Newly diagnosed: I have recently been... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Newly diagnosed

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I have recently been diagnosed with fibromyalgia, and although it is a relief to finally have an answer to my symptoms. I am struggling coming to terms with the fact I can't do what I use to. Is there any guide lines anyone has in helping to change my life style. I have always been active and was always helping other people ( telling me it is my turn to get help back will not help).

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skit profile image
skit

Hi Bertram and welcome to the greatest friendly forum for Fibro I have found. Ask anything you will get some answers! Fibro is like start again life. A suggestion for you do not look back look forward. There are good opportunities for you. I agree that when someone told you to get help back it is partially true. If in UK NHS has got some good Rheumis and therapists dedicating themselves to help us with Fibro. Sadly some refuse to do anything but tell us here are some medications now go away in some way.

Lifestyle changes require thought and motivation. I found a self help course for people living with chronic health conditions a great place to start. Your GP should know where there is a course in your area. I became a tutor for 5 years of that course where I live.

Always poke your head outside the door daily and see there is a world away from your home. Living with Fibro can become isolating. Check out our sister site fmauk.org to find out if there is a support group near you. My 1st group saved my sanity when I realised I was not the only one with the pains, lack of sleep etc etc. That is enough from me.

Gentle hugs

Ladybex profile image
Ladybex

Hi Bertram and welcome ...

I understand how you feel as I cannot do what I use to... but my advice would be to take each day as it comes and start an exercise programme ..

Skit has left a great message

Sending healing thoughts 😊

Keepstrong profile image
Keepstrong

Hi Bertram. 🤗🤗🤗🤗Firstly I am so sorry that you have this horrible condition. But I have to say you are already keeping on top of it and controlling it as you are here now asking for advice and that is the very start of keeping your own power and not giving it away to your FMS. 👏👏👏👏 Well done proud of you and you should be too. 🤗

As to being active you still can be just not as much as your use to, an this means you must take time for your new self to grieve for your old you, but also be excited in learning how to work with your new life style and just tweeching a few goals you had made in life to some new ones and working with what sets off flair ups like keeping a food diary, keep note of what foods you had thar makes you tired. How much activity you did an where sore after it so cut the timing down a notch. Ask your doctor to refer you to a FMS ( fibro myalgia syndrome) physio therapist but also a dietician as 90% of FMS people develop IBS /irattable bowl syndrome.

They be able to help you be on track with dietary to prevent flairs of FMS & IBS through diet.

All these things I wish I was told 20 years ago. I'm just delighted that all my research has paid off all these years an I can help people like your good self🤗🤗🤗. Please feel free to message me anytime here if you want to chat or for advice. 🙏 Sending you soft healing hugs with comfort and light dear friend 😇😇😇🤗🤗🙏🙏

Keepstrong profile image
Keepstrong

Sorry I forgot to give you the link on YouTube to help you stay active. 🤣🤣🤣

youtu.be/tLct1y6Qdok

Nk210678 profile image
Nk210678

Don't look back just move forward. Changing your lifestyle won't make it better despite what some people say. I was diagnosed in 2008 and was told if I did a b c it would be better.

sexto profile image
sexto

Hi. I was really active before I got diagnosed. It hit me very hard. I still try and do my normal activities especially walking I find that helps and just rest when I need to.

Hope you find this helpful.

LuluCops profile image
LuluCops

Hi, I when I was first diagnosed I still tried to keep up with going what I used to, I refused to give it up, I used to be so, so active, and it really hit me so hard to find that I really couldn’t do what I used, it used to wipe me out so bad afterwards. It took me a long time to realise that I was the one making myself sicker by carrying on doing what I was doing, and not accepting the help when it was offered to me.

That was 11 years ago, I still grieve for the old me now, I still struggle with not being able to do what I used to do, I’ve missed my youngest daughter growing up, she’s 10 this year and I’ve never been able to ‘play’ with her, like play football in the park, teach her gymnastics like I did my other two daughters when they were younger. That hit the both of us hard, but these past 2 years I am slowly learning to deal with my diagnosis, (I’ve had FM for at least 20 years) I wish I was offered counselling when I was diagnosed, or I’d gone to my GP and asked for help. I’d encourage you to do that sooner rather than later. And talk to people, those of us in the same boat here are more than happy to help you, this forum is brilliant for letting off steam and talking to.

Good luck to you lovely, we are always here if you need us

Shelley xx

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