Trying to accept diagnosis and learn how to pace!

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New member
Feb 28, 2023
Hi all I am new here, was diagnosed officially November 2022 by rheumatologist at hospital kept going back and for to doctors as didn’t know what was going on multiple doctors told me they thought I had fibromyalgia but nothing could really be done until I have a formal diagnosis which I could only get from hospital so I waited probably about 2/3 years for so was very patient. I was told doors would then open for me but I don’t feel they have i have medication and a diagnosis that’s all no help on how to manage day to day.
I felt a mixture of emotions after having the diagnosis I was relieved as I finally knew what was happening and going on but also devastated as I was I think hoping that it wasn’t fibromyalgia and it was just something that was going to pass kidding myself a bit I guess really. I would say I am struggling to accept my diagnosis I also suffer with my mental health and have a ot to help with this one thing that I’ve always done to help with my mental health is clean clean clean and keep busy and obviously there are times now where this is not possible and I’m really struggling with that I like things clean tidy and in their place I always like to be doing something even if it’s just around the house I am a bit of a perfectionist and can be quite hard on myself really, I’m struggling to keep this level of cleanliness up and it is effecting me mentally too as I feel angry and frustrated with myself that i can’t do as much as I could previously. i have been looking up and seen pacing techniques and spoons. I dont find there is much help online as such so I came across this site a few weeks back and today plucked up the courage to make an account in the hope that someone may be able to relate, and offer some advice and tips.
sorry about the long post. Thanks for reading
Hello @Carra44 and welcome to the forum.

You can find a lot of support here as well as answers to questions you may have.

personally, I don't like the so called "spoons" thing because it's so inaccurate and silly. I think of having fibromyalgia, and describe it, as a faulty battery that can't take a full charge any more and so it runs down earlier than we want it to and takes longer to charge up. But whatever analogy works for you is fine.

I understand about not being able to do the things that used to keep your spirits up, as I am experiencing the same thing. There are, however, things you can do for yourself that may help and I wrote a post about this that I encourage you to read for advice and tips. Others here will be able to share other things. This forum is probably the most helpful thing you will find online.

You are not alone, and all of us here are here to help each other. Stick around, because you can learn a lot and always find an "ear" to listen to your problems, challenges, and successes. Ask any questions (nothing is a silly question) or just vent, whatever helps you, and someone will respond.

Hello @Carra44 - and welcome to the forum.

A lot of us can relate to your story, but many have waited years (avg 5-7 yrs) to get that diagnosis. And while it can be a bit of a relief to finally know what the heck is going on, it really does not help us all that much, medically, other than having something to put down on various forms.

All of that said, however, there are things you can try out to help yourself. There is no single treatment that helps everyone, so it is often a learning process to find what works for you.
One key factor in coping with this is learning to forgive yourself when you are not able to do everything you think you should be able to.
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