To feel devastated at potential diagnosis?

[TaylorsVersion1]

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.

Fibromylagia is not the worst condition in the world by a long chalk. It is variable and there is no reason to think it will be very disabling. Cross one bridge at a time.
I actually opened your thread thinking you were terrified you might have cancer (like me) or mnd. I would swap to fibromyalgia like a shot given the choice.
It is all relative.

I know friends diagnosed with fibromyalgia. They are fine - you wouldn't know they had any issues. It is a bit of a "dustbin diagnosis", and can be quite controversial, but it is very manageable. Definitely no need to over-react.

Oh love, that’s shit.

I have fibro (and M.E amongst other things) and it isn’t the most fun- but you do learn to live with it, and nearly everyone has periods where they feel better and have less pain.

Making sure you get a medication regime that works for you is a big thing, and also if you have a partner make sure they are really well educated and understand what this means for you- the more support you have the better.

Take it easy on yourself.

Agreed.

Thank you both.

I'm sorry you've been diagnosed with cancer and I apologise for making my thread sound worse than it is. I honestly meant no offence to anyone.

My immediate thought was my friend who needs a stick and sometimes a wheelchair and I just panicked that I wouldn't be able to play with my children properly or do nice things with them (which I know is nothing compared to having something terminal) and thinking I might not be able to pursue a career in hairdressing. I just got upset probably because of the pain and not feeling well as it is.

Thank you for bringing me back to planet earth. I can only take it one step at a time and some days are absolutely more manageable than others and on tough days I'll just have to take it easy - that's all I can do really.

I have fibromyalgia and currently having cancer treatment and this kind of ‘oh well it could be worse’ is really shitty.
cancer can be treated, it can be cured, no one calls you a liar, people are understanding when you can’t do things or need time off work. None of those apply to fibro and people are actively mean and shitty about it.
Im genuinely flabbergasted how much more people care about my cancer than they ever have about my fibro. So whilst cancer can be worse, Illness top trumps isn’t a good look. OP has every right to be worried.

@TaylorsVersion1 try not to get ahead if yourself, GPs aren’t actually able to diagnose fibro, you need a specialist to do that. Make sure you eat as well as you can, take vitamins and take care of yourself.

This is very ignorant and ableist.

Fibromyalgia is a variable condition, but is life altering for most. That's not to say therapy can't help a lot.

But you are minimising it, which those with fibromyalgia have had to battle against for decades.

Please stop.

Well it could be worse but it absolutely affects the quality of your life and your choices going forward. Deep breath and take one day at a time. Your symptoms sound scary and of course anyone would be devastated. But it has not been confirmed and the diagnosis can take a while. You can find the inner strength, and your kids will just be happy to have you around.

If you get to a point where you are in pain when you do most things and/or lose mobility, then please don't try to struggle on to avoid "a stick and a wheelchair" - both of them will free you rather than hindering. A mobility scooter is also a good choice if you can cope in your home but don't have the stamina to go out - you can still take toddlers to a park on a scooter (and on days out by yourself if you have one that collapses and you can get into a car boot in pieces) and push a swing from sitting on the ground!

It CAN be manageable. For some people. Not all. And I’m sure your friends with fibro definitely know they have it. 😒

They really need to exclude other conditions before they decide it's fibromyalgia.

Which they are doing - my doctor was really good but I guess him saying he suspects fibromyalgia along with a lot of my symptoms matching has put me in a bit of a tizzy.

I do suffer with CPTSD and cyclothymia so even though it probably seems like I'm over reacting and being a bit dramatic I don't mean to be, I'm just a worrier which is why I've posted for a bit of support.

This.

I have fibromyalgia, it's not constant and debts to flare up with stress. I have a pretty chilled life now so no big deal

I know how you feel. @TaylorsVersion1
I had to wait for cancer tests and I googled everything I could, always lighting on the worsr case scenario. I made myself so ill with worry, I could barely function.
It turned out that I had pre-cancer cells , I was given treatment and although I still have to have another check in a few months, the actual result was nowhere near as bad as I imagined,
So, I know how easy it is to jump to the worst conclusion if you have a certain mind set but it really does not help you, If I could have those weeks back, weeks that I wasted wallowing in misery when I had no need I would.
Around this time, I read a post from someone who wrote that even if it was the worst, cherish the days you have now before you really do have to deal with it. That post helped me/
If you do have fibromyalgia, it may not be as bad as your friend's as other posters who know more have said.
So, this weekend-don't waste it. You haven't officially got anything at the moment and, even if it later discovered that you do, don't upset yourself looking at the worst scenario which may never happen.
Why live as if it already has.
Wishing you a peaceful weekend, don't run to meet trouble and stay off Google!

Op how well are your migraines controlled? Your GP has jumped to fibro, but I have often wondered if I also have this condition, but after consultation with neurologist it is definitely just really bad migraine (not that is really any better as it does effect my life quite significantly). But I don't think your GP can really diagnosis this. Migraines can come with a whole host of symptoms including stomach problems.

I've been really ill recently, I get head pain, neck pain, pins and needles in my are face and leg. Sickness, diarrhea, exhaustion. Brain fog, loss of words and other stuff I can't remember right now. And it's all migraines 😫.

Please make sure they give you a good workup though to get you fully checked out.

This!! My scooter was LIFE CHANGING for me. I could do things again and enjoy life without wasting the little energy I had walking places. Ironically I now am a wheelchair user after a life-saving limb removal, but honestly don’t see mobility aids as a bad thing, they are to help you!

Which you are entitled to do! A fibro diagnosis IS scary. It might not be that, it could be a whole host of other treatable things, but there’s no shame in being scared, especially as your only knowledge of it is a person needing a wheelchair and can be scary as hell. There are loads of great fibro/chronic illness communities on Facebook and tiktok where you can support from people who’ve been there.

Fibromyalgia is a condition cause by trauma and emotional suppression. That doesn't mean it isn't real. It means the solution is through emotional work.

Sorry about your diagnosis, I hope you're doing as well as possible in your current circumstance.

I find it can be better to limit your intake of this sort of post (I too thought this might be someone getting checked for cancer) or "health problem influencers" with relatively minor shit because they really can piss you off. My own sister is health anxious and tone-deaf and drives me nuts.

My husband tried to complain to me about his usual man-flu crap while I was on chemotherapy and I just about bit his damn head off lol.

I have fibromyalgia. I have had cancer twice and I am currently in recovery from a bone marrow transplant. Fibro is painful and uncomfortable especially when it flares up but I am not confined to a wheelchair or on sticks. It is manageable and You just learn to live with it. I think the majority of cases of fibro people just cope aren't confined to wheelchairs etc.

Cancer can't always be cured as we all know. I have stage four and of course there is no stage five.
I also have advanced arthritis of my spine and hip and am housebound (often bed bound) due to this rather than the cancer. I live in constant chronic pain and can barely get across the room even with my crutches or rollator. Despite this I would always choose this over cancer. Stage 4 cancer is complete terror and I would take pain and disability over terror. That is my point.
I stand by this.

The GP cant diagnose Fibro

It may take weeks, months or even years to get a full diagnose of Fibro

You will need to see a specialist in the hospital

In the mean time: Make a Daily symptom diary, this will hurry the diagnosis up somewhat

Personally i had bloods at drs, then was seen by afew different specialists at the hospital, many more blood tests and alot of xrays before i was diagnosed with Fibro

They basically have to rule everything else out to get a fibro diagnosis

I didn’t say it can always be cured. Fibro currently has no cure. And you swept over my other points which are a huge part of living with fibro, the way other people view it, and this post proves my nicely.
what I’m saying is they are different things and minimising OPs concerns and upset because you believe them not to be as important as others is shitty. If you can’t say something nice and supportive and helpful, maybe don’t say anything at all.

I second this. I have been having treatment for stage 3 ovarian cancer for over a year. Previous to this I had chronic pain (not cancer related). The point in my life when I had extreme chronic pain that was not controlled (before I took prescribed pain meds) was one of the worst in my life. I have also been shocked at the difference in how I am treated as a cancer patient (very well) and a chronic pain patient (not very well).

OP - I have been told by more than one doctor that I 'may have fibromyalgia'. It's been confirmed to me by a rheumatologist that I don't. Fibro like IBS is a 'dustbin category' and often a GP will mention this with no real knowledge of what fibromyalgia is. I wouldn't worry right now about fibromyalgia, instead push for a thorough investigation of your symptoms. Wishing you the best of luck