Fibromyalgia

SuzySF

Hi..I've just been reading the postings re FMS, my OH had FMS diagnosed 2 years ago - eventually - but we figured he's had it since he was a teenager - triggered by an accident. There are lots of random extreme pain for no apparent reasons!!

Like most here he was on anti-depressants, huge quantities of pain killers etc..but we were told of a protocol by a friend and FMS sufferer in Canada. It's been fromulated by a medical doctor who has specialised in FMS for over 40 years. The Guaifenisin Protocol. My OH started this in March this year, its not easy, and you have to be very strict with some chemicals ...BUT it seems to work. He has kept a diary and has had 7 totally pain free days so far...after about 15 yrs of constant daily pain.

He has applied for DLA on several occasions but has each time been turned down. He does not work as the FMS is stopping him working, he has worked out what triggers off the pain, where what and why so avoids doing things he knows will result in mega pain for up to a month.......

google - fibromyalgia dr armand or Guai protocol. there is also a big forum on yahoo groups UKFMS, they are a wealth of knolwedge and experience - all there are FMs some have had it for over 40 years....

this may help someone, but it is a difficult thing to follow you have to be 100% for it, or it wont work.

Hope everyone is'nt suffering too bad...but winter is here and FMS is aggrivated by cold so keep warm everyone !! (OH cant go down the chiller aisle at supermarkets..)

raeh

bigzippy wrote: »

Hi raeh
I agree - I often type complete nonsense, have to correct what I@m typing all the time. Forget completely what I'm saying halfway through a sentence.:rolleyes:
It's really annoying when people come out with "yeah I do that too, it's normal" type thing - cos they don't actually realise that there's a difference between "normal" forgetfulness and the "fibrofog" forgetfulness.:o
How did you manage to get mobility but not DLA? If you're struggling to keep hold of things and are clumsy/dropping things then you should put that on your DLA form - if you can't hold something like a pan of hot water or a bag of spuds then that all counts, as it goes towards your ability to prepare and cook a main meal for yourself - if you can't do that you qualify for the lowest level of DLA care, which amounts to about £17 a week. I managed to get this part but not managed with the mobility or any higher levels of care...I'm thinking about appealing - which at the moment seems like a massive hassle :mad:

i will apologise before i start typing as i have had a long day with family visiting and am tired and have a total foghead on, the kids have just given up of me actually finishing a sentence

bigzippy i have just started to receive my 3rd lot of 3 year dla payments, so have been receiving it for 6 years previously but evn though i fill in the application to say i have huge trouble lifting any pans and cant lift big ones, i sit to chop veg etc, very clumsy dropping things etc, i also have to have help getting out of bed in the night when my back is bad they always say i am entitled to no care component as i can prepare a meal for my family, no matter how much of a struggle that may be! I do receive the high level mobility component though as when it asks how far i can walk before in pain i put 0 as i am in constant pain!

i agree that people dont understand the difference between fms pain and 'normal pain' , my neighbour yesterday asked if i was ok as i wasnt walking well and i said my back was particularly bad and she said oh i know how you feel my backs aching today :doh: no point saying anything else lol

i now cant remember anything else i was going to reply to :rotfl:

im going to look for the spoons thingy people have talked about though

im finding this thread better than any support group i could go to ... thank you everyone :T

raeh

oh remembered what else i was going to say i live in crocs as they are so comfy and i can slip them on and off

redbull08

does anyone like me with FM
have skin that is dry & looks older?
I think my muscle tone is 10 yrs older than me
also eye problems, like glassy eyes that wont clean in the morning? (no I dont have real glass eyes) they feel they need cleaning, I go for glasses then they never do me properly

sharon59

a lot of us seem to have dry horrid skin and sounds like you suffer from dry eyes-another common thing-you might find eye lubricating dros/artificial tears make a big difference.I use them and if l forget for a day or so my eyes are horrid and lm peering thru my specs that are foggy!

natzini

Hi all
Had a good one today energy-wise, my pain was quite bad though so stuck the TENS on, oh and I woke up with a migraine, lovely! Going to bed soon as I've got a very early morning.
You lucky people with baths. We have a bath, but no hot water to fill it with. Our water heater has broken and the plumber who fitted our shower today said it's prob the old electrics it has been fitted with.
Nighty night x

raeh

Good morning to all my lovely new friends Its a very white, frosty cold one here. I have been up quite a while to get myself up and mobile as i am taking the kids and a friend each bowling [thanks to the lovely mse telling me we can go for 1p:p ] So i am starting the day with a positive attitude...today WILL be a good one :rotfl:

i hope its a good day for everyone xx

deptfreemoneytart

Hi Ladies
It's not just women who get FM, I was diagnosed in June 2008 although I've probable had it for 23 years since I was the victim of 3 armed robberies in 6 weeks, at an off licence I used to manage. None of the 7 doctors at my surgery recognised my FM and during the last 6 years I've had dozens of tests, seen numerous consultants and even had 3 surgical procedures. This has cost the NHS an absolute fortune not to mention the private consultants and body scans that I've paid for. Then the money paid out by Benenden Healthcare.
All this because most doctors are not able to recognise FM, and if they do they don't know how to test/diagnose for it, one of my doctors actually admitted this to me after I'd paid privately for a diagnosis. I first phoned a GP service that is available to Benenden Healthcare Members and after giving the GP my systems for the past 6 years he suggested that I had Fibromyalgia. I immediately looked it up on the Internet and it was like looking into a mirror, I had or had had every system bar one over the previous 3 months.
While reading up on the Internet, I came across the name of the most eminently qualified person on FM in the Country, Professor John E Davis.
I enquired about seeing him on the NHS only to find that he is the only consultant in the Country that holds a NHS clinic, which is at Guy's in London.The only problem with that is his waiting list for this clinic is 13 Weeks.
So I phoned his private practice and saw him within a week and was diagnosed within 15 mins. For the Lady who wanted to know about the Prof. I can recommend him without a moments hesitation, I saw him weekly for 6 weeks for injections then sadly it became to expensive for me to keep attending. I'm in the process of getting my own doctors to supply and give me the injections on the NHS.
As far as the pain goes, and as you know we all suffer in different ways, it helps if you stand under a hot shower for 15/20 mins. both it the morning after getting out of bed and again 3 hours before bedtime. this may not help everyone, but it helps me. Also try booking into the special rooms at The FORTINA Spa Hotel in Malta, room 534 was to die for. They do special rates in winter, but book direct. Info. on the web.
I'm 61 years old, I haven't worked for 2 1/2 years due to severe fatigue, I get Incapacity Allowance, DLA (lower rate) and am still waiting to see if I can get Pension Credit. Fortunately I'm supported by my lovely wife (42 years married today) but it probably means she will have to work past her retirement day in Dec.
That is the hard bit for me.
So, many plans that won't come to fruition.

beeka

Afternoon all! After all I said yesterday, I managed to get a lie in this morning - first in months! :j In quite a lot of pain though and through the night due to the cold snap - it was snowing as I went to bed - so wrapping up warm and making a pot of tea in a minute :T

@big zippy - thanks for the urls! I'm gonna have a look at those because like raeh I have regular crocs and a style that looks like a court shoe iyswim? and they are so comfy, but obviously no good once you're faced with rain or snow as they have all the holes in them :rolleyes:
The Wii Fit is definitely worth it as long as you're going to stick to using it long term - if you find it hard to form a habit or stick to a routine you'd probably be best off going swimming or walking when you feel up to it. (Swimming is ok as long as someone can take you there and back otherwise you end up falling asleep on the bus...) :rotfl:

@SuzySF - welcome! I've just found some sites re the protocol so will make my pot of tea and have a good read

@ raeh - I agree totally, this has just blossomed into a lovely group :T
oh and hope you have a great day too!

@ redbull and sharon - I get the dry eyes thingy and my skin has become more and more sensitive over the years, although I look very young for my age (mum's good genes!) but my skin and eyes can become very sore. Thanks for the tip Sharon!

@ natzini - hope you get your bath sorted soon, wouldn't like to be without at this time of the year :eek:

@ deptfreemoneytart - welcome! and don't worry I don't think anyone expects this thread to just consist of females I had no preconceptions in terms of who gets fibro as I had never 'met' anyone with it until this thread! Anyway thanks very much for the recommendation of the specialist - it seems there are a few but not very many so I'm not surprised at the waiting list.

Have a lovely afternoon everyone and keep warm and snuggly
xxx

deptfreemoneytart

Sorry about the female remark but I only read the first two on page one. I've since sat and read all 6 pages and it's not just women who cry.

You all have the best day you can.