hello this is my first post! well i t... - Fibromyalgia Acti...

Fibromyalgia Action UK

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hello this is my first post! well i think it is! I joined tonight ... so i thought... FibroFog... dont u just love it.... ????

feduplisa profile image
17 Replies

When I tried to start an account here tonight it said that I already had an account, Im like nooo way, so because my memory is sooo bad I used my one and only pass word. Low and behold here I am... and for the life of me I cannot remember joining before tonight! It's scary when your memory is this bad. Im about to start a new med tomorrow Pregabalin, Im already on the usual according to the lists... amitriptilyn and also topiramate - been on these for 17 months from when i was first diagnosed... its definately getting worse :( the meds are good but have to increase after a while as I get used to them. At the moment I am having more blood tests as maybe looking at possibly having shergrins syndrome ( thats how u pronounce it) not how u spell it! Im a bit annoyed by the attitude of some doctors who presume that this illness is "all in the mind" I can appreciate that the mind is a powerful thing but these are very physical pains we go through all day everyday yes some situations may trigger off the problem, but im finding that nothing has triggered me im like it all the time and dont have a day off - I may have a day where the pains more manageable but not pain free.... they should have a day in our shoes....

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feduplisa
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17 Replies

here here they should have a day in our shoes or have a wife/husband close family memeber who has fobro then they may change their minds !!!! but i must say i am very lucky my Gp is fantastic with mre and totally understands love to you and welcome back lol if you can remember to sig nback in and read your comments ha ha love diddle x

Butterfly54 profile image
Butterfly54

OH feduplisa,first off welcome again hun I do remember you from your first try.

You silly billy you lol, you have made my morning starting it with a giggle even if it is at your exspence with the fibro fog.

You may have Sjogrens (pronounounced Shaw-GRINS) I have this along with the fibromyalgia and so much more that would bore you if I said.

Can I ask if it is your G.P saying this or are you under a rheumatologist and what make them think you have this.

Our war cry on here is "CHANGE G.P`s" if you are being treated as if it is all in your head because it isn`t.It`s very real to all of us.It is recognised by the world health organisation, just not by some ignorant dr`s who are really when you think about it disagreeing with a hospital consultant that they sent you to in the first place.

Unfortunatly if you trawl through some of the blogs DLA have a big problem with it also.It is all so damn unfare when you think about it.

Who in thier right mind would choose "IN THIER MINDS" to live or for some of us exsist like this.

I know which life I would rather lead,going out without thinkining about it,a damn good night sleep,up with the lark and off to work,thats not asking for much is it hun.

OH yeh and the big ask A PAIN FREE LIFE.

Well that`s my welcome rant over and done with,you have come to the right place for help,understanding and now and then a good laugh.

Love and Hugs to you and good luck with changing g.p`sxxxxxxx

Absolutely agree with you, give them a day in our bodies even!!!

Butterfly has - the one you mentioned that I can't spell either :) Sjorgrens???? And also I believe Lyn who is a moderator has it too so there will be posts about it on here.

Have a good day if possible x

Butterfly54 profile image
Butterfly54 in reply to

Morning sue yes I put a welcome rant for poor feduplisa :-P

in reply to Butterfly54

Morning hun, take it easy xxxx

Belle67 profile image
Belle67

Morning and welcome again,

I am not on here on often as my doc has lowered my pain meds to almost non existant so am in constant pain and so tired all the time :(

But i am in the process of changing doctors so hopefully i will be able to join in more and follow everyones post on here.

I was on Gabapentin and it worked well for me for quite a while, I hope you get some relief from it xx

Sarah-Jane profile image
Sarah-Jane

Welcome back - its good to see I am not alone! I have tried to register for several things only for them to tell me that my email address is already registered! I do feel silly but now I know its fog!

By the way, how can this all be in the mind if we have never heard of FM before but have the same symptoms as someone else with it?

I am on Amitriptilyne and Pregabalin. Both are helping at the moment although I am slowly creaping up in my doses. I have co-dydramol for breakthroughs, but try to do without as they are not so good for you and can be addictive. If I am addicted to anything it is pain relief. A couple of times I have ignored my alarm telling me to take my meds and boy do I pay for it! Sadly it usually means I cannot recall if I have taken it or not so I cannot then take it! Silly isn't it! I have to hang on for the next dose. I simply must get one of those medication boxes that allow you to measure out the meds for a week!

Currently I am coping with a painful back, part FM and part caused by physio.

You take care and maybe enjoy some sunshine?

Soft hugs

woodbon profile image
woodbon

I can totally relate to loss of memory, sometimes I frighten myself, because I'll do something really stupid. At the weekend my husband went into the kitchen and opened the cupboard and asked me why I'd put the ice cream (luckily one of the plastid carton type) on the plate rack in the cupboard under the worktop! For a while I really felt frightened but in the end he made me see the funny side - I didn't know whether to laugh or cry - I did both, but the laughter won in the end, thanks to my lovely husband.

Stefi profile image
Stefi

You've made me smile too feduplisa but I AM new so if you were on here before I wouldnt of known, actually I prob wouldn't remember even if I wasn't new - now I have confused myself just trying to work all that out lol

it's comforting to know that it's not just me that has these memory lapses, it sounds like we all do. It's something my doctor really can't understand although they are pretty understanding & sympathetic about the pain side of it.

The things I do make my teenage daughter quite exasperated, the thing is I often don't remember what I did anyway ! lol

take care and keep your chin up

gentle hugs

Stefi x

bumblebee57 profile image
bumblebee57

Errrrrr....I just did exactly the same !! Dont remember.... It is a bit scary, but I laugh at myself or I'd go completely looney. Im on 2 or 3 sites like this and I find them really "comforting". Firstly because people KNOW what Fibromyalgia is.You dont have to explain, leaving bits out coz you forget half of it, making people think "its all in your head". Id like to see them change their mind if THEY had it. Soft hugs,(even tho you might forget !! But I wont mind..)Hope you have a good day. Carol Bee

dgbnlm profile image
dgbnlm

I JUST HATE IT WHEN THE MEMORY DOESNT FUNCTION,it hard to comunicate with others with my family now they guess wot im trying to say just the word wont come out i somtimes have to play charades to try and get wot i mean over its total madness thot the new tablets would have improved this but no im giong to start writing things down like turn cooker off ,bath running hoover switch here lol wot can we do x

jazher profile image
jazher

Hi feduplisa,

Its good to meet you, i hope you like this site as much as i do. You will find that there are so many people on here with memory problems hun, you did make me laugh by the way. :)

kel xxx

Hi peoples! What is a memory, if I had one of these things Im not sure where its gone. lol xxxxxxxxxxxxxxx

Ang01 profile image
Ang01

Well Lisa, let me tell you you are not alone with your memory, I began to think I was in the early stages of dementia when I couldnt remember things. There are times when basic words dont come to my mind although I can picture the item I am trying to talk about in my mind!!!!. I also keep to the same password as I find that easier to remember although when it comes to pin numbers I quite often get caught out when trying to enter them correctly. I am lucky that there is one very patient till operator at my local Morrisons who now knows me otherwise I think I could well be arrested for using stolen cards lol. Anyway, its good to have you on here again and be able to share these distressing symptoms with people who understand and can have a laugh about them xx

Sammicat15 profile image
Sammicat15

Hiya Feduplisa! Am surprised you didn't call yourself Fibrofog but you did make me giggle lol.

We're all guilty of mind fog. I just blame it on being blonde :-D my BF is getting used to it and just rolls his eyes now.

As for FM and how it's regarded, I've been called a hypochondriac in the past. There are those who like to live a life of illness, but I'm pretty sure that most people would rather be getting on with their lives pain-free and enjoying themselves properly, rather than living with what FM brings. Smiling through pain takes courage and determination, but it's bloody exhausting!

When I was out with the BF in Looe a few days ago, I knew I'd hobbled too far and so I started counting 1-2-3 and my BF thought I'd lost my marbles. All I was doing was counting a mantra and concentrating on it until we got back to the car. The penny dropped with BF once I'd collapsed in the car seat lol.

feduplisa profile image
feduplisa

thankyou all for your lovely welcome! and Im so happy to meet you all... Im shocked at the response my blog has received! I didnt think anyone would respond :) I sometimes wonder what is happening in my head, and it can be so scarey, forgetting simple words is not nice and yes I too have to play the charades game to just get to say the one word that evades me! My mom has this condition too, she was diagnosed after myself.... Im worried my daughter who is almost 21 will now also follow in our footsteps.... Its something I really dont want to pass on. I love this site, its great to know I can talk about things and not have to explain all the reasons behind why im so down, or in such pain or dont want to go out.... Thank you all xx

suenew profile image
suenew

Hi i know how you feel i went for a medical with DWP ,he kept asking questions god did i feel thick,dont know how i got on.

Wish we could stand up and be noticed.

We want our lives back.

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