Positive Time

[Tootiepie]

Hello everyone, especially our new members. I have experienced fibromyalgia since the age of 40. My first experience was directly post an operation.

At its worst I can do nothing.

First thing in the morning is always the worst for me, waking up and not being able to move any part of my body without severe pain. Not being able to walk down the stairs without holding on to the bannister with both hands and taking one very slow step at a time. Not being able to hold a kettle of water, sometimes a cup or mobile phone

Those days/weeks/months are marked by severe frustration as I used to be an extremely active - can’t sit and do nothing type of person. I get very low and depressed - thinking this is it, the rest of my life !!!

However, as the years have passed (I’m now 59), I began to realise that some days were better, even a lot better than others.

Through this web site I discovered the phrase ‘flare-ups’. This is when I realised that I was not alone in those darkest times. Those months, years of pain.

The reason for this post is to give hope.

There are times when I feel so much better, when if I manage my expectations, am kind to myself and do not try to push myself too hard that I can be relatively pain free (sometimes even ache/discomfort free).

There are also periods of time when I feel ‘cured’ - for some unknown reason I feel very well.

I understand that for some people this may not be the case. I am simply wanting to give hope and reassurance to new members of the group that your worst periods may/can be interspersed (for no known reason) with ‘better’ periods.

I genuinely hope that this is the case for many of you. I am thinking of you all, and a big thank you to the kind people of this group who helped me understand my ‘flare-ups’ better X

[Dizzytwo Moderator]

Great Post thank you for sharing it with us. I was around 25 with two small babes when I started been ill I'm now 64!!

I know the young and the newly diagnosed feel let down by a lot of our health care dealing with Fibro. They may think nothings happening to help them or find some sort of cure.

I would just like to say from my own personal experience over many years I've seen a lot of changes. Back in the day there was no medications no pain clinics no groups like this one and research. Doctors had never heard about it full stop.

Yes there are still many doubt how we suffer but compared to 30 +years ago it pails in comparison to how it once was. Fibro with out a PC or mobile so we can plug in and talk with others who suffer and understand. It doesn't bear thinking about. In my day you truly was alone, isolated and suffering. Thank goodness for technology I say 👍

But I would just like to say there is life after fibro. It's like living life at the moment with the pandemic. It's not what we are used to but it's our new normal. Fibro is like that for me I've learnt to adapt I don't like it and I'm now a wheel chair user too. But it's my new normal.

Adapting does not mean your giving in it means your learning to get the best out of your life.

I learnt early on trying to push through the pain and tiredness there was only going to be one winner.

I hope everyone finds what helps them. For me exceptance was my starting block to help me through the difficult days and nights and believe me there are many LOL Take heart there is life after fibro you just have to find out what works for you 🤗 🤗

Momo

[Tootiepie in reply to Dizzytwo]

You sound amazing !!!! Your positivity shines through. Your are absolutely right, we are all different but the same. Fibromyalgia has at last been accepted as a medical condition and not merely something in our heads !!! (can you believe it !) Some sufferers are worse than others (like yourself), some have mild symptoms, and some people like myself finds that the Fibro swings between being completely disabled and then not (can’t figure that out).

Having heart and acceptance of your situation - I know this can be devastating and extremely difficult to do - learning what you can about the illness, being part of a group, listening to your body and not putting too much pressure on yourself, trying different medicines (as not the same works for everyone), are all things that we can do to help ourselves. However I have found that having a group such as this, where I no longer felt alone has been a massive boost. I can’t thank everyone enough.

I wish you well and hope that you are managing your condition and this strange situation that we are all part of at the moment, with strong mental health and a positive outlook for the future.

[Dizzytwo Moderator in reply to Tootiepie]

Thank you, Your positivity also comes through loud and clear and it is great to read. But at the end of the day we are only human and believe me I do have my down days just like everyone else. Maybe it's just me but growing older and having the fibro /CFS for so long learning what works for me or for anyone imo come easier to deal with has we become more experienced with the illness.

In the early years OMG I must have had an ambulance out side my door more times than they were at the hostpital lol Every ache,pain and twinge I honestly thought I was dying or having an heart attack . It brought an whole new meaning to listening to your body that's for sure. I guess we can listen too it too closely lol But now all these years later. I still get the same problems and more. But I do now realise we can over analyse and that's not always a good thing. I guess it's too easy to reach out to DR Google sometimes LOL . Yes it's good to get the knowledge but sometimes I think we can fall in to a place where we look for something to fit how may feel and then we can end up living in a bubble of constant fear if we are not careful. That's how it was for me for a long time.

But hey I am still here to tell the tale the kids survived even if my first marriage did not. But take heart I have been married now to second hubby for 30 yrs and we met when I was going through some of the worst times both personally and medically . That's why I say there is a life after fibro it's just how you learn to deal with what's in front of you.

I know it's hard and I am just speaking from personal experience and have total understanding and empathy for everyone who has to deal with fibro/CFS or any other long term chronic illness xx

[Dizzytwo Moderator]

Couldn't agree more MD and I honestly think like you say if only others could look at us with different eyes and understand what we go through even when we look the picture of health some days. I do believe it would help many who suffer cope better and learn to accept faster. Mindset is everything for me even on my bad days and boy do have them . But I know they will pass. I know Fibro won't kill me even if the frustration at times might LOL

Talking is a good thing for me. even on my down days I feel it's good to share. Keeping how we feel bottled up does nothing but harm IMO . xx

[Hidden]

Isn't that the truth! I wake up on a good day and push my luck everytime. Next day, can't do anything at, even get out of bed sometimes. I'm still new ish and learning my limits xx

[Tootiepie in reply to Hidden]

I think it takes time to find out your own ‘pattern” of what you can and should not do. A good day feels so Amazing that it’s only human nature to want to catch up on things that have been left undone. It’s all about pacing yourself and recognising not to push your body too hard. I have also noticed a strong link to my moods. Emotional upset of any kind can make my physical self deteriorate. I hope that you don’t find this link. Take care and be kind to yourself.

[Hidden in reply to Tootiepie]

Sadly I too find any emotional stress has a huge impact on me physically! Xx