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