Hello

[Jwhit44]

Hi Everyone.

I'm a newbie here - Please be gentle with me 🙂.

My name is Janet, Jan to my friends.

I am engaged to a wonderful man called George, whom like me has several physical and mental health issues.

I was born with Spina Bifida and Hydrocephalus, but I do have lots of other problems, most recently I was diagnosed with Fibromyalgia in June of this year.

My main problems with it appear to be breathlessness and fatigue, can anyone advise me on the best ways to cope with this on top of everything else?

Thanks.

Take care.

Jan xx

[BlueMermaid3]

Hi Jan

Welcome to the forum You will very soon find out that absolutely everyone will be more than gentle with you.

If you would like any help with navigating the forum and finding your way around just give me a shout and I will be more than happy to help you.

As you are newly diagnosed you will find our mother site very useful. It's full of good information fmauk.org

I am so sorry to hear that you have got so much going on for you. Sadly it does seem that Fibro quite likes to bring a few friends with it and a lot of us suffer with other chronic conditions too.

As to your breathlessness I am guessing you are not asthmatic and don't need an inhaler?

The other thought is have you started any new medications recently? It could be a side effect of those.

The main thing that most of us try (and mostly fail) to do is to pace ourselves. Are you ok with using the internet? If so try Googling the Spoon Theory. You can also type it into the search bar at the top right of your screen.

It is very tempting on our better days to do too much. We then end up paying for it for the next day or so.

Since I have joined the forum I have made some truly wonderful lifelong friends and I am sure you will too.

Don't forget that if you need any help I am more than happy to assist

Wishing you less pain and more peace

Lu x

Administrator

[mysmugcat]

Hello. I will think about your post.

[mysmugcat in reply to mysmugcat]

PS love the tiger pic.

I am taking 1000 mg evening primrose oil a day which seems to help my fatigue.

Always check with the doctor!!

[peck]

Hi and welcome. I think you will find all here are friendly and kind!! Hope you like the forum as much as I did and still do .Wish you and your fiance the very best.Peck 🐤

[albinohedgehog]

Welcome! I joined a week or two a go and this forum is full of lovely people!

I find fatigue possibly the hardest symptom to deal with. The only thing I've found that reliably increases my energy is stress reduction. If I make the effort and do reiki or meditation, then the next day I do have slightly more energy. I read once that with fibro and cfs 'The quality of your rest defines the quality of your activity' and I find this to be true.

As Lu has said aswell, it really helps to know about the 'spoon theory' of energy management. I think it's hard to avoid gentle peaks and troughs of energy, but if you stick to your spoon allowance mostly, you will be able to stabilise your energy levels more or less.

I hope thats helpful, Wishing you and George all the best xxx

[TheAuthor]

Hi Jwhit44

I sincerely hope that you are feeling a swell as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I really love your tiger photo it is amazing!

I think that Lu BlueMermaid3 has given you a wonderful reply with loads of suggestions to keep you going? I was also wondering if you have any inhalers of any kind for your breathing? I have COPD and use quite a few as well as having my own nebuliser machine. I find these help open my airways and I can breath a lot easier.

Also as Lu has already said that pacing yourself is quite important (where you can) as this can help cut down on pain and fatigue in a lot of cases. 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