Another problem & it's all so overwhelming 😥

Angel666

Had a follow up RA app yesterday & was glad as since stopping steroids the pain is back in every joint & lots of swelling daily especially in ankles so was hoping for a solution maybe by upping Methotrexate dose or something but over the last week I've had tiny lumps & blisters appearing on fingers & yesterday had a rash on both ankles so nurse thinks maybe an infection so stopped my Methotrexate for this week & told to see GP for maybe antibiotics or cream...cldnt get an appointment at surgery so up now getting ready to go to walk-in centre & joints just so painful, scared they will get worse as not taking Meds today...new to all this & feeling totally overwhelmed, teary & scared & add onto that total brain fog atm & trying to look after my disabled husband who also had a mini stroke last week 🤦🏻‍♀️sorry to rant but only place I feel safe to do it ☺️

frogmorton

Hi @Angel666

Gosh you poor thing so the nurse stopped your MTX and didn't offer anything else to help you with you pain while you recover from the infection? Did she at least give you another appointment with her soon?

I hope you at least have decent pain relief prescribed? If you don't your GP can help with that.

How is your husband doing after his TIA? and you you must be so exhausted and worried about it all. Do you have children or anyone else to support you caring for him?

I know I can't do much, but I am sending you my thoughts and some ((()))

Toni x

Angel666

Morning ☺️ no the RA nurse gave me nothing for pain & said she wld do a phone app in 3-4 weeks 🙄 only pain relief at moment is paracetamol, she did say she wld up my folic acid wen I'm back in meds....just off to walk in centre 🤞 Jon's left side is still effected but speech is back to normal, most of Jon's family live in London & I have a daughter who lives 26 miles away but she also has autoimmune disease Chronic Crohn's , is a single mum to a 11 yr old & works but does all she can when she can ☺️ I am totally exhausted you are right & think along with the poor sleep is what's making me teary 🙄 really appreciate your reply as makes me feel less alone with this ☺️ take care x

frogmorton

I think maybe you should look at getting some extra pain relief at least in the short term @Angel666 just to help you get through this next 3/4 weeks which will be tough for you.

Your Pharmacist might have some ideas if getting to the GP is hard, but I'd try your doctors you should have some priority being a carer who also has RA herself.

I am so sorry your daughter has Crohn's that's a tough one although I am sure she cares very much about you and Jon. Bloomin autoimmune stuff makes me so cross.

Best of luck at the walk in ((())) xxx

Angel666

@frogmorton managed to get seen by gp at walk-in centre this morning...good & not so good news, the rash on my ankles is being caused by the constant severe swelling which is causing trauma to the blood vessels which then leak & classic case of RA not under control & the tiny lumps & blisters are definitely not an infection but almost certainly a reaction to the Methotrexate so advised to contact the RA nurse I saw & probably need to come off it completely & tried on a different drug... information & advice line at hospital RA not open now till Monday between 2 & 4 so will ring then ☺️ Thankyou so much for your replies today they absolutely kept me going 💜

Baloo

I don't know what Methotrexate does. Every post I read about it sounds complicated so I am glad it was never required. Paracetamol for pain relief is where I ended up after realising that the full recommended dose was required before it does anything. I wasn't aware of that and find now that it kill three different kinds of pain (on and off) and the doctor was happy to prescribe it. I had swollen feet and legs too, with a rash all over, which looked like water retention and took weeks and weeks to solve. It was important for me to follow the doctors and specialists protocols so that between them, they can find out what to do. Get photos in case it goes away and you have to show it to a specialist after waiting months for an appointment.

Woofy

https://community.versusarthritis.org/discussion/comment/701131#Comment_701131

Gosh. I am so sorry you have all this to contend with. I do hope the medical team can prescribe something to help you over this difficult time. X

frogmorton

Hi @Angel666

Well done to you going to the walk in. Now they need to sort you out at Rheumatology ASAP. At least you have some explanations now which is better than not knowing.

Do let us know how you get on today ((()))

Toni x

Angel666

@frogmorton well I eventually got through & I'm no better off 🤦🏻‍♀️🤦🏻‍♀️ spoke to someone who seemed about 10 years old, didn't have a clue, had to repeat myself about 10 times & he still didn't get it.... Only hope I have is that the nurse I saw gets my message & calls me back before Saturday when I'm meant to take my next Methotrexate tablet as quite honestly I'm not that happy to take it when the GP at the walk in centre said its that which is causing the little lumps & blisters on my fingers, so ankles & wrists still blowing up daily, fatigue is beyond & still on nothing to help it 🙄

airwave

Rule No. 1- being an arther means you don’t have to apologise on here.

arther affects us all, we are all in pain, life would get rather tiresome if thousands started apologising every time they posted and in any case we have nothing to apologise for! We are more than arther, it does not define us.

its a grin, honest!

stickywicket

I do hope that the 10yr old (😆) was just a receptionist. They certainly didn't sound like a rheumatology nurse.

You've done well so far but you must keep goinģ. If the nurse hasn't got back to you by Thurs/Fri then try again. Try not to fret sbout the pain, fatigue and lu,ps, bumps and swelling. I know it's hard but worrying just makes everything worse.

By the way, I hope your husband is goinģ on OK after his TIA. I had one about 3-4 years ago. Got on the meds and never looked back.

Angel666

airwave thanks for replying ...I've dusted myself off & am doing what I do best which is self help 😁 putting freeze gel on ankles & wrists couple of times a day & freeze packs in evening before bed to limit damage, taking regular paracetamol which someone on here suggested & trying not to stress out as know they will do things at their own pace & nothing I can do about that but stressing definitely makes things worse x

Angel666

Hi stickywicket ☺️ thanks for replying, the 10 year old was answering the advice & helpline 😅 doing as much as I can to help myself & will try again Thursday if haven't heard back about meds as that's what I'm most concerned about really, do I restart Methotrexate on Saturday & when do they want me to start daily folic acid from 🤔

Jon is doing much better thankyou, home physio never happened so we've been doing it ourselves, having a 24 hour heart monitor put on next Wednesday & got a phone appointment next Friday from medical stroke team to see how he's doing on new meds x

frogmorton

SEnding my best@Angel666 it sounds as though you are too and have a plan in place - icing is good. I can't remember whether you can take anti-inflammatories🤔I hope so they should help a bit.

I hope all is well with your husband my own is having a 24 hour heart monitor too on the 28th. He's been having 'turns' dizzy spells. You are very sensible doing physio/exercises at home.

((())) for you

Toni x