the corelation of them to each other. I would also like to find out more about aspartame and whether it causes fm as it's so widely used in lots of foods and drinks in the UK despite being banned in the U.S.A.

Lizx

MEgirl

MEgirl Report 15 Jan 2012 08:08

Hi Liz,

I experienced the ME symptoms first, swollen glands, headaches and then totally collapsed had to go to hospital for 11 days. The ME has brought on 5 autoimmune diseases which are worse than anything else. I use the genealogy and interacting on fb to keep me sane. The fm came next and my sleep patterns went from being bombed out to no sleep at all. Yes, like you I would give anything for natural refreshing sleep. I also had some special blood tests that showed I had various viruses in my brain. They cost a fortune, but you try anything I guess :-S Plus I was bitten by mozzies one night at a restaurant, must have had about 30 bites. I was found to have active Ross River Fever - another cause of pain, but it isn't active now. My son also has ME and fibromyalgia. He is in better shape than me, thank goodness.

Lol, I put the Parliamentary Question Time on and that usually puts me out for a couple of hours :-D

I did read they did some testing on pilots a few years back using aspartame and it showed a massive deterioration in reaction times and concentration, so it definitely would make brain fog a lot worse - not sure about pain levels.

Would just love a pain free, symptom free life, no money can buy that!!!!!

Cheers, Kim xx

~~ Jules in Wiltshire~~

~~ Jules in Wiltshire~~ Report 15 Jan 2012 13:42

Still didnt have a very good night last night and am exhausted today...The worst thing is living on your own and having no-one to help you...But on the other hand at least I don't have my husband moaning at me and calling me lazy anymore...

Jules x

MEgirl

MEgirl Report 16 Jan 2012 04:31

Same here and then didn't get out of bed until well after midday. Can you get some sort of home care via your doctor?? Just to come in and do a few jobs for you or shopping? Church groups or the scouts to do some outside maintenance for a donation. I too went through the stage of being called a malingerer or lazy. They can at least see the condition I am in, so they don't say these things any more.

Kim xox

Purple **^*Sparkly*^** Diamond

Purple **^*Sparkly*^** Diamond Report 16 Jan 2012 04:49

My o.h.'s son called me lazy once, he doesn't now and is starting to realise how things are but it took him a long time and his dad didn't stick up for me either, which made me more angry.

I still think the aspartame is what set my fm off, I had a kidney stone and was told to drink more to flush it through, it was the size of a grain of rice apparently. I don't like tap water so was buying those bottles of fizzy fruit flavoured water from the supermarket and drinking one litre bottle a day.

I stopped when I started feeling so tired etc and was diagnosed with fm, and realised aspartame was in the fizzy water. Now I try hard to avoid having anything with it in but I think it's too late, the damage is done.

Lizx

Skull

Skull Report 16 Jan 2012 07:55

Hi all

only just paid up for membership, decided after 10 years of not being able to work i should at least get the family history sorted out for everyone!

I had my first look at the boards and this thread grabbed me. Diagnosed with (severe) M.E. for 10 yrs since collapsing but had it for 24/5 yrs since early teens and BCG jab. Although i have the worst docs going so no help from them (despite carers as i also live alone!)

Liz mentioned aspartame, when i was good enough to notice changes i always found MSG's were very bad and led to a very significant loss of energy.

MEgirl - any instructions for the epsom salts bath (quantities etc)? i heard my rugby teams players use it for deep muscle relief and skin detox so got some last week but the only instructions on it are for swallowing it!