Just diagnosed

[Matt88]

I had a phone consolation with my GP this morning, she has been amazing and so helpful over the last few months. I’d had all the blood tests done before COVID which ruled out various conditions and although there was nothing in my bloods to suggest rheumatoid arthritis there is a family history of it so she ordered some X-rays last week to completely rule it out. She confirmed that there is no sign of inflammatory or rheumatoid arthritis so based on my symptoms and her physical examination she’s confirmed a diagnosis of fibromyalgia. I’m so happy to just be able to put a name to it at last and to now be able to focus on treatment and not more testing.

[M0AL61 Moderator Volunteer]

Hi Matt, and a very warm welcome to the forum.

[Midori]

Welcome to the club nobody wants to join! It's a bit like Hotel California!

It's a long journey, you will need to research to help your GP help you.

Have a look at The Spoon Theory, It gives a rough idea where the energy goes.

Take any task and break it down into smaller, more manageable bits. This is how I do things now, a bit of one thing, rest, a bit of something else, rest, then back to the first thing. Constant repetition of the same thing is not good, as it exhausts us quicker, and you will find the micro rests help.

Some of us Fibromites have digestive issues; I have a gluten problem, for instance. Others can be intolerant of milk products, etc.

It is important to keep moving as much as you can; some of us are lucky enough and fit enough to run half- marathons, and others are in wheelchairs. Fibro is a bit of a lottery, but we need to fight it each day, or it will take more and more from us. If your GP refers you to Physio, they might have more ideas as to exercise for you.

Tai Chi or Yoga is good for those who are of limited mobility.

There are a lot of Snake Oil therapies around, so be vigilant, if it costs a lot it may be a scam. We have come across a lot and can advise, before you part with your money.

Cheers, Midori

[Matt88 in reply to Midori]

Thanks Midori,

Someone I know did mention the spoon theory and it really clicked with me. I am finding at the moment that lack of energy and fatigue is harder to deal with than pain for me. For a few years now, long before any pain or fatigue symptoms, I've had a self diagnosed intolerance to dairy and I include only a very limited amount in my diet. I find I can tolerate fat free yogurts, fat free cottage cheese & Quark and not have any stomach symptoms but I am going to try cutting those out too for a couple of weeks and seeing if it makes any difference to my energy and fatigue.

I know there's no quick fix and it's all trial and error to a certain extent. I'm very lucky that my GP has been brilliant, I know some people find that some doctors don't like patients who turn up having researched and suggesting a condition or treatment but she's always listened and never dismissed anything I've said.

I've found a few yoga and pilates videos on YouTube that are aimed at people with fibro and if I get on with them I'll consider joining a class when they reopen.

[Midori in reply to Matt88]

Yes, It's the fatigue which does for me too; the pain is relatively minor in comparison.

Cheers, Midori

[Matt88]

I’m trying to keep up with running, my GP is keen for me to keep running too. I haven’t been able to for a few weeks now because of the fatigue and also I was worried that of it was RA that I could be doing damage to my joints, now I know I don’t have any form of arthritis that’s not so much a concern. I’m hoping when this flare is over I can get back to running and join a gym. I find running really helps with mental health and I can put up with the aches afterwards because it feels like a real achievement whenever I finish a run but at the moment the fatigue is stopping me. I’m slowly getting used to what I can and can’t do and I just need to plan my days around my energy levels at the moment.

[Jasharper]

Not quite sure but my doc said they could not diagnose fibromyalgia you have to see a rheumatologist to sign you off as having Fibromyalgia.

But check with others.