Waiting for a diagnosis

[Nutty34]

hi I haven't actually had a diagnosis yet, I have been doing some research on fibromyalgia and pretty much all the symptoms are the same as mine. I am just looking for support. I have had stomach pains (ibs??) Since March last year, joint pain for most of my adult life. Thanks nutty

[Hazel_Angelstar Administrator FMA UK Staff]

hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

Has your gp done bloods, xrays etc to check if there is any other cause for your pain?

[Nutty34 in reply to Hazel_Angelstar]

Hi hazel I have had X-rays, MRIs CTs endoscopy and lots of blood tests and physio therapy 😀

[Hazel_Angelstar Administrator FMA UK Staff in reply to Nutty34]

and frustrating when everything they do comes back clear - because fibro does not show up on tests

Hope you can get some answers x

[Alltheflowers]

Hi Nutty,

On the up side, at least now you have had all the tests you know you don't have anything worse lurking about.

Have you spoke about fibro to your doc?

My doc did tests for years and then put it down to anxiety - until I finally spoke up and said I shouldn't be feeling like I did. Sometimes they need a polite nudge!

I wish you well with your diagnosis 💜

[Tjoceans]

I'm here in thr U.S. It's like wack-a-mole here. Ya, our healthare sucks. People who say it's great have not had good care and don't know the difference.

I was diagnosed with FM by an arthritis doctor for 20 dollars, which is illegal here, but he did it anyway. The only reliable test is pushing on the pressure points and whether those hurt enough. Some days are better than others, so it has to be bad when you see them. It just so happened that I was having a major flare up in which I have to pace for hours until I can get relief. I saw a guy once that was in the lobby and he was rubbing on his entire body like he had ants. He was so scared, he was begging what was wrong. I never found out, but complete misfires in the brain, I assume.

I also met a lady who had FM and her skin hurt so much she couldn't hug or have sex with her husband. He didn't believe in FM and just thought his wife was playing mind games. Who knows if they are still together. It's an unfair illness.

My phone is really messing up here.

You don't need a bunch of tests. You just need a doctor that believes the illness exists. So many doctors don't believe it exists and write us off as drug seeking. The tests will always come back fine.

In the states, docs were treating with tramadol, which is now a controlled substance, but they were passing it out like candy. I have an old bottle I keep around for really, really bad flare ups. I try not to rely on it, because I'm groggy the next day.

The docs blame us, thinking we are seeking drugs, when actually they created pill mills and made money from it. Over the last few years, docs have switched to presrcribing antidepresants, which is really bullshit, especially for someone diagnosed with manic-depression. It's a big no no. Then they try Gabapentin, it helped, but then I had such severe constipation. Tramadol can also make it a little worse, but sometimes that's all that works.

I really believe the bad docs want us on a drug they can continue to prescribe. Get everyone on an antidepressant. I've heard people say therapy helps. I think this telling us we are mentally ill is really bullshit. Also, they don't consider it a disease here anymore. They say its not inflammation. Its bullshit.

I can offer some suggestions though. Begin taking magnesium once in a while. Best thing I ever did. I take powder form. Also, going to FODMAP diet and going vegan has helped inflammation so much.

Ask for a doc that treats FM or maybe check online. You have to find someone to believe you.