Head embedded in tissue box.: I must admit my first... - NRAS

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Head embedded in tissue box.

RosieA profile image
24 Replies

I must admit my first major flare had me in tears most of yesterday. After 5 days of hoping it would all go away it hasn't. As advised by Consultant, I had reduced MTX (they're worried it isn't suiting me and over suppressing immune system). Under normal cicumstances Consultant said would have me in for a meds change. Having to be cautious with Naproxen as a few tummy issues a couple of months ago had me checked out for gallbladder etc (I personally think it was over zealous prunning of apple tree and ribs were dodgy). So feel between a rock and a hard place. Do flares go away by themselves? Is it rest, rest and more rest? (Not something I'm good at). Any advice on managing a flare would be good. P.S have just managed to get head out of tissues long enough to eat good portion of marmalade - so perhaps there is ray of sunshine. Hope your all keeping safe and sane.

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RosieA profile image
RosieA
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24 Replies

Painkillers and plenty bed rest works for me. Get that pain under control first then rest. I find if I sit in the lounge I’m very tempted to get up and potter on, but, if I stay in the bedroom I switch off and rest better. Listening to some relaxing music also diverts me from the pain and discomfort. Listen to your body and always go with the flow never try to fight it cos it will always win. Take care and hope your feeling better soon. Tomorrow’s another day I always say 🤗 X

RosieA profile image
RosieA in reply to

Yes. I had never thought of it as something that will always win and upon reflection you are right. I do try to fight it too hard, trying to regain some foothold on the pre RA me. But in my heart the best way to achieve that is to learn to listen better to my body and go with the flow more. A lovely response thank you.

in reply toRosieA

I’ve lived with this dammed disease for 23yrs and was just like you always trying to get back to “normal” if there’s one thing I’ve learned it’s to tweak and adjust your life and go with the flow it makes life much easier and less stressful. Stay safe 🤗X

RosieA profile image
RosieA in reply to

And I suspect easier for those around us. The malestorm of stress I created yesterday in my strive to do things didn't help anyone I'm ashamed to say. I should know better at my age too. Calmer today and all happy with knowledge that the only thing coming is a cake (mainly 'cos I want to eat it). Thank you once again.

Shamrox profile image
Shamrox in reply to

Hello. This is shamrox! I have a question about pain and what works best to control it. Can anyone let me know what rx's they take or did take and what works? So far ibuprofen is the only good relief i get. However i am definately hurting in my stomach. ?? Help.. thanx to all of you!!

in reply toShamrox

Hi Shamrox, personally for me its Tramadol and Paracetamol that kills my pain and plenty rest, rest , rest. Take care 🤗x

Sockknitter profile image
Sockknitter

Gentle hugs RosieA. Sometimes for me heat and cold on effected joints. Bag of frozen peas and a hot water bottle. You need to try to see which works for you. Gentle stretching can be useful as the muscles, tendons, etc can get cramped if we stay still too long. If you have a bath and someone to help you out if it, bathing in warm, not hot water allows the joints to flex whilst the water takes the weight off.

And yes, rest, rest, rest.

RosieA profile image
RosieA in reply toSockknitter

Have just popped out of luxurious shower and am now sitting on bed wondering how it got to be nearly 10.00 o'clock. Normally, would be throwing off wellies after walking the dog (Pre C19). Funnily enough, the physio had given me exercises for stretching hands and feet and instructed me to do them not only then but when I flared (I dismissed the latter - who me!!). You have reminded me. Thank you, I will did them out and gently start them. I agree stretching is so good once started, not just for body but also the fatique. Thank you for your super response. Once hair is dried I will start some very gentle stretching - including I hope today a smile.

This bloody disease chooses what it wants to do. Last year was a bad year for me I had a flare that lasted for 7/8 months steroid injections, rest ice/ heat packs, naproxen ,cocodamol Etoricoxib physio lots of rest . Then one morning woke up gone. Started new meds this year still not right but has improved.hang on in there x

RosieA profile image
RosieA in reply to

How dreadful. What a year and now this dreadful virus to add to the mix. I'm not too clever on pain relief. Cocodamol had me staring at a white wall for 8 hours - if I moved I felt ruddy awful. Now allow Naproxen if in dire straits or paracetamol - lucky me. You don't happen to know what they try if MTX isn't for you. I do so hope this year proves better for you in the long run. Take care and thank you for your kind response.

in reply toRosieA

They will probably add another DMARD eg hydroxychloroquine of sulfasalazine unfortunately I’m allergic to both . If you have 2 failed DMARDS then you qualify for biologic s which I started January. Instant results initially then I had a chest infection so off for 4 weeks have restarted but not as successful I’ll keep trying... no choice at the moment 🙄 you will get there x

RosieA profile image
RosieA in reply to

Sadly, will have to come off MTX (it's overly suppressing and struggle to get normal white blood, neutropil counts etc). Mind you my neutropil count was only 1.4 when diagnosed. Was hoping that could remain on it as otherwise tolerate well. Ho hum! Yes, will get there in the end as you say. I'm usually quite the optomist - Pollyanna is my heroine- so here's to a vaccine for C19 and a cure for RA! Now that would make for a fantastic year. x

Oshgosh profile image
Oshgosh in reply to

You are so right. The disease does what it wants when it wants.

Summerrain14 profile image
Summerrain14

Bless you Rosie and so difficult with medication options being a little more limited at this time. I find that a combination of things gets me through my flares. Usually steroid injection, Naproxen co codamol balancing rest with gentle movement as sitting for long periods doesn’t work well for me. A good audio book or box sets to try and distract myself as much as possible too. Thinking of you and sending incredible gentle virtual hugs. Keep in touch with us when you can. Gail x

RosieA profile image
RosieA in reply toSummerrain14

Thank you for you thoughtful response. Yes I have learned the hard way this time. I do need to be gentle with myself. I have taken it very calmly this morning and am already reaping some benefit. Everyone on here is so reassuring and that in itself is 'healing'. I am like you, sitting for any time is difficult. I always seem to have something to pop up for. But only thing I have done is make a cake - a lovely recipe with ground almonds, fruit and no beating etc. Perfect. Thank you once more Gail. Keep safe.x

allanah profile image
allanah

Thinking if you , flaring is the pits . My rheumy early on told me the benefits of paracetamol taken properly at the most per day and it really helped me , also ice packs alternated with a lovely warm blanket afterwards is good. But yes your body tells you to rest up and it does pass. Occasionally rheumy will give me steroids to tide me over .

RosieA profile image
RosieA in reply toallanah

Feet are up, book resting next to me now. Have learned. Hot water bottle will be dug out for hand. Frustration, anger and tears have abated. I just wish I had approached the forum earlier for advice. I might not have got myself in such a pickle. So many thanks for your response and advice on paracetamol . Hope your managing to keep safe.

allanah profile image
allanah in reply toRosieA

Not at all. I went through a huge learning curve too and got advice on here too. That was 2011 and I'm still learning xxx do go on NRAS.org.uk if you havent already, loads of help there and if you join you get a very good magazine every 3 month full of research and stories xx

RosieA profile image
RosieA in reply toallanah

Yes, joined NRAS immediately I was diagnosed in October. Just about to read online mag. I think I have read everything they have but probably need to do so all over again, now that my knowledge has moved from 0% xx

allanah profile image
allanah in reply toRosieA

Amazing isnt it how you become an expert patient

in reply toRosieA

I only recently found deep heat helps. Rub all over feet and hands on go socks and gloves.i found this has given me relief

RosieA profile image
RosieA in reply to

Must try and get some on my internet shop (when I get one again!!) Yes, heat helps me most of all. A used to be umbillically attached to my hotwater bottle. Thought I'd said good bye to it for a while. Ha Ha. Haven't used Deep Heat for ages. Thank you for the tip.x

in reply toRosieA

Hope it works.. hot water in this heat OMG my idea of hell 😁

RosieA profile image
RosieA in reply to

Had a chuckle at that. Frozen peas would be mine. It's my right hand that's like a relentless tooth ache. Feet and ankles not so bad when I elevate them - so will manage avoid any form of torture there. But thanks to you all and some good common sense I feel more relaxed and am coping better. Not drifting between tissue box and marmalade jar now. So many thanks to all.x

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