Emotional moment: Wow where did this come from? Got... - NRAS

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Emotional moment

Deeb1764 profile image
Deeb1764

Wow where did this come from?

Got home from taking Mum out for the day and just a wave of tiredness hit me and then the shoulder neck and arm pain got bad followed by hips bum and lower back. Plus headache.

It then hit me it’s been 2.5years of just constant pain some days low some high but just as I though great Olumiant will kick in and get things back on track the fibromyalgia decides to up its game.

I just needed to moan so I have it out of my head before I go to sleep and did not want to rant at hubby as it will upset him that I am feeling low tonight.

Moan over thanks for reading xx

52 Replies

Poor you - it must be exhausting.Hopefully offloading in here helps a bit 💐

Deeb1764 profile image
Deeb1764 in reply to Boxerlady

I know everyone on here been thro the mill and many for a long time but it just hit me tonight in the face. Just be lovely to wake up one day and be pain free for 24hrs with no kick back for whatever you did that day.

Some days its just crap isn't it x

Good you had a great day out, little increments, maybe sooner than later you won't ache so much after a day on the go.I expect your body is in shock xxx

Big hug

Sometimes it just gets too much. Give yourself a big hug from me x

Moan away - you deserve it. Always go to bed hoping for better tomorrow. You can live in hope if you die in despair. xx

It’s been very humid in Yorkshire today .. lovely, but felt like a storm brewing as it got to 24 degrees, but didn’t rain. Hot days make me feel like I’m dragging my legs round and head-achy, so could be the heat and humidity for you. I think we should be allowed to have a wobbler whenever it’s needed. Not let stress build up in us. Whether we wobble to ourselves or tell our OH’s/family. My OH gets very upset if I don’t feel well and I used to think he was fed up of the RA but he said not at all and that he’s sad and frustrated he can’t make the pain stop. I hope tomorrow is a good day. 🙏🏻 I know very little about fibromyalgia tbh. 😢 Does physio/hydro help? .. and maybe soon you can go to a hydro class again. I’m so missing mine. Sending gentle hugs and hope as you are tired you will have a good sleep. 💗x

Sending a virtual hug 🤗x

The constant pain is so wearing. There’s never a day off from it. And it eats away at you. Fingers crossed for a better day tomorrow! Xx

Sometimes you think you are getting by as best as, then whoa it stops you in your tracks. No rhyme or reason, it just does. So let it out...today is almost done and tomorrow is another day and I know you will face it with the fortitude and determination within you Dee. xx

I hope you have a good sleep, things often look different in a new day.

Hope things are better tomorrow

Are you able to figure out which of your pain is from fibromyalgia and which is from the RA? I am working on this but I really don't know. I know my hand and feet and ankle pain is probably from the RA. Don't know if the pain in the arms is from RA pain radiating from my wrists. Somedays I open the fridge and pray that the milk container is near empty so it doesn't hut too much to lift it. I get really sore in the bum muscles, back and arm and leg muscles. Not sure if that is RA radiating or if that is the fibromyalgia. The rheumatologist says the swelling above my wrists is fibromyalgia my doctor says it is RA. I have no idea.

LoneEra profile image
LoneEra in reply to smilelines

It can be very difficult to tell - and sometimes there is interplay between the two. Generally, the muscular stuff is more fibro-related. But fibro does not typically cause swelling, so I’d agree with your GP on that. I have trouble lifting the milk with my left hand but that’s due to RA in the left elbow. Are you being treated for your fibro? And/or doing much self care? Xx

smilelines profile image
smilelines in reply to LoneEra

just being treated for the RA. Once that is under control the rheumatologist says I will understand the fibromyalgia. Both came on at the very same time. The first rheumatologist I saw said it was just fibromyalgia. The next said it was both. Makes me wonder if the rheumatologist even knows about fibromyalgia as I thought that was more of where your brain feels pain yet there are no physical symptoms. I was wondering if my immune system was attacking my ligaments and muscles thus causing the puffiness above my wrists and soreness in the backs of my legs etc. I know my hand ultra sound showed that my tendons and ligaments were swollen while my actual joints were ok.

LoneEra profile image
LoneEra in reply to smilelines

Ugh...no wonder you are in pain. That’s odd about the ligaments and tendons. You’re right that fibro has no “mechanical” cause - it’s the central nervous system gone nuts. I’d be tempted to ask for a second opinion from another rheumatologist to be totally honest x

LoneEra profile image
LoneEra in reply to LoneEra

Just thought it might be useful for you to fill in the fibro criteria sheet the doctors use. This will help you understand if it actually is fibro - and if you get a result that suggests it is, this should nudge the rheumatologist along. fmauk.org/files/acr2016Fibr...

Deeb1764 profile image
Deeb1764 in reply to LoneEra

This is easier than the one I located but at the moment my SSS is 12 I am just in such high fatigue moments which is the thing I find the hardest to cope with. I was always living off adrenaline of work and play 5hrs sleep, woke happy and zingy and now I feel crawling all the time. When I push myself to do stuff it just slaps me round the face like a wet fish lately. I can cope with the pain most days but when the fatigue this high is just drags me down.

I am trying to be positive today and off to give myself a good talking too in the mirror. Like some deranged woman. x

LoneEra profile image
LoneEra in reply to Deeb1764

Slap in the face is exactly it. And you’re not mad, I give myself a good talking to sometimes as well.

I prescribe a day of resting up. I know that’s hard for you! But it sounds like you need one. And maybe stick a TENS on if you’ve got one and if it helps you (I know not everyone likes them).

I’ve just started using this app called “Curable” for retraining your brain around pain. I’m enjoying it so far. Lots of science along with exercises. I’ll let you know if there are any amazing breakthroughs with it! x

Deeb1764 profile image
Deeb1764 in reply to LoneEra

Yes got a TENS I think it is a day for it!

Hessie5 profile image
Hessie5 in reply to Deeb1764

I just bought some of that Floravital as my tiredness and fatigue, and everything was ridiculous this week - forcing myself to get things done. I spoke to the nurse she said to take some iron and Vitamin D as my blood works numbers a bit of kilter 😏 Have you had your bloods tested recently ?

Deeb1764 profile image
Deeb1764 in reply to Hessie5

I take cut d everyday but will look for this next time out x

smilelines profile image
smilelines in reply to LoneEra

Thank you.

smilelines profile image
smilelines in reply to LoneEra

It is too bad that we do not have private care here because I would definitely go for another opinion. It is just crazy that the rheumatologist says my puffiness is from the fibromyalgia. Makes me wonder if she knows what she is talking about.

LoneEra profile image
LoneEra in reply to smilelines

You should be able to ask to see another rheumatologist on the public health care system. Speak to your doctor about it and see 🙂

Deeb1764 profile image
Deeb1764 in reply to smilelines

I think the bottom hips and lower back is Fibro as this is a new thing recently and then shoulders and shoulder blades and neck also the rest is RA and knees OA. Learning what affects what I have been bad with the wet weather with Fibro but it all merges on bad days x

J1707 profile image
J1707 in reply to smilelines

I too am learning the difference as I’ve just been diagnosed with Fibromyalgia.

My rheumatologist said if your joints are not tender too touch it’s fibromyalgia also if you exercise more and find yourself getting worse it’s fibro . Muscle stiffness from resting and all over pain rather than localised it’s fibro. I get skin sensitivity where it burns ( feels like a hot iron burning as well as nerve tingling and burning in hands and feet . A shower feels like the water is hot pins hitting me) also get icy sensations under my skin .

The lower back /bottom and thighs pain with heaviness is fibro.fatigue is my most crippling symptom. Hope this helps . These are the easier symptoms I’ve identified as being fibro not RA.

Deeb1764 profile image
Deeb1764 in reply to J1707

went to have a hot shower yesterday to ease the bones and omg it hurt my back and shoulders so much. Think it will be a bath later instead x

J1707 profile image
J1707 in reply to Deeb1764

Epsom salts bath really helps. X

smilelines profile image
smilelines in reply to J1707

Yes, thanks. It is weird because if I do any exercise my hands get super stiff. I guess that is the fibromyalgia. That was one of the first symptoms that I experienced. I get the extreme fatigue and overall stiffness. My thighs especially feel super stiff. Sounds like this must be the fibromyalgia, too. And if I press on my muscles on the top of my bum and arms it really hurts. Seems like these are Fibromyalgia symptoms, too.

J1707 profile image
J1707 in reply to smilelines

It’s horrible isn’t it . No painkillers work x

smilelines profile image
smilelines in reply to J1707

Yes! No painkillers work. Really awful, indeed!

Moan and offload as much as you like. We understand. I hope you got a good night's sleep and are feeling better this morning.

Slept like a cat with no awareness and feel at least less morose. Just need to be brave and do my weigh in later! x

Lolabridge profile image
Lolabridge in reply to Deeb1764

So glad you slept well and hope today will be a better day for you. X

Don't give up after nine years I finally was sorted with the right pain relief, I still get tired and I too burst into tears yesterday... take one day at a time. Best wishes 🌻

With you all the way. 😢 x

No word to make you comfortable just could mention you in my prayers

Dee, I hope today is better for you, have a nice soak in the bath 🛀wishing you well x

Oh my darling sad to say it is all part and parcel of our cruel diseases. Your allowed to feel down and i know we all feel it i know i do. Hugs.xxxxxx

Deeb1764 profile image
Deeb1764 in reply to sylvi

thanks Sylvi - I know I am not as bad as many on here but some days it just knocks you for 6 the constant of it all. x

sylvi profile image
sylvi in reply to Deeb1764

Our diseases are all different, but we all share the same worries and we think we are not as bad as others yet we are in our own body. xxx

I'm walking in your shoes and know how you feel. Just wanted to send you a hug and a smile to let you know I care. x

Deeb1764 profile image
Deeb1764 in reply to Ticketyboo1

thank you over tired after doing a day out for my Mum so she had a nice time this week and over did it with that pacing thing I never get a hang of!

J1707 profile image
J1707 in reply to Deeb1764

Me and you both .. pacing ??

Sometimes it does you good to have a moan. Constant pain is exhausting. I don’t think people who aren’t in constant pain understand. I was diagnosed with RA in 2004 and have been in constant pain in one joint or another since then. Sometimes the pain is niggling but more often it’s much worse. Even my mum doesn’t understand what it’s like.

Sorry you feel that way but hopefully if you talk to your Rhymy they will help, feel better soon love it’s such a horrible disease

Hear to listen and send you hope - know you are not alone - we got you ☺️ - Hessie

Deeb1764 profile image
Deeb1764 in reply to Hessie5

everyone been lovely and with our gorgeous Oreo being poorly too think it all has caught up with me!

Sorry to hear you are in lots of pain Deeb. Do hope it lessens soon. Best wishes

Sorry you are feeling so cr4p. I tyihnk you get used to it and just bumble along then one day it hits you.

I went for private physio on my shoulder leading up to Christmas last year. Eventually I stopped because I felt I’d got as good as I was going to get, it just hurt - not the agony it was when I started and by that time I could do things I hadn’t been able to do etc and I was so surprised when the physio said she was absolutely shocked at the beginning when I said I felt I was pretty much destined to live a life of pain (until I died).

Considering there are loads of us out here living a life of pain I was surprised that she was surprised. She obviously didn’t realise that.

Hope you feel better soon.

You did right, youve got to offload and you've got many listening ears here. Tomorrow is another day 😉🤗

It’s great you had a lovely day out. Spend today in bed with a good or trashy book xxx

Also… who knows where the line is between RA and Fibro…. RA is joints and internal organs; fibro is tendons, ligaments and muscles….

‘You hurt’ that’s the only thing that matters. Rest up xx

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