Pain pain and more pain : Still at the start of my... - NRAS

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Pain pain and more pain

Annemarie24
Annemarie24

Still at the start of my journey trying meds out , must be flare time as iv got a bug or cold or sumit , pain is through the roof , my arms are red hot to touch really throbing, if it wernt for my partner and my 2 son's i would of give up by now 3 months of being in pain with docters and rhuemo not taking me seriously enough parracetamol / naproxen or diclofenac / nefopram dont touch the pain and at the minute docs have said only to take parrra and the diclo if the pains really bad , makes it worse that all this corona virus i feel even worse for kicking of about the pain im in , but should i really have to keep living like this , i phoned the rheumo nurse again today the pains to much fingers crossed they help , any advice very much appreciated it

23 Replies
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Hi Annemarie24

I am so sorry that you are suffering like this just at the moment when normal service through your hospital has been affected by Covid 19.

In my experience if you are hurting and feeling like you have the flu... that’s all part of the flare.

There are things you can do to help yourself. Rest is key and I mean proper duvet day rest.

Avoiding stress and panic is really important.. this may seem silly but tension feeds pain. Try whatever works for you to relax and sit with the pain if you can.

Write down all your symptoms so that you don’t forget anything. When you speak to the nurse again tell them the symptoms and the impact they are having ie. I can’t feed myself, I can’t get dressed. If pain is stopping you sleeping then you should tell them that.

Stay calm but be insistent.

Best of luck to you... I hope this can be resolved soon xx

Annemarie24
Annemarie24
in reply to Lyndy

Yea think il take my self to bed for the rest of the day , even befor the covid i the docs still wouldn't give me pain meds , i shall deffently start a diary thank you x

I am so sorry to hear you are in pain Annemarie, stress and worry as Lyndy says seem to make things worse and if ever there was a time to feel stressed this is it. However, try and keep a diary of symptoms as it is all to easy to forget. Make sure you are hydrated, get rest, try and distract yourself from the pain (not easy I know) and find something to relax and ease the feelings. I'm so sorry you are having to go through this and at the beginning of starting meds. Take care and keep strong, people are here and will support you.

I hope that you get a response from your rheumatology service.

It's difficult but trying to distract your self from the pain helps - reading? listening to music? watching a film? watching birds and trying to identify them?

We all here have been there and distraction really does help.

Pippy25
Pippy25
in reply to oldtimer

Totally agree oldtimer, in my early days I used to how can I put it buy into my pain if that's the correct expression and while pain is pain and it boy does it hurt and drag you down as we know, I have learned ways and techniques to help me distract even if it's just for a short time.

Iv tried a few things to distract me , but most things i enjoy i need my hands so just a pain really

Pippy25
Pippy25
in reply to Annemarie24

What about music, a favourite TV show or boxset? Maybe some meditation techniques? Something that would relax you. RD has targeted my hands and I hear what you say as they can hurt so much it's like having two shovels on the end of your arms or that you are trying to do something wearing a pair of oven gloves. Speaking of gloves...would some therapeutic gloves help to reduce the swelling, there are different types. Good idea to take pictures to show your rheumy.

Annemarie24
Annemarie24
in reply to Pippy25

Yea il have to look into the gloves, i think I'm strugerling beacuse i.have been trying so hard to deitrack my self from the pain , playing with the kids arts and crafts baking etc iv got a pond so i often go look at fish, i wish I was a drinker but im not so can't even turn to booze for lil distracter 😂

Hi Annemarie. Are your joints swollen and red - I know your arms are but is it worth taking pics of them and sending to the Rheumy? Can you open your fingers out etc. I feel for you and I hope the pain will be over very soon. xx

Arms look a little bigger but not much a little red , they feel red hot to touch along with my back and hips and knees and hands and wrist never ending list , if started taking pictures to show rheumo if they ask thank you x

Good luck, let us know. x

Forgot to ask you if you had been given a steroid injection in the rear? If not, ask the rheumy nurse, if you get to speak to her/him, if you can have one to tide you over. xx

Yea i had one middle of feb and I'm on 10 mg steroids daily . Not sure how often ur allowed injections can i ask for another one ? X

Probably not yet, but on saying that you can ask - the worse thing they can say is no. x

Have you got good pain meds, take them regularly and my two basic lifesavers hot pads and cold pads , work a treat x

Annemarie24
Annemarie24
in reply to allanah

Not docters did hive me nefropam at first but then when i run out said parracetamol and take the diclofenac if needed , i cant take co codermals they make me sick , i have asked and told rheumo nurse and docters about how much pain im in , asked for pain meds but answers always same no , i feel like a smack head would have an easier time geting his drugs 😂🤣its a joke really , I'm taking the parrra and the diclo it dont touch the pain im using ice packs but heats not helping at the min , x

allanah
allanah
in reply to Annemarie24

Feel for you, have you tried gp for pain meds

Annemarie24
Annemarie24
in reply to allanah

Yea my docters are shocking , they don't follow up , i phone them they don't phone back when they say they will , they didn't even pick up i was anemic for past god knows how long my rheumo saw it straight away .with how low it was she was suprised also , my docs refused to refer me to rheumo for months then finally did when i threatend legal action 😂 a week later i had my first rheumo appoinmnent as was diagnoised on the spot , i cant even get parracetomol of the docters lol x

allanah
allanah
in reply to Annemarie24

This is so like my daughter in law, they only referred her only after I we t in andoterly quoted RA protocol at him! Shes in the same state as you trying to get help. Loads of love, xxx

Annemarie24
Annemarie24
in reply to allanah

I hope ur daughter in law gets sorted soon it's a joke thank you :) x

allanah
allanah
in reply to Annemarie24

You too sweetie xx

Just an update today i have finally got through to them rheumo nurse helped docs gave me tramodole and sumit to sleep stil in pain but not as bad I have a rheumo telephone apointment on Friday hopfully il get some new meds thank you for all the support and advice x

I hope the tramadol helps and that the rheumatologist will be able to do more for you. I well remember the pain at the start of my illness (just over a year ago), but it went after a relatively short time. As far as I remember, once I started taking Hydroxychloroquine the pain went very soon and I haven't had it again.

Best wishes.

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