How can we explain the symptoms in one go? Huh damned if I know!...

[Flips]

I don't know about you guys but if I try to explain how I feel to someone I tend to go on how I feel THAT day but for me it changes daily!! One day I might have swollen bleeding gums, another a headache from hell! another I cant walk cos the pain in my joints is unbearable...but then so is staying still! Then another day I will have itchy skin then I will be sweating like a ??? some nights I lay there wide awake n cant sleep or just keep waking up all the time for no reason and many times I fall asleep where ever I am! AND ....well no I wont bore you all with variations because Im sure many of you know! I just enjoy the days when I feel almost human xx Hope you all have a 'good day'

[Hidden]

Hi Flips,

I'm from Leeds originally too. Well, Otley actually.

Anyway, yes, it is different every day isn't it. I'm 'lucky' cos I'm nowhere near as bad as everyone on here but I was diagnosed with fibro last August. I have terrible joint pain but I know I can't blame it all on fibro as I've got osteo-arthritis too.

I find it really hard explaining to people what fibro is, I printed something off about it and carry it in my handbag and if anyone really wants to know, they get it shoved in ther hands to read

Take care,

Sue x

[MrsW in reply to Hidden]

SNAP !!

[Hidden]

Yes you same as all of us you have to get up and see how you are that day and what hurts lol , i know i struggle to tell people how i feeel and how it effects me as they are looking at me and you can see there minds thinking well you dont look ill you look how you always do so how can thayt be right they must have it wrong . oh well you take care and hope you have a good day love to you diddle x

[ldjboothby]

Hi,all yes it's variable,yesterday my left leg was very bad, not so bad today, now it's the right hip, and chest. The pain in other places remains constant due to arthritis and osteoporosis, consistency of the pain is my criteria for thinking something else might be wrong,have a good day--sun coming out here.

[angied]

im the same sometimes my wrists are so bad i wear bandage straps on them when at work the next day they are better but my hands swell up so i bandage them up i do this so i dont knock them to much at work, then a few days later itll be my hip and i have trouble walking,work collegues dont understand but say it to the customers they know about it i just say it hurts all over

[Butterfly54]

I`ve got to tell my g.p in a few hours time that it`s now my left shoulder that`s doing stupid things.3 weeks ago it was the right.You got to laugh a bit or you would spend all day in tears.

I am actualy seeing her about something more important was just being playfull. but yes I think we all have that.

It`s trying to drive us MAD.

Hugs and hopefuly a decent day xxx :_)d

[Flips]

yep Im with you all on this, ive (as far as I know not got Ostio etc... but my Mum has!) So who knows, when Drs are bored of me Im sure they will do more tests ahha. Ive not had many tests apart from bloods taken, but I have underactive thyroid so they are checked regularly. Im on Tramadol, Naproxin, Paracetamol (highish dose) Thyroxine, oxybutanol and prob more But foggy brain makes me forget, then when I remember (hours or days later) I will blurt it out and people look at me as Im a complete nutter!! (they wouldnt be far wrong)

[lynz in reply to Flips]

to the people that dont really want to know but ask i say "have you ever had a really really bad flu " when they say yes ,i say " well then, times that by 20 and thats how ifeel most days " it usually shuts them up lol

[Flips in reply to lynz]

ive tried that and I get no im never ill, I just say well ya dont know ya born!

[ldjboothby]

One of the good things about growing older with this complaint -is your friends catch you up re forgetfulness, I've got a few that have actually overtaken me,but then I'm long practiced at coping strategies.

[Flips in reply to ldjboothby]

this made me chuckle

[Sarah-Jane in reply to ldjboothby]

I love your attitude. Think I may borrow it - i.e. one day you will know!!! Take care.

Soft hugs

[gypsycrafter]

my problem is trying to remember all my symptoms when i visit the doctor. I now go armed with my diary to which I add symptoms of that day (if i remember!) and now compiling a list at the front of all of them. sometimes i write in any different foods in case there is a reaction. to jog my memory it is useful to write something memorable that happened that day ie conversation, someone i saw/did. have a good day all xxx

[Flips in reply to gypsycrafter]

I have written down symptoms before also. I gave them to my GP and saw his hair turn grey just reading it hahah He asked me if I had any other medical problems of which I replied..oh yes, Depression! his reply was 'Im not bloody surprised! I'd be depressed having this list' haha but now I get embarrassed by it, I dont know why suppose I feel like I'm moaning when I write it down :/

[Sarah-Jane in reply to Flips]

Flips, I recently wrote everything down in great detail to update my doctor who I hadn't seen for a while as meds are doing their job [up to a point]. He was pleased to get it but now I need to get a diagnosis from the Rhuematologist, so I have cut it down for my doctor to send to him! I am really pleased to have gone to the trouble as it kind of backs up my reasons for things. Don't feel down about it. You are not saying everything happens at once and you are not lying. So you are not a hyperchondriac! Take care. Soft hugs.

[gypsycrafter]

I have visions of a young gp with beautiful dark head of hair, draining white! ha ha!! A friend of mine was in hospital after a breakdown (many years ago) and she told me she was taught to write everything down - well i dont go that far. she had lists all over the house!! we all need a moan now and then honey. anyway it is going to be another lovely day so i hope you enjoy that as i will! xxx

[Sarah-Jane]

I was asked by an Occupational Health Advisor what Fibromyalgia is. I began to explain but was cut off and told no, Fibromyalgia is muscle weakness. My doctor was shocked and said she was confused with ME. This woman holds my future at work in her hands and doesn't even know what is wrong with me!

Maybe I should have been stronger and explained better, argued the point, but I didn't. I wish I was emotionally stronger or had it all written down for her.

You keep strong and don't be bullied like I was.

Maybe, answering your question, you could write up a shorter list of what FM is generally rather than specifically - and then if its someone just curious you could show them that and say you have a lot more symptoms and they all come and go in different combinations and levels of pain?

Take care.

Soft hugs

[MrsW in reply to Sarah-Jane]

I have been to an Occupational Health Advisor today,booked by my workplace,she is going to write a report which will tell them I have to 'pace' myself,which is what I have beensaying to them for a while,I expect that they will listen to her because she's an 'expert'on how I feel !!

[Flips]

Thnx guys. One of my Drs gave me a specific print out for me to look at and for a while I kept it to show people. I dont have it any more but there other sites that I could print off. However, when I read these things I think 'yeh thats what I get, omg thats me' but then I also look and think 'it isnt THAT bad... sometimes!' we have a great ability I find to 'forget' our bad/worst days because we are greatfull for some normalish days! in my experience anyway. Right now im hating the dizzy spells and jumpy limbs, sore neck and.......I know theres something else but Ive forgot...OH YES remembering things!!! Have a great day in the sun guys xx

[Sarah-Jane]

I am really pleased your Occupational Health Advisor was friendly and helpful. I hope your work listen to her.

I am further along than you it seems as apparently there is nothing more work can do for me and its up to them how long they can put up with my absences!

Also I hope that my situation does not become yours, but keep a note of everything just in case.

Big hugs, soft ones

[Sammicat15]

MrsW, am glad for you that you've got a supportive workplace who arranged your appt with the OHA. I hope something good comes of it.

Sarah-Jane, I hope your situation works out for you. It must be a worry.

I worked for a firm of solicitors and was virtually tied to the keyboard with the boss dictating, over my shoulder, hundreds of emails a week. I kept asking for comfort breaks and really had to fight for them each and every time. It was exhausting and stressful. The boss was really testy about it and in the end I came to a standstill. I left the firm after taking 6 months sickleave! Haven't worked since.

[feduplisa]

I was given an explaination that it was a chemical imbalance in the brain, that affects the nerves in the body, around the joints and makes you more sensitive to pain. I wish that was all it was eh??!!! At my workplace they swap my line managers more frequently than I have migraines! and thats regular!! when the new one takes over I have to go through the whole process again about FM and they again look like yeh yeh nothing wrong! So I just print off a copy and tell them to read it. show them all the tablets im on and hope they understand!!

[suenew]

Im pleased i read your message,my gums are swollen and bleed,get a horrible taste in my mouth,im learning so much from all you good people.

Nice to be able to support and help each other.

[ZoeH]

Some times i will happily explain to people what Fibro is but sometimes i do get incredibly fed up with explaining myself. The easy way i have found to explain what it is is to ask people if the know what ME and MS is. Most people know about these illnesses and i just say it kinda sits in the middle of the 2. Its worse than ME its not as bad as MS. I usually find that's enough of an explanation for people to get the point.

[Flips]

Yes it sounds right sadly thank you I shall copy this x take care

[Flips]

Good point ZoeH! Funny tho we get an 'ahh' and an 'ohh' with the other two but with FMS we get a '? oh right! ?' AGGHHHHH!!! oh well, we can but struggle on! Yesterday i felt good so I took my poor neglected doggies for a walk, I got so far (quite far till I realized I have that distance to come back too!)

But then as we were playing fetch the migraine kicked in, dizzy spells, feeling generally ugh and my tennis elbow decided to flair up! (worsened by the dogs pulling for a poor Pheasant!) Then I looked at how far Id walked and the distance back seemed to quadruple at which point I think I HATE this body