Hi lovlies

[jaknolly]

Hi lovely people. My name is manda and im 55 i was diagnosed 16 years ago with fibro but it seems much worse these last few months... hope to chat and swop tips with people that understand. 😊

[xLaydieeeBx]

Hello,

I am truly sorry that it has been worse lately.

I have to say this forum is such a lovely place to come to for help and understanding. I have a lready made lots of friends that I can honestly share things with.

I hope you feel better (as possible) soon.

Hugs,

xx

[TheAuthor]

Hi jaknolly

Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of rueful Fibro information:

fmauk.org/

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

[catlady123]

Hi sorry to hear of your problems,i found this site a few weeks ago and so wished i'd found it sooner,it's so nice to have people know exactly what your going through and ways of making the pain easier.Also some of them are light hearted and make you smile i do hope your day is easier and less painful and we're always here and i'm sure whatever your problem someone will help ease it or at least bring a smile to your face xx

[jaknolly]

Thanks Ken for the link i will certainly check that out. Thanks everyone for your replies and good wishes.

I have got a meeting with work on Wednesday as i have been off all of this month, feeling as i do there is no way i can go back yet 😕 yet i cant afford to stop working...

Hugs and best wishes to you all x

[Hidden in reply to jaknolly]

Hi jacknolly- from Nurse Gladys Emanuel (open all hours) stay with the forum for advise of how to get help with income and finance should you need to stop working, its very interesting to trawl the sight and find the most amazing people with such knowledge and knowhow..

[Gurney3 in reply to jaknolly]

Hi JN.....must be really difficult holding onto a job, with the debilitating symptoms of Fibromyalgia....only folks who have it have any real understanding, which os why this Site is so good.

Fortunately, I had a really sympathetic boss in the Pharmacy where I worked and he helped me take early retirement at 58. I really miss the face-to-face contact with lots of people and the mental stimulation tho.

It may help, before your meeting, to hot down your main symptoms (e.g. Taking a while to function on waking, bouts of fatigue, etc). Perhaps it may be possible to negotiate a change of working hours, or perhaps do some of it at home? (Depending what your work is, of course).

Let us know how it goes.....

Sending positive vibes

Looby 👌🌈🐱

[jaknolly in reply to Gurney3]

My boss has a friend with fibro so does understand. Im not in the meeting with her though its the boss above her.... its just very busy were i work was doing around 15,000 steps a day and making 26 beds that is just a small amount of my job. my hands hurt way too much to do that now.

Dont think i can go back to it. Im wondering if i was making myself worse in the long run....i come home in horrible pain most days and so tired...this flare up just isnt getting any better.

I will def jot down some things though for when i go in that is a really good idea thankyou x

[TheAuthor in reply to jaknolly]

x

[211996]

Hi I've had fibro for 19 years.I'm in the same boat it's getting worse I'm tired and ache in the mornings it's always hard to get out of bed you force yourself to get up and hands feel like sausages.

[Gurney3 in reply to 211996]

Toes too!!

[jaknolly]

Bless you it is awful isnt it? Yes my hand and from my knees down are burning hot( not to the touch though) and feel really swollen and so painful.

Can i ask? Do you work? Im on the sick atm got a meeting on wednesday im wondering if they will be understanding....

[BlueMermaid3 in reply to jaknolly]

Hi jaknolly

I just wanted to welcome you to our lovely forum and introduce myself. I am part of the Admin team.

I was wondering whether you have a Union where you work or an Occupational Health Department. If so, it would be a good idea to get them involved in your meeting at work.

If you have neither of these may I suggest that you take a colleague into your meeting to take some notes?

I am going to give you a link to Janet our benefits advisor. She is very knowledgeable and I'm sure will be able to give you some advice for your meeting.

Here are her details:

healthunlocked.com/fibromya...

Good luck and keep us posted.

Wishing you less pain and more peace

Lu x

Administrator

[jaknolly in reply to BlueMermaid3]

Hi, thankyou Lu 😊 i have been asking my line manager for months to refer me to occy health so i can maybe do lighter duties that was before this latest flate up. Needless to say she didnt refer me! But yes its a good idea.

Thanks again x

[BlueMermaid3 in reply to jaknolly]

If all else fails I would get the CAB involved my friend.

It is so hard to fight for our jobs on our own.

Personally I think we need some extra support at these times.

If you at least have a colleague in with you, you then have a witness to what has been said.

Don't hesitate to ask me anything on your mind. I don't have all the answers but I have had Fibro/CFS for 30 years, worked for 34 years and been a member of the forum for 4 years.

Sadly I am no longer able to work and so that's why I try my best to help our forum members where I can.

It takes my mind off my pain for a while.

Be kind to yourself.

Lu xx

[Trikki]

Hi jaknolly....Perhaps you could print off the fibro symptoms from the site Ken gave you and take in the last prescription you have with all your meds on. I am sure that they will at least feel some sympathy for this rotten condition. Hope all goes well and do let us know how you get on....I am retired so don't have those worries about getting up for work, but seriously if I was working age I don't think I could do it.

Trikki

[jaknolly in reply to Trikki]

Hi trikki, yes thats a good idea thankyou. 8 years till i retire wish i could win lottery lol! Actually i dont even do it 😁 x

[Dad24]

I have now been put on patches that has helped mine had got really bad over the last few months to Wat meds are u on

[jaknolly in reply to Dad24]

Hi dad24 im on gabapentin and citalopram. What are the patches?

[BlueMermaid3 in reply to jaknolly]

Hi again!

If you cannot manage your pain go back and see your GP and ask for a medication review.

There are lots of different meds you can try. If Gabapentin is not working for you, you can ask to be switched to its sister drug Pregabalin.

Some patches deliver a certain amount of morphine during the day. There are different types.

Lu xx

[jaknolly in reply to BlueMermaid3]

Hi Lu, i was wondering what the patches were... ive got an appointment with doc for 31st she is on holiday until then. I will certainly talk to her about that. Thanks for all your advice. I especially like the bit where you said be kind to yourself. That is the hardest thing isnt it? Im always pushing myself. I have just seen the poem that was posted how true. X

[BlueMermaid3 in reply to jaknolly]

There are various patches. The ones I tried were Brutrans patches but unfortunately they didn't touch my pain.

Getting the right set of meds is very much trial and error and what works for one, doesn't work for another.

I think you're quite right. Most of us give ourselves a hard time and beat ourselves up about everything.

Giving yourself "permission" to be kind to yourself is very important.

Please try not to push yourself too hard.

Take care

Lu xx

[Dad24 in reply to BlueMermaid3]

It is BuTrans 5 micro gram/hour hope u ok I have put a pound on tonight 😭Wondering wether it is gapapentin as everybody saying it puts weight on xx

[jaknolly in reply to Dad24]

Oh my i have put 4Lbs on in the last 3 weeks! Thought is was just because ive been less mobile but now i dont know... thanks for reply take care hope you have a peaceful day x

[Dad24 in reply to jaknolly]

I've been on a diet lost 2st2 pound and I'm on naproxen but every one different Wat is your gram of it xx

[jaknolly in reply to Dad24]

Cant remember off top of my head but im other tsblets too. I really must try harder. Well done though you how are you losing it? Xx

[Dad24 in reply to jaknolly]

I will tell u tomorrow cause upstairs and packet downstairs

[Dydy-gabb]

I agree this is by far my favourite online forum. I read all post every morning to cheer me up. Knowing that you are not alone does help enormously. I hope you find it meaningful as well. Take care

[Matrix]

Hi manda , welcome to the fibro family . I'm sorry you have this horrible thing. I have had it since I was twelve over fifty years and mine has got much worse , my osteopath thinks it's because I'm worn out and I agree . Do you know about pacing and not over doing things , so I do this if I'm cleaning or anything around the house , I will work for 15 mins then rest for 30 . Then carry on it's the only way I can do it as if I over do it I get in a bad flare . If you have any questions ask away . Looking forward to getting to know you . X

[peck]

Hi and welcome! ! I to find the older I get the worse the pain is... not sure if that's proven or just me.Have s good day. Peck.🐤

[jaknolly in reply to peck]

Hi Peck 😊 yep maybe that is the case! Thankyou hope your pain isnt too bad today x

[fenbadger]

Hi jaknolly and welcome. You've had plenty of responses with links so I'll leave you to get on with them. Both my line managers have family with fibro, but it doesn't seem to make any difference.

You'll find plenty of chat on here and lots of good suggestions and tips.

[jaknolly in reply to fenbadger]

Hi Fenbadger thankyou 😊 i will let everyone know how i get on i do feel bad letting everyone down at work 😕

[fenbadger in reply to jaknolly]

Isnt that a pain? A sense of duty is a go thing but please don't forget your duty to yourself. If work decide they no longer can cope with your reduced ability they may decide you have to go. As mine did with me, despite their own occupational health department's input.

As BlueMermaid3 says above, Can you take someone with you to the meeting. You are allowed to. Make some notes before hand perhaps, though its difficult to anticipate their line. They are obliged to make some attempt to make adaptations for you. See if and how light duties get on. I'm in a similarly physical job. Light duties may not be possible. Are there opportunities for redeployment?

Do tell them about any dealings with doc. It may help to be up front without necessarily compromising your confidentiality. It certainly helps to show you're engaged in your own problems and solutions.

Good luck

[Hartleyhare2]

Hi and welcome! It's stated that fibro is not a progressive disorder but I don't entirely agree with that. Some of the symptoms have got worse for me especially my neck and shoulders plus the area above my knees perhaps it's age as well but I have definitely lost muscle mass from lack of exercise.

The idea to jot a few notes down or outcomes you would like beforehand. I would let the big boss say their bit and put their cards on the table first. Also at the end of the meeting you don't have to agree or disagree but ask that you sleep on it overnight. That way no knee jerk reaction and you can discuss it with others. Usually it's management insisting on you going to occy health not the other way round so that's still an option for you.

Best of luck

Patrick x

[jaknolly in reply to Hartleyhare2]

Hi Patrick, mmm i dont agree with that mine is definately getting worse i had a fall in march and my legs have hurt muchmore since then plus my hands hurt and burn all the time besides every other pain ect...

Good ideas there thankyou for that.

TAKE CARE 😊

Manda x