Newly diagnosed 😳: Hi folks, I've come... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Newly diagnosed 😳

Dana18 profile image
12 Replies

Hi folks, I've come across this site and joined having been diagnosed with fibromyalgia last week. There was also another 3 conditions which I can't remember for the life of me what they are (and I'm a trained nurse😬). I can only imagine this is due to brain fog and the shock of being diagnosed with fibromyalgia. I think another, more lengthy, appointment is required. Maybe use my voice recorder app to assist me with taking in the info🤔👌.

So, for me, I am 41 years young. I was involved in a very low impact car accident 2 years ago where I injured my back. I was heavily pregnant with my little one (late in life, unplanned little one) and was sitting awkwardly. I heard something ping and it's never healed. I was also diagnosed with PTSD. My symptoms started after this. I have been off sick from then (1year being maternity leave).

My pain started in my back, radiated across my shoulders down to my hands. I can't even open a bottle or a jar anymore, it's so bloody frustrating. I have days where I struggle to walk, I am in so much pain.

The pain for me is a strange type of pain. The only way I can even attempt to explain it is like the pain you get when you hit your funny bone, a tingle blaugghhhh type of pain. This is the constant pain I have that never dissipates. The more severe pain that comes and goes is like muscle strain. Almost like I've been to a gym lifting weights which are too heavy, and the next day you can't even straighten your arms. Please let me know I'm not alone with these symptoms 😥.

I don't sleep well at all. I toss and turn every night and the little one is a bad sleeper too...I'm doomed!

I have a capability hearing with my work next week. There's no way I can do my job, moving and handling is completely off the cards, takes me to move and handle myself! I don't want to be unemployed though. I'm in a bit of a mess. Everything seems to be spiraling out of control.

So, that's me👍😬...hi everyone!👋

Apologies for the life story😇

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Dana18 profile image
Dana18
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12 Replies
Painny profile image
Painny

Hi Dana18

That sounds terrible, and welcome to this forum. You will gain by being here 🦋

On the subject of capability, please do not panic and let the know you have a disability so that they can make reasonable adjustment. Contacting Access To Work is another useful govt site. Acas can also mediate between you and employer. By law they cannot invoke capability, have an informal chat with Acas. Hope all goes well

I am in the same boat, struggling everyday with pain and fatigue. Take care my friend 😍🦋

Dana18 profile image
Dana18 in reply toPainny

Thanks for this Painny. I will definitely look into this👍much appreciated.

Hi Dana18

You're not alone with your symptoms, mine are very similar. In fact I have days where I can't tolerate having clothes on my skin. The only thing I can bear is my supersoft dressing gown inside out (so the seams don't touch me.

I do have a full time job, but it has taken me a long time to find the combination of techniques which allow me to keep functioning any where near normally.

I have just started seeing an osteopath who uses trigger point therapy, acupuncture and deep tissue massage. Whilst the sessions are painful, it is making a difference in my mobility and the level of pain.

I hope something here is of comfort - there is life after diagnosis ... It's just different.

Dana18 profile image
Dana18 in reply to

Aw thank goodness! It's good to know there is even a crack of light at the end of the tunnel. This diagnosis has just floor me to be honest. Trying hard to stay positive. Thanks Kaluva👍

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

healthunlocked.com/fibromya..., hello there , I read your post and yes it’s very daunting, I have read on the forum more than once that people that have had some kind of trauma ie car accident have later on been diagnosed with fibro, so it does make you wonder , I had an awful lot of stress come my way years back and the diagnosis of cfs/fibro came at a later time , so it does make me think if that was a trigger. Not sleeping and having a little one to look after as well must be very wearing so I quite understand that your job is too much now and with the pain , I hope the hearing at work goes okay , keep us posted , always good to have a chat here. There is a link above should you want to lock your posts for more privacy as then only our community can see. xxx

Dana18 profile image
Dana18 in reply toYASMINTINA

Aw really? I didn't even think of that. It's probably best to lock it thought so I will defo do that. Thanks Yasmintina. As far as I have read, which really isn't much with brain fog, little one and sheer exhaustion, it is brought on with some kind of trauma. Emotional or physical. Thanks for your reply hun, hope your well too. 👍

Bambi60 profile image
Bambi60

Hi, you are not alone - from what I understand we process pain in a different way to others. I find it harder to hug my baby grandson, so can only imagine how hard it is to be a new mum with this condition. I truly hope you find a balance between all the different strands of effort in your life but would suggest you see if any of your local health authorities run fibromyalgia self-management courses - they are really helpful and can signpost you to local groups etc. For me the worst bit was isolation - and finding groups etc was invaluable. I wish you and your little one love x

Dana18 profile image
Dana18 in reply toBambi60

You're absolutely right Bambi. I'm going to go back to my GP and get on to some experts in this field. The overwhelming feeling of uselessness is going to have to go and find someone else to bother🤣 thanks Bambi

Midori profile image
Midori

Try to push for Medical Retirement with full pension rights.

Its difficult, would there be a desk job you could do, maybe? Not on Frontline Nursing, obviously, but something in Admin, maybe?

Cheers, Midori

Dana18 profile image
Dana18 in reply toMidori

Thanks Midori, I think this is going to be too difficult given my recent diagnosis. I wish that was an option. I definitely will be looking into this as this would take a lot of strain and stress off. There's no admin jobs I would be able to do, these are different training and bands, so would be a massive difference in pay for me. I've not looked into benefits yet but will do this when I get on top of things. I've got a meeting with my union on Monday so fingers crossed they can help too.

Thanks hun

Julia10 profile image
Julia10

Hi 👋

It’s easy to see how overwhelming things are for you, anyone would be.

I can relate with regards to working as a nurse & then finding in struggling & couldn’t do it anymore. As I understand, Under the equality act you’re workplace has to offer “reasonable adjustments” to help you do you’re role, (try to look at the policy). Take care of yourself & you’re not alone in how you’re feeling. 🤗

Dana18 profile image
Dana18 in reply toJulia10

Thanks Julia10, I will look into this. I have a meeting with my union on Monday. Sure they will know all the ins and outs.

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