Hi I'm new on here and currently having really bad flare up

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Hi I'm new on here and currently having really bad flare up

Postby Sarah_89 » Sun Dec 14, 2014 4:00 pm

Hi I'm Sarah and I'm 25 from Essex. I was diagnosed with fibro about 1 1/2 years ago but had symptoms since I was 17. I only had back pain & pain in the front of my ribs back then so I had an X-ray on my back & they said I had slight scoliosis but it shouldn't give me any pain so the pain was unexplained but I just thought the doctors were wrong & the scoliosis was giving me the pain.

My symptoms worsened over the years & the pain spread to the back of my ribs and knees. Then during Easter 2013 I was working extra hours at work. I work part-time in a shop 20 hours a week but cos it was the busy Easter period I worked about 36 hours for the 2 week Easter holiday period. I started getting pain in my chest, worse on the left side, which I'd never had before & it was affecting my breathing. I felt exhausted & had to go home sick from work. So I went to my GP & he referred me to a pain specialist. He requested another X-ray and when he looked at it he said I didn't have scoliosis, so I'd been misdiagnosed for all these years which was infuriating! He diagnosed me with fibro which I'd never heard of before & had no idea what it was but he gave me a leaflet about it & I researched it on the internet.

The symptoms described me down to a T like the brain/fibro fog as well as the pain & even down to the sensitivity to chemicals & perfumes, I had no idea it was all connected! It was nice to finally have some answers & know that there was a name for all these horrible symptoms I had & that other people were experiencing the same so I wasn't crazy or imagining it! The specialist put me on naproxen and paracetamol which helped quite a bit, but when I went back to him for a check-up about 6 months later he told me I had to come off naproxen cos I can't be on it permanently as it causes stomach ulcers so he told me just to take paracetamol.

Then at my next check-up another 6 months later he asked if paracetamol was helping & I said no so he put me on Dosulepin & told me to continue taking paracetamol as well. Dosulepin is an anti-depressant but he said I'm on a low dose & not on it for depression, its to help me sleep cos I'd said I had trouble sleeping. He said that fibro sufferers struggle to get into deep/REM/dream sleep & this will help with that & symptoms should improve. All this made sense to me at the time so I was hopeful that I'd finally found something that would improve my symptoms. I was also given an appointment for pain management.

When I went I saw a very nice, understanding sympathetic woman but all she actually did was give me a tens machine which she said is meant to block pain signals to the brain and release endorphins, the body's natural pain killer. Again all this made sense so I was hopeful that it'd work. However, the Dosulepin, although it makes me sleep better most nights, it hasn't improved the pain. I thought it had at first cos the pain in my knees got much better, but I've realised now that that's probably because it was summer and now it's winter the cold has made my knees bad again. The tens machine does absolutely nothing for the pain! I'm going back to see the pain specialist on 23rd Dec & I'm going to tell him Dosulepin isn't working & see what else, if anything, he has up his sleeve. I'm worried about being given strong pain killers though cos I don't wanna be drowsy cos how am I gonna work if I'm sleepy??? I'm seeing the lovely pain management woman on 2nd Jan to see if she has anything else up her sleeve as well.

I mentioned that I'm having a really bad flare up at the moment. Like I said the pain in my knees has got worse cos of the cold and so has the pain in my back and ribs. Last Wednesday I had to go home sick from work and since then I've been in agony with my back, ribs and knees. Can't walk very far and I'm exhausted, have very little energy and just don't feel like I can do very much. I've had to give up the studying I was doing at the Open University and just feel a bit depressed that fibro is stopping me from living a normal life.

I went to my GP to get signed off work & I saw a doctor I've never seen before. He must've been standing in for another doctor off sick or on holiday or whatever. He was a nice man but was trying to make out like he knew more about fibro than he did cos he said I seemed down and maybe just needed to be more positive and then maybe I'll feel better. Well I'm sorry but it doesn't work like that & as well intentioned as that advice might've been it was useless!

The whole idea that if you get to the bottom of what's causing the pain, like by having therapy then it'll somehow miraculously cure you is complete & utter clap trap! Yes I've had a lot of stress in my life like bullying & abusive relationships & it may well have caused or contributed to my condition but it is some Freudian mumbo jumbo that by 'dealing' with that psychological pain and 'overcoming it' or whatever will take the pain away! Cos it's basically saying that it's all in your head, it's psychological, but it isn't, the pain is real & we need to deal with the symptoms not the cause cos it's impossible to pinpoint the exact cause.

I also had a few falls when I was younger, maybe that's caused this pain & I had a really bad virus when I was 17 which started it all off & yes it was probably down to stress which weakened my immune system but saying you have to have therapy to go over all the rubbish stuff that happened in your life & it'll make you better is complete & utter nonsense! Anyway I got signed off work for a week, but I think I'm gonna need to go back to the doctor & get another week off work, maybe more.

I'm just finding it really frustrating that most people just don't understand what I'm going through :( . Although my specialist finally gave me some answers, I find his persona rude, uncaring and unsympathetic so I'm dreading going to see him next Tuesday. That GP I saw to get signed off from work just didn't understand & my managers and supervisors at work just think I'm putting it on and being lazy. One even threatened an investigation into the amount of time off sick I have when I went home sick last Wednesday which made me break down in tears in the HR office but they were understanding. Some people I work with are understanding but some aren't & just think I should 'get on with it' but they just don't understand how I feel & that I can't.

I feel like my body has just given up on me, I'm in so much pain and no matter how much I want to I just don't have the energy to get up early in the morning or do very much at all. I'm annoyed that I've had to give up studying cos if I could get up in the morning I could do some before I went to work in the afternoon but I always struggled to do this & when I got home from work in the evening it got to the point where I was too exhausted to do it then as well. The fibro fog was also making it difficult to concentrate. So I had no choice but to give it up.

It really frustrates me that I am very limited in what I can do and how much I can do but I guess I just have to accept this for the sake of my health and well-being. I have an understanding family & boyfriend but just feel very lonely at times, especially at the moment cos I still feel like no-one really understands how hard it is, how in pain & tired I am. I don't know if they think I'm exaggerating or that I'm weak & should just try & get on with it. I did try for years but it's got to the point where I just cant anymore. I think my body is finally saying enough is enough, you're trying to do too much so I've stopped. I was trying to work, study and still have a bit of a social life at the same time & I think in hindsight it was too much especially with having fibro.

My boyfriend & parents have said I was trying to do too much but my parents are saying that I should at least try & go back to work. They understand that I need a bit of time to rest but I know it's gonna get to a point where they say come on isn't it about time you went back to work now but I honestly feel like I need a few weeks off, maybe longer, I'm not sure how long to be honest. I've never had more than 2 weeks off work. So even their level of understanding has its limits :( . I think my boyfriend is the one who is being the most understanding & will support me however long I need to rest, I'm hoping he doesn't get fed up of it, I've only been with him a year & 4 months & this is the worst he's seen me. So I thought I'd come on here & share my story to people who will fully understand.

Thanks to anyone who's taken the time to read this & get back to me, it's much appreciated and I'm very grateful.
Last edited by FluppyPuffy on Mon Dec 15, 2014 2:38 pm, edited 1 time in total.
Reason: Split some larger paragraphs into smaller ones for easier reading.
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Re: Hi I'm new on here and currently having really bad flare

Postby denys » Sun Dec 14, 2014 4:30 pm

Hi and :welcome: to the forum, wow you have typed out a very long post and it may put some off from answering as long blocks of text can be very difficult for FM'ers to get through.

I'll try to answer each bit, it is very difficult for people who aren't familiar with Fibro to understand the effects it has on our lives (and for some who are familiar :!: :!: )

There is a post on here called 'One for the non-believers' maybe printing out a couple of copies and letting people read them may help them understand a little.

Going back to work, it is important to try to do a little each day but if you need a rest at the moment then don't feel bad about it, pacing is the best way forward, which is breaking tasks down into smaller chunks try to work for 5-10 minutes then sit for approx the same length of time, then repeat. (Sometimes you can go a little longer or you may need to sit a little longer, whatever your body tells you)

Keep a diary to show the pain management lady, detail how you are feeling each day, give your pain a score and identify which areas are affected.

Maybe when you make your next appointment with the doc you will get so see your normal one, that might help you. Don't feel lonely, you have found a place where we try to offer support and understanding, you may not be living the life you would have chosen, but try to think that you are just going down a different path. It can be just as rewarding maybe even more so in the long run

Anyway there is loads of info on here and using the search facility can be a good place to start or just post a topic and we'll try to answer any questions you might have :-D :-D :-D :-D :-D :-D
Denys

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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Sun Dec 14, 2014 6:03 pm

Hi denys thank you for your reply. I know my message was very long, I had a quick browse through other messages before posting & saw that people were writing quite a lot but I know mine is pretty long! I guess I just wanted to vent but I understand your point that some people with fibro might not feel up to reading it all & I won't take that personally cos I'd probably feel like that at times when looking at other peoples posts! We're all in the same boat & know how each other feels.

Thanks for your tips & yes you're right we don't always get to go down the path we want to in life so I guess what I'll try & think from now on is that I should just see what this path I'm going down in life is like & try to make the best of it cos things don't always go to plan in life. So I'll try to see things in that way from now on & that is down to you so thank you very much :) .

All the best.

Sarah
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby keaedmondson » Sun Dec 14, 2014 7:34 pm

Hugs Sarah! Try not to be so hard on yourself…x
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Sun Dec 14, 2014 7:46 pm

Thanks keaedmondson :) finding this forum a great help & support already :)
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby FluppyPuffy » Mon Dec 15, 2014 3:24 pm

:welcome: to our little sanctuary Sarah :cow-wave: :cow-wave: :cow-wave:

Whilst you had split your post into paragraphs, some of them were a little on the large side, so I've split some of them into smaller ones to make them a little easier to read. Quite a few of us on here struggle when it comes to reading larger blocks of txt,incl myself. Doing this gives us a better chance of making it all the way thru posts without getting lost and ending up reading the same bit over and over again.

Don't worry about the length of your posts too much, pretty much all of us have found at some point that once we get into a rhythm and start putting things down, it can just start flowing out, which can be somewhat of a relief when things have been bottled up for a while as, even with the most understanding of people around us, we do tend to hold back on letting everything out at times.

Wrt Dosulepin, which is also part of my cocktail, when I started it, my GP advised that unlike Amitriptyline and Nortriptyline which can help with sleep and pain issues, Dosulepin tends to just help with the sleep side of things, with little or no effect on pain issues unfortunately.

I also have Naproxen in the mix, and have been on it for a few years now. Whilst Naproxen, along with other NSAIDS, can cause stomach issues such as ulcers, it is possible to take them for the longer term. Something to help protect your stomach tends to be prescribed alongside them, quite often something that helps neutralise the acidic environment of the stomach, which in turn can help reduce the chances of additional issues occuring.

TENs machines can and do help some of us, but with all things FM~related, they don't help everyone unfortunately. FM is very individual in how it affects each of us, and what may make a difference to some can prove completely ineffective for others unfortunately. This is why it can, and is, so frustrating in trying to find what makes a difference to each of us. And then there is the time it can, and does take to find these things, what with trying different things at different dosages, and in different combos to find that elusive elixir.

As well as looking at life in the way Denys has suggested, rather than considering how limited you are in doing things, you could try turning it into looking at what you are able to do. Whilst it may not be for very long compared to how you were preFM, there will be things you are still able to do, so turning your focus onto that and what you have achieved when doing such things can help lift things, even for just a short while.

Anyhoos, have a bit of a looky and a read of some of what there is on here as you find your way around the place. Using the Search function will help you find topics and posts on subjects that have dropped down into where the DustBunnies dwell, which can be useful when you're looking for something that may not have been mentioned recently.
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Mon Dec 15, 2014 5:45 pm

Hi FluppyPuffy I see what you've done to my post & it looks a lot better now & easier to read so thank you :-). It actually looks like I've written less now as well in a strange sort of way which is good & I hope will make it more accessible for people on here trying to read it!

Yes that is exactly what happened, I just needed to get it all out & I did feel relieved after writing it! It took a while lol but then as I'm at home with nothing much to do or rather I'm not able to do much at the moment, also sitting round the house doing nothing was making me think a lot about stuff, about all the suffering I've endured over the last 8 years so I just needed to get it out & it definitely seems like I've come to the right place to do that! :-)

I do try to explain it to the people around me & how best they can help me & be there for me but of course cos they'll never be able to experience what I'm going through it's very difficult for them to understand. I do need to basically spell it out to them sometimes when all I wanna do is scream & shout in frustration at how much pain I'm in. I'm literally climbing the walls at times AHHHHHHHHHHHHH!!!! Sorry! But I'm glad I've found a place where I can let it all out to people who will actually 100% understand cos as much as I love my family & boyfriend & I think they're being wonderful & patient cos they're not just telling me I'm overreacting or it can't be that bad etc, they don't understand!!!!!!! I do feel that I'm probably making them feel under appreciated at the moment cos of all they're doing for me & I'm just a misery guts but I have been trying to tell them I appreciate it as much as possible amidst all the grouchiness!

Thanks for the advice on Dosulepin, I have been thinking that they are only to help me sleep but the specialist did say that sleeping better should help with the pain (well it hasn't!) I keep seeing all these names of different meds on this forum that I've never heard of :-? can you tell me a bit more about them? I mean the ones you mentioned, Amitriptyline and Nortriptyline? Do you take them the same as Dosulepin at night a few hours before you go to bed? Because something that helps with pain & sleep sounds like they might help me better than Dosulepin. Perhaps I could mention these meds to my specialist & ask if he can prescribe me one of them?

That's strange cos my doctor did prescribe me something else to go with Naproxen to protect my stomach but still said after 6 months that if I continue taking them I'll be at risk of a stomach ulcer so he said I'll have to come off them, which made me think that whatever I was taking with the Naproxen still wouldn't protect against stomach ulcers. And cos I'm in so much pain & if the other meds taken on top of Naproxen do at least reduce the risk then I'd be ok taking that risk. I'm beginning to think that my 'specialist' doesn't have a flippin' clue!

Yes like with a lot of things, everyone is different & what works for one person might not work for another. So it feels like a constant battle to me with endless visits to GP's & so-called specialists, who at times are not the most helpful, to try & figure out what treatments will work best for me. That in itself is exhausting & stressful, I have fibro I'm already exhausted enough & stressed enough from the pain! Now I'm just moaning sorry lol!

And as for my outlook on life, I think it's just happened so suddenly that I find myself unable to do things such as work & study & although I've had this condition for a number of years and lived with it, still managing to work albeit with the odd day off here & there cos I was in pain & one spell of 2 weeks off & managing to study on top of that for nearly 2 years & still go out a bit with friends & my boyfriend. Now I can't do that, not at the moment anyway cos my knees hurt so much that I can't walk very far & I don't know how long its gonna be until I can get back to that, I think its gonna be a gradual thing getting back to my 'normal self' or some kind of 'normality' that might be different from how things were before this flare-up. I think I haven't adjusted to it yet so I just need time to adjust.

Thank you for your reply and advice :-) x
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby dazzleship » Mon Dec 15, 2014 8:15 pm

hi Sarah

first of all :hugs: and welcome to the forum.

about work - I still work full time (and intend to stay that way :-D ) I think there is a valid point in people saying that you shouldn't be off work for too long. the reason being, the harder it will be for you to go back. you know?

I would suggest not giving up on the TENS machine yet - do you have one with different settings? I have one and I find that different settings help at different times. but I also know that it doesn't help with all of the different pains I have. I tend to use it for the 'crampy' sort of pains that I get in my legs, that make me feel like I don't know where to put them (if that makes sense). or for the shoulder pain too. so if yours has different settings you maybe need to try and adjust it a bit more until you find something that suits.

another thing I would say is don't waste too much time trying to explain to others about how the fibro really affects you. I've stressed myself out on many an occasion trying to find out how to explain to colleagues / bosses etc.

but you know what? I'm beginning to realise that it's a waste of time trying to explain. oh, don't get me wrong, my dear hubby understands but he sees it all - you know?

but people at work - take the other day for example. I was trying to explain to a new colleague about what the fibro fog is all about, how I get confused, easily distracted, unable to 'take in' what I read. and you know what he said? "oh, I get like that sometimes" :roll: :twisted:

it's like trying to explain fatigue, all you'll end up with is a reply along the lines of "everyone gets tired at times". totally missing the point.

so.. guess what I'm trying to say (in my usual roundabout way :mrgreen: ) is don't spend too much energy worrying what other people think or trying to explain it. it will just stress you out and we all know that stress make you feel worse.

just remember - you are the one with this illness. you are not faking it, making things up, being lazy, or any of that. you are doing your best with what can often be a devastating illness.

hold your head high and take the time to come to terms with your illness. once you're past that hurdle, things will seem better.

good luck xx :cat2:
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Mon Dec 15, 2014 9:57 pm

Hi dazzleship thanks for your message :-). This is just a quick reply to one of the things in your message, I will try & reply to other parts at a later stage, I just don't feel up to replying to it all at the moment. Just about the TENS machine, I have played around with it, different settings & using it on different parts of my body & I just find that I hate the feeling of it in general like it feels like pins & needles. It's just unpleasant & if that's the case then it's not helping me so maybe it's not the right treatment for me, what do you think? I'm seeing the lady who gave it to me on 2nd Jan so perhaps she'll be able to help or suggest an alternative treatment...
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby dazzleship » Tue Dec 16, 2014 1:57 pm

hiya

if that's the case then maybe it isn't right for you. sounds like you've given it a good try so if you really don't like the feel of it then yes it's probably best to stop using it. :-)
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Re: Hi I'm new on here and currently having really bad flare

Postby Mini » Tue Dec 16, 2014 5:46 pm

Hi, where did you see the pain specialist? I'm in essex too
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Tue Dec 16, 2014 10:01 pm

dazzleship wrote:hi Sarah

first of all :hugs: and welcome to the forum.

about work - I still work full time (and intend to stay that way :-D ) I think there is a valid point in people saying that you shouldn't be off work for too long. the reason being, the harder it will be for you to go back. you know?

I would suggest not giving up on the TENS machine yet - do you have one with different settings? I have one and I find that different settings help at different times. but I also know that it doesn't help with all of the different pains I have. I tend to use it for the 'crampy' sort of pains that I get in my legs, that make me feel like I don't know where to put them (if that makes sense). or for the shoulder pain too. so if yours has different settings you maybe need to try and adjust it a bit more until you find something that suits.

another thing I would say is don't waste too much time trying to explain to others about how the fibro really affects you. I've stressed myself out on many an occasion trying to find out how to explain to colleagues / bosses etc.

but you know what? I'm beginning to realise that it's a waste of time trying to explain. oh, don't get me wrong, my dear hubby understands but he sees it all - you know?

but people at work - take the other day for example. I was trying to explain to a new colleague about what the fibro fog is all about, how I get confused, easily distracted, unable to 'take in' what I read. and you know what he said? "oh, I get like that sometimes" :roll: :twisted:

it's like trying to explain fatigue, all you'll end up with is a reply along the lines of "everyone gets tired at times". totally missing the point.

so.. guess what I'm trying to say (in my usual roundabout way :mrgreen: ) is don't spend too much energy worrying what other people think or trying to explain it. it will just stress you out and we all know that stress make you feel worse.

just remember - you are the one with this illness. you are not faking it, making things up, being lazy, or any of that. you are doing your best with what can often be a devastating illness.

hold your head high and take the time to come to terms with your illness. once you're past that hurdle, things will seem better.

good luck xx :cat2:

Yeah I know what you mean with the reactions from people when I'm trying to explain my illness. Whenever I've tried to explain that I'm tired or in pain I've had it from pretty much everyone saying "well yeah I get tired too", "yeah I ache too".

So then it all becomes about them & they start talking about how tired they are or some pain they have somewhere in their body that they've had for the last 2 weeks & I'm just standing there like "er I thought this was supposed to be about me...".

But I guess we're all guilty of it, when someone starts complaining to me about an illness or pain or tiredness I probably say the same sort of thing! I think it's cos you're trying to find some common ground & if they say something that sounds familiar to you, your first reaction is "oh yeah I've got a similar thing..." trying to reassure them that they're not the only one when actually that's the last thing we need cos our illness is unique to us.

So yeah I think that's good advice so I'm gonna try & not waste too much energy on trying to explain my illness to work colleagues in future. When I go back I'll just say something along the lines of "I had a bad time with my illness, but I'm feeling much better now cos I'm on new medication" (well I'm hoping my specialist will put me on better medication anyway).

And if someone tries to get me to do something that I feel is too strenuous, cos I work in a shop where some tasks are strenuous, I'll just say I can't do it cos of my fibromyalgia, simples! I think I've been thinking that I need to explain it & justify it to make them understand why I can't do certain tasks but maybe I don't unless they insist I do it even after I've said I can't cos of fibromyalgia, in which case I'll go straight to HR cos they've got all my doctor's notes.

Do you think it would be a good idea to ask my specialist to write a letter that I can give to my HR department explaining my illness a bit so I don't have to explain it? And if any conflicts arise they can look at the letter.

I'm planning on going back to work in the new year by the way but I'll see how things pan out with seeing doctors, I have a few appointments coming up and seeing how I feel etc...

Yeah my boyfriend and parents are the ones who see me the most, so it's important that they understand it all. They have seen me at my worst recently, looking and feeling like a zombie! And probably at times acting like one, all crazy & writhing around in pain!
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Re: Hi I'm new on here and currently having really bad flare

Postby Sarah_89 » Tue Dec 16, 2014 10:05 pm

Mini wrote:Hi, where did you see the pain specialist? I'm in essex too

Hi Mini :wave: Orsett Hospital. Where in Essex are you?
I am a fibro fighter! :-)

Keep fighting guys and gals and stay strong! Gentle hugs

Sarah x
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Re: Hi I'm new on here and currently having really bad flare

Postby Mini » Tue Dec 16, 2014 10:51 pm

I'm not far from benfleet so southend was my nearest hospital, I went on a pain management course there and wondered if that's where you were going.

It's really hard to describe to other people who don't suffer from any of this exactly how you feel, it becomes very frustrating
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Re: Hi I'm new on here and currently having really bad flare

Postby dazzleship » Wed Dec 17, 2014 8:07 am

Sarah_89 wrote:Do you think it would be a good idea to ask my specialist to write a letter that I can give to my HR department explaining my illness a bit so I don't have to explain it? And if any conflicts arise they can look at the letter.

yes I think that's a good idea then the HR department have plenty of information about your illness which can only help.

and good luck going back to work in the new year :-)
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