hello :)

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hello :)

Postby SilverLainey » Thu Aug 22, 2013 10:09 pm

Hello!
My name is Elaine and I have Fibromyalgia (wish it was an addiction I could give up!). I was diagnosed in February but had the pain/ache symptoms for about 2 years and the fatigue for as long as I can remember.

I'm on Pregabalin and have just increased my dose to 500mg as it isn't working as much as I'd like. Well some times it seems to, like a couple of weeks ago I felt better cos I was sleeping better but since last week when I felt awful, with not just the aches and pains and fatigue, but with headaches that seemed border on migraines, no energy, exhaustion, nausea as well as my IBS playing up. I'm only just feeling like I'm recovering from this which I guess is a flare.

I know I'm lucky that I do have Fibro mildly in comparison to many and work part time whilst being a mum to two boys aged 11 & 7 but I find I'm exhausted once I've come home from work and collected the boys from school that my hubby has to cook the evening meal for us. This has caused a good number of rows as he didn't get that I was that tired or my legs hurt that much that I couldn't wash up a few pots. Now I have a diagnosis he still doesn't really get it and he's not the easiest person to talk to about these sort of things. :roll:

Well after rambling on :sleep: my real question is, does Fibro progressively get worse? Do you get it and once you've hit your level it stay the same or similar level of pain? When I started with the pain, it started in just my right ankle and knee and slowly spread to most joints of my body, though it's usually my knees and ankles that bother me. But is that it, will I be like this now forever barring the odd flare? Or will I keep getting worse, needing more pills and having to give up work etc?
Cheers
Elaine
Last edited by FluppyPuffy on Fri Aug 23, 2013 11:03 am, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: hello :)

Postby denys » Thu Aug 22, 2013 10:17 pm

Hi Elaine and :welcome: to the forum :cow-wave: :cow-wave: :cow-wave: :cow-wave: in answer to your question, no one really knows :shock: :shock: :shock: most of us have got worse over time but if you learn to pace and listen to your body hopefully you will cut down the number of flares you may have.

As for your hubby try printing off 'one for the non believers' and ask him to read it, Shaz really nails how it is to live with this condition :-D :-D
Denys

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Re: hello :)

Postby FluppyPuffy » Fri Aug 23, 2013 11:15 am

:welcome: to our little escape from it all Elaine :cow-wave: :cow-wave: :cow-wave:

Your question about whether FM is progressive or not is one that is often asked on here, and it is one of the most difficult ones to answer as, rather than following a general pathway which would give you an idea of what to expect along the way, FM tends to decide where it is going whenever and wherever it feels like it, which is part of what makes it such a frustrating condition to live with :facepalm: :facepalm: :facepalm: :facepalm: :facepalm:

For most of us, it seems that our symptoms and problems have intensified along the way, but there are others who have found that they have stayed pretty much the same since they were dx'd :-? :-? :-? :-? As Denys has said tho, if you can learn to listen to what your body is saying to you, and find ways to help you work with your capabilites and limits that FM has given you, it can all help with managing your condition. Also, there are number of meds and treatments that can be tried, all of which may help in your overall approach.

The topic that Denys has suggested is really good at explaining what it can be like to live with FM, so if you can, get hubby to have a read. Hopefully it will help make things a tad clearer for him, which will then find its way into making a few heated discussions a tad cooler than they might have been for you all :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:
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Re: hello :)

Postby SilverLainey » Wed Aug 28, 2013 1:51 pm

Thanks for the welcome!

I have saved the 'non believer' thread to show my OH, just need to pick my moment. He's being having trouble with his family and so there is a lot of stress flying around at the moment, which I don't think has helped me and my symptoms. However I'm not even sure he read the leaflet that I got from the hospital on Fibro whereas my parents took it home and both read it cover to cover :-o

I'm not really 'getting' pacing. I just don't see how I can pace myself when there is so much going on with my boys and family life in general! If anyone has any tips, I would be grateful!

Elaine
x
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Re: hello :)

Postby csangel » Wed Aug 28, 2013 4:40 pm

Hi :wave:

I was diagnosed in January, and it's taken me a while to get a handle on things... I'm feeling far better now than I was when I was diagnosed - was going through a flare at the time that ended lasting about 6 months in total :yikes:

If you're anything like me it was all a bit of a whirlwind to start with, and took a bit to get used to the idea. I've found the pacing a struggle but am getting used to things a bit more now. It helps to try and go day to day, not thinking too much about how I'll be in a few months, or if I'll be worse, but just try and take things as they come. I did a lot of research on here, and a lot of crying, but I'm feeling more settled now. :crazy:

WRT the OH, It's taken until now ish for me to feel like I'm getting anywhere with things. At the beginning I thought he didn't love me anymore and didn't understand, now I realise he was trying to help by not talking to me about things he thought would stress me out and he took a lot of rubbish from me when I was really bad :oops: :oops:

It takes a while to work out the communication. I thought it was really obvious how much pain I was in because I could feel it, but he didn't know how bad I was until I told him. So we set up a little system of him asking me how I am... simple really but it really works! Also had a frank discussion about him closing off to me, etc. and how I struggle to cope with washing up - my hands are particularly bad and I keep breaking things :roll: :roll: so now he tries to keep on top of it more, and I do what I can.

Sorry - didn't mean to go off on a ramble. Hope it helps to see you're not in this alone, it may feel like it's all despair and worrying, but you will get on top of things.

Pacing wise - I now try and do one thing when I get in from work, generally the worse thing that needs doing, and then I feel good about myself for achieving that. Over time you can adjust what you can can't do dependant on how your feeling, but try not to push things too far now. Another thing I recently discovered - don't compare yourself to other people/how you used to be. It sounds harsh, but you can't physically manage that, so little achievements are big ones now. You've probably done a lot for your family until now, now it's time for them to pay you back. Get the kids helping out with a couple of chores. I got my OH to make sure he takes his plate, etc. back in the kitchen once finished - it made such a difference to me but he didn't realise it would. Talk to them and explain in detail how things affect you and what might help...

Good luck! :-D
Health is not valued until sickness comes. ~Thomas Fuller
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Re: hello :)

Postby csangel » Wed Aug 28, 2013 4:43 pm

Sorry - didn't mean to come across as having a go or anything! :oops: :oops:

Didn't realise how long that post was... :shock: Just wanted to give another view on things and hopefully you will be able to get a handle on things over time... I'm still learning and have a long way to go!

:grouphug: :grouphug:
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Re: hello :)

Postby denys » Wed Aug 28, 2013 11:59 pm

Didnt come across like that at all csangel, just a nice post giving some support :-D :-D :-D :-D
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Re: hello :)

Postby SilverLainey » Thu Aug 29, 2013 1:56 pm

Thanks csangel, it didn't come across like that at all. It was good to hear that someone had been there and done that! :-)

I guess it's just all a lot to take in especially when you're foggy! I had suspected that I had either Fibro or CFS/ME for a while before going to the doctors so it wasn't a surprise when I was diagnosed. But since then, because the diagnosis didn't rock my world so to speak, I've just trundled on as usual but I guess I've not really spoken about it openly, just experiencing it everyday!

With regard to pacing, I do 'fit in' jobs (housework etc) when I feel better but it's the everyday tasks such as cooking and washing up which have gradually become my hubby's responsbility that he sometimes resents and rebels again by having a go. I do always do the laundry no matter how I'm feeling partly because otherwise I might not do anything at all! All my OH sees me doing is reading, watching TV, playing Candy Crush, doing a bit of crafting or sleeping!

Sometimes I feel that my 11 (nearly 12) year old sees that I'm in pain/under the weather more than my hubby does :-? Will see if I can broach the subject over the weekend.

Thanks for the support!
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