Recent diagnosis

[Joker21]

Hi all new to this I'm 30 recently been diagnosed with fibromyalgia but unsure as to how I should feel. My emotions are all over the place all I want to do is cry and lay in bed alone. Not sure the ins and outs about this condition but would like to learn as j go along.

[koala84]

Hi. Welcome to the group. Mixed feelings are normal. I want to cry and curl up in a ball most days but have a five year old to run around after. There will be a lot of adjustments ahead. We have all had to change our lifestyles and accept that some things just are not possible anymore. Fibromyalgia is tiring and painful, but this group is here to see you through. I have found people to be very supportive here. The main thing is to take care of yourself. Over doing things will only make symptoms worse. Learning to pace yourself is the key.

[dippystuff]

Everyone responds differently when they get the diagnosis. Personally, I was relieved that what I was suffering from was finally 'named', because it had literally turned my life upside down within 2 years from my first 'symptoms' appearing, but I felt like a fraud whenever I went to see the GP because all the tests would come back OK.

I've found it best to just take my 'problems' one at a time. So when work was by biggest 'problem', I changed things by telling my boss about my problems and got referred to Occupational Health. Eventually I ended up moving jobs within the same employer several times, but I've ended up in a lovely role, which I can do mostly seated, and which I could see myself doing until I retire.

When household chores were my biggest issue, I got the kids to do more for themselves and my lovely H picked up more chores until we had a more sustainable balance.

Stairs and home mobility then became my biggest issue, so I asked my GP to refer me to Occupational Therapy, who came and assessed me, and provided tools to help me e.g a shower seat, handrail at my front door steps, a walking stick, a bed rail, a wheelchair and a perching stool etc all of which I use as and when I need to.

However you decide to 'move forward', just make sure you pace yourself, every day, because when you try to do too much and 'push through' the pain, you'll end up worse off.

Keep in touch with your GP, and ask them for what you need e.g referral to a pain clinic or better pain relief medication etc and try whatever you feel may help you e.g yoga, swimming, acupuncture etc.

Any questions or worries you have will be safe to post on here, so keep posting and reading others posts, because they are full of great ideas and good advice.

[Midori]

Hi Joker and Welcome,

It can be both relief to have a diagnosis, and despair because it is a condition not recognised by a lot of GPs or dismissed as 'All in the mind'.

Many doctors will just put us on antidepressants and leave it up to ourselves to do research on it. Personally, I find that depression is not my normal problem as such, but the pain and lack of mobility can make me depressed, when it is severe.

I am lucky in that as I have grown older, I have become accustomed to working with my pain, and can dismiss much of it, but the stiffness is the kicker. I can also recognise my 'real' pain, (knees and back mainly) from the muscle pain and the 'touch' pain, where someone knocks you and you can feel it for hours! For me it seems to be Musculo-skeletal mainly.

I'm going to suggest that you don't overdo the housework. People come to see you, the house is peripheral and housework is very patient! Work for 10 -15 minutes max, then take a short break and rest before starting again. This works for me, especially if I do something different each time.

I'm also going to suggest that you look up The Spoon Theory on the Web and get it printed off if you can, It shows how your energy drains during the day, and can be useful to show others why you can't always go out in the evenings. It is possible to 'borrow' energy from the next day, but don't make it a habit, as it is rather like your bank account, go overdrawn and it gets expensive! You can end up in a flareup if you overdo it.

I hope this will be some use to you,

Cheers, Midori

[Purplebluebell]

Hi, I felt the same for a long long time but in the end chose to just make the best of it even though it can be so painful. I allow myself a bit of a duvet day if really feeling under with it all. Try to pace yourself so you get positive feedback from what you do manage to do despite the condition.It takes ages to learn what makes Fibromyalgia better or worse and to accept what is wrong with you. I actually valued being told what was wrong so I could move forward rather than not know.

Everyone here will be identifying with what you have told us.

I was diagnosed in my 30's and am now in my 60's and apart from the aging process I'm a lot better that I was at the start.

All the best.

[Bigrockcandymountain]

Hi , I was told I had fibromyalgia a few years ago.I knew nothing about it. I’ve learnt myself just to keep moving keep active exercise to your capability keeps my mind busy and boosts my happiness as well as getting fit .I know everyone has different Ailments. I worked out very early if I sit around even watching telly for a day my body becomes stiff and painful all over .so if your able to be active either just walk regularly or find a low impact work out on u tube . Listen to your body though don’t over do it either .hope this helps