To feel devastated at potential diagnosis?

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Hi all,

I've been suffering with some widespread pain for about a month or two. I woke up one morning completely exhausted and aching everywhere and thought I was getting the flu but the pain and exhaustion never actually went away. It was mostly manageable with some days/activities being worse than others but nothing too bad.

During this time I've also suffered with migraines, Toliet issues etc but didn't really know what was going on and just thought I was unwell.

My pain today was a 10/10 and it was everywhere, I could barely walk and I was exhausted (I fell asleep in the taxi) I messaged the doctors for the first time about it today as it was so bad (I nearly went to hospital because i genuinely thought something was really wrong but thought what could they really do)

The doctor gave me an appointment for half an hour later and examined me, he said they were going to do some bloodtests to rule out anything metobolical (I think he said) but suspects it may be fibromyalgia and that's terrified me.

My friend has it and she needs a stick and a wheelchair, I have two young children and were going to go back to college to train to be a hairdresser and I feel like everything's sort of been taken away from me like how am I going to cope with two young babies and have fibromyalgia.

I know I'm jumping the gun a bit but I don't know what else it could be, all the symptoms seems to be fitting.

Please can I have some positive stories from others who's been diagnosed with it, I just need some good news today I think.

Ah! Be kind. Well I will continue to give my view as I think best and not be silenced by this sort of nonsense.
I said nothing rude or unsupportive.
And you stated "cancer can be cured" without any further clarification.
Ignoring you in future and apologies OP that your thread was derailed by a disagreement although my original post still applies.

You haven’t yet been diagnosed either. You’re still putting the cart before the horse. It could still be a virus. Could be Covid, post-Covid syndrome, flu, or several things. Even stress. These are the low end of the spectrum things. I’m not going to blow you up with the really bad things that these things could possibly be because there are literally millions of things. I think you just have to try and relax (trust me, I know it’s not easy… I’m on the heart transplant list.) and sit it out until you have a definitive answer. Dr Google and your imagination (plus well-meaning strangers on the internet) can be very dangerous for your health.

I have it. I take Lyrica. Gabapentin is another option, as is amitriptyline. Yoga also helps. Try long, hot baths with Epsom salts and massages. A TENS unit is also helpful.
Most people with fibro live relatively normal lives. You need to find the strategies that work for you.

I'm sorry that you have cancer, but it's really shitty to come on a thread where someone is struggling and say that. Cancer doesn't give you the right to dismiss others suffering.

So sorry to hear this, and of course it's frightening - but try not to worry prematurely.

Then, forgive me, but this seems like another example of something that shouldn't be in AIBU. Would it be better in the health forum? Or even a specialized forum? There are a few, including this one:

https://www.fibromyalgiaforums.org/community/

You can ignore me all you wish, it won’t stop me telling you that your post was shitty and mean.

I thought I'd update this thread.

I was diagnosed with fibromyalgia today at the GPs but wanted to thank everyone on this thread, I appreciate it's not life threatening but the pain sometimes does leave me bed bound and unable to do much but I'm going to take it one day at a time, look at all the pain management techniques and do my best for my children.

Sending love to people on this thread who's suffering from fibromyalgia, cancer or any other illness.

That was a very quick diagnosis and unusual to get diagnosed by a GP

Have you had input from the hospital? Blood tests and xrays and scans ?

Fibro is normally diagnosed when EVERYTHING else has been ruled OUT

Yes I was going to say this. There are no diagnostic tests for it, it's a diagnosis of exclusion - i.e. the diagnosis they give when they've ruled out everything else.

I am very surprised that a GP thinks it's appropriate to make this diagnosis, least of all a mere week and a half after the patient first presented. That seems extremely inappropriate at best.

Have you had any scans of any kind?

Where I live, the Rheumatologists won’t see patients for whom a fibromyalgia diagnosis is suspected. It all stays with the GP

Exactly- doesn't fibro normally have to be properly diagnosed by a Rheumatologist or has it got to the point where so many people have it that Gp's are now diagnosing it?

I don’t think it was. I think it was (rightly) giving OP a sense of proportion. If somebody offered you fibromyalgia or lung cancer, which would you take? Of course no diagnosis is a ‘good’ one but really on the spectrum of things this isn’t the worst by a long way. I have an autoimmune condition which is a total pain but I can objectively see is nowhere near as daunting as a huge array of extremely serious conditions. It helps to remember that rather than go down the ‘why me’ route which is a road to nowhere.

I think the GIRFT guidelines have meant that fibro is now with the GP to diagnose and manage
gettingitrightfirsttime.co.uk/wp-content/uploads/2021/08/Rheumatology-Jul21h-NEW.pdf

I got fobbed off with fibromyalgia at one point by a lazy doctor. I don't have fibromyalgia I have an uncommon autoimmune disease that can't be detected with the blood tests available to a GP.

There's no way a GP can safely and competently exclude all other possibilities in 10 days with a few standard blood tests. That's not even trying to establish what's wrong with someone. If that's what's happening to people then it's an abomination.

I got told I had fibromyalgia.

I didn't, I had ehlers Danlos syndrome, POTS and MCAS and because they misdiagnosed me for years it damaged my body beyond repair.

Fibromyalgia is just a cop out when they don't know what's wrong with you.

Firstly I think the GP is totally jumping the gun with this. There definitely needs to be more investigations and a referral before reaching this conclusion. What tests have you had done? Vit d, thyroid? Lyme disease?

Even with negative tests it could be some sort of post viral or ME? My brother was diagnosed with ME years ago and was exhausted for around six months and then made a full recovery. A friend’s son had some sort of post viral fatigue and as a teen spent a year not attending school and mainly in bed but has now fully recovered.

Dd was given a diagnosis of fibromyalgia years ago by a rheumatologist and to be honest Im not sure it’s a correct diagnosis because he also diagnosed her with EDS on the same day and EDS causes pain and fatigue so I don’t see why he also diagnosed her with fibro. It’s often thought of a diagnosis where all other possibilities have been ruled out. The main reason it’s a shit diagnosis is because any medical person will write you off (ime) without proper investigation for any future issues once they hear you have fibromyalgia, got a bad knee…..no point having an orthopedic referral or a scan, it’s just your fibromyalgia. 🤷‍♀️

i certainly wouldn’t be accepting a diagnosis after pain of a couple of months. Another friend is currently fighting to get her fibromyalgia diagnosis taken off her notes because she also disagrees with it and is now finding the label is causing problems.

Exactly the same for Dd. EDS, pots and MCAS
exactly the same for my friend trying to get her fibromyalgia diagnosis removed, she also has a pots, eds and MCAS diagnosis.

i have an eds and MCAS diagnosis and yes I have chronic pain and tiredness but I am glad I know why and can try my best to take steps to reduce symptoms

At least the fibro diagnosis isn’t revealing anything new and concerning. You already knew you are living with widespread chronic pain so the diagnosis basically only restates that.

I'd be sceptical about accepting a fibro diagnosis already tbh. There is no test for it and the symptoms can literally be hundreds of other diagnoses.. It's usually once lots of other things have been ruled out.

It's made up nonsense with no actual evidence. I've been diagnosed it after spending 9 years getting almost wvery test you can think up. This is what they've cine back and told me I have and prescribed me medication. I've no wheel chair or walking stick and live a relatively normal life. They'll give toy pain relief for your nerves and you'll see a pain management specialist. That's all.

I have no idea why people keep posting this is an inappropriate diagnosis that they’d be ‘skeptical’ about. The OP has not yet been diagnosed with anything.

Poor comprehension skills are a real problem.

Fibromyalgia isn't often diagnosed after 2 short months of a few symptoms.
I've got Fibro and it CAN be absolutely debilitating for me, not helped by being polyarthritic.
It can be hell to live with, but I manage to do pretty well solo parenting ND 6 year old twins.
I think it helps that I'm stubborn as fuck and push through the pain. I refuse to take opiate medication, so I have to grit my teeth.
As it's an 'invisible illness', most people have little clue about how much I struggle.

At 18:52 today, from OP.

I thought I'd update this thread.

I was diagnosed with fibromyalgia today at the GPs

you may want to work on that comprehension.

Apart from where the op says she's been diagnosed with it poor comprehension indeed.