Advice after preliminary diagnosis of probable RA - NRAS

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Advice after preliminary diagnosis of probable RA

greenwalls
greenwalls

I’m new here! I have just started investigations for inflammatory arthritis - highly likely RA - symptoms since Xmas & it feels as if it’s getting worse every day. Initial bloods came back this week with elevated RF and very slightly elevated CRP. Had a first meeting with consultant on Thursday who has asked for more bloods & once diagnosis confirmed would like to start me on hydroxychloroquine.

I have really busy life. 3 teenage kids to look after, I run a business, have builders in the house - I am the house taxi driver, cook, cleaner etc. By the end of this week though my pain/discomfort was horrendous. Worse areas are arms - biceps in particular (referred pain from joint I guess), top of feet, wrists & lots of swollen fingers - lots of muscle pain. Initial x rays have been done for hands and feet showing no damage or erosions. Am taking ibuprofen but it only really takes the edge off it. I am struggling to sleep properly.

My question is - should I really try to be minimising any activity which makes my symptoms worse until this disease is under control? How much should I just stop. I really don’t want to risk causing any damage to the joints but equally I can’t see how I can stop doing most ADL’s as my life is so busy. I am usually very active - I walk our dogs daily, do gym exercise a couple of times a week, go skiing, cycling etc but even walking around town picking up shopping yesterday resulted in foot and leg pain. I need a plan as the thought of feeling like this every day for ever more is really stressful. I understand that even if the first choice of meds (hydro....) is effective it will take several months to take effect.

Any advice would be very welcome as this all feels very overwhelming.

12 Replies
oldestnewest

Welcome you’ve come to the right place the collective knowledge on here has been invaluable to me and you will find a warm welcome from many.

It looks like you have been caught early as no erosion or joint damage. You may be one of those( myself included) where your bloods show very little in the way of inflammation but you display all the symptoms. stress !!! And it sounds like your under a lot of stress loves RA and make things worse. Even though our medication helps the most important thing is learning to manage this disease and it’s different for everyone. Rest, ice /heat packs pain relief. Epsom salt baths help me.you say you only get a small relief from ibuprofen. You could ask your GP for some naproxen or ring your Rheumy clinic and they could give you a steroid injection.

Keeping a diary helped me and my Rheumatologist . I could work out what sets a flare off . Although the bugger of a disease likes to throw a curveball every now and then. You sound very sensible and on the ball already as your asking very good questions. Gentle exercise while your flaring and unstable try to delegate house work etc.( I know that won’t go down well with teenagers 🙄) but you really need to slow down and have rest days and try to spread out your work load. I’m a mother of 3 boys do know this sounds impossible but my house proud side of my nature has gone out the window there’s always tomorrow too dust it hoover.Having RD and being a parent makes the juggling act much harder.

Please stay in touch any questions ask away someone will have an answer. If you just want to vent that’s fine we understand. We also like to have a laugh too . Sorry this horrible disease has found you 🥺

greenwalls
greenwalls in reply to J1707

Thank you for you reply. Definitely a good idea to start a diary. Will get going with that today.

This is the worst bit usually, and sometimes the disease goes a mad mad to start with! It’s miserable, so sympathy.

But don’t just suffer. Ask your rheumy for help, such as a steroid injection to tide you over. And/or ask your GP for stronger anti-inflammatories.

And listen to your body about activity levels. Don’t strain joints that are hot, red and swollen, but equally you need to keep moving. Lots of little rests throughout the day can help, especially if you are not sleeping well.

Shopping bags are bad, cycling or swimming is good.... this is the moment your partner needs to step up! And teenage kids need to be made aware that they could make a big difference too.

But unless you are in the small unlucky percentage, it will get better although will need a bit of patience.

Thank you for getting back to me so quickly. Fingers crossed my journey will be as straight as it can be. Apart from this I am very healthy - there is family history of RA/osteoarthritis though.

AgedCrone
AgedCrone in reply to greenwalls

Stop trying to be superwoman.....stress really is a no no with RA.

3 teenage kids means they are old enough to walk the Dogs ...no discussion........it’s their job now.

Plus taking over anything else in the house that you find stressful-until you are on meds that Control the disease. That will happen much faster if you don’t try to do everything yourself.

They are Teenagers not tiny tots ......you’ve got to explain what is happening to you and get them to help out for now!

Of course ..... a nice big bribe might help in which ever direction pleases them!

I hope you get a good drug regime soon.

greenwalls
greenwalls in reply to AgedCrone

Thank you for your reply. The children will have to step up for sure until this shave settled down. Today I feel fluey as well, 37,5 temp & so tired.

AgedCrone
AgedCrone in reply to greenwalls

With the virus that is around, you do realise a temperature & Fluey feeling suggest you should dial 111 don’t you?

Do you know what your normal temp is? Mine is usually 36°C......so if it was up 1.5°.....I would call them ... You’ve got enough trouble with RA you don’t want a rampant viral infection as well.

J1707
J1707 in reply to greenwalls

Feeling fluey is a symptom of a flare . I had “flu”3/4 times a year lasting weeks at a time miss diagnosed by gp telling me I had depression. So relieved when diagnosed in one way thought I was going mad 🤪. Rest is best when going through a flare. Not easy when your a mother . I use to try and push through it but it made things much worse and it lasted longer. Now I down tools and my flares generally don’t last as long ... learnt the hard way 🙄🙄

Hi greenwalls. Sorry to hear what you are going through. RA is a real bitch and it comes as a bit of a shock when the reality sets in but you have come to the right place as the people here are excellent - helpful, kind and understanding. I wish you well. x

Sorry to hear all your problems but you really have to listen to your body it took me a long time to accept my life has to change which was not good for me always on the go active all the time but now I ask for help my family and friends are great things will get better but like I said you really have to slow down good luck all the best learn to relax x

Just to say my hands and wrists started symptoms first: The first special item purchase I made was a hands free dog lead that goes across body (I have the kurgo 6-in-1 dog lead, I purchased on amazon uk) made dog walk so much better as I felt so much wrist pain each time I walked my dog on the lead (she's a tiny dog only 4kg but it still hurt). Before it didn't feel safe as very young dog on normal lead, my wrist so weak that she would easily pull it out of my hand. Nice lady on phone helpline from NRAS was really helpful as it was my first properly stressful thing (I couldn't type but that isn't a safety issue, dog walk is higher priority for me in my set up)

Just an update. After my last post I was seen at the early arthritis Clinc at hospital. Consultant did exam, took history, looked at the blood results, X-ray hands & feet & ultrasound hands, wrists, feet & ankles.

X-ray showed no erosions, ultrasound no synovitis but a Tendonitis in one wrist, bloods elevated RF & slightly raised CRP (12),

Her conclusion - not rheumatoid but;

Hormonal related joint arthralgia due to sudden oestrogen drop of menopause & possible viral infection trigger, age appropriate OA & local irritation (tendonopathy) because of above.

Her advice

Seek out hormone advice on menopause related issue (start HRT) but could be looking at 18-24 months before this settles down due to the hormonal changes

In the meantime advice was to have a v quiet 3 months - 100% good nutrition, gentle exercise, minimal stress, pain relief as needed & review in 3 months. That’s the plan to see if it can settle down.

I am still struggling with same symptoms - pain/stiffness malt joints, flu like symptoms as day goes on if I do too much - but no unbearable pain at night - presumably because I have really cut down on what I’m doing.

Current lockdown will help me achieve this 3 month plan so I guess everything has a silver lining.

Do any of you have any thoughts on this diagnosis?

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