Flaring again

[TheMarfs]

I’ve been on Sulfasalazine for 3-4 months now. It’s been working pretty well to date. However, I have had a shoulder flare along with hand stiffness and foot pain the last few days. Tbh I get mild hand stiffness most days anyway. I am not sure why this has started again and wanted to ask if, when you get the right meds, this should disappear completely or if this just all part of the whack-a-mole games RA plays, whatever meds you are on. I was only diagnosed in January 2022 and I have had a fun couple of years trying to work out what the hell is my new “normal”.

Thanks!

Mxx

[Runrig01]

Unfortunately very few people find themselves in true remission with their meds. Flares will still occur, although usually less frequently and less severe. Often it’s a stressful situation or pushing yourself too hard, that triggers it. It’s all too easy to overdo things on good days, but it catches up

[TheMarfs in reply to Runrig01]

Thank you! Really appreciate you taking the time to reply. I’m a solicitor and I don’t always manage my stress well, so suspect that plays a part. Mxx

[Amnesiac3637]

Completely agree with Runrig. It’s such a lottery as to how your body is going to react to your disease on any given day (and sometimes to the hour) and if you’re mainly comfortable and relatively pain free that’s usually worth putting out the flags for! That may be what you aim for in a new ‘normal’.

I’ve had serious, refractory RA for over 30 years and am well used to its annoying habit of lulling you into a false sense of wellness only to leap up and bite very shortly afterwards, usually when I’ve overdone it cos I feel good!

Hopefully, you won’t be like some of us oldies who have had untreated and significant joint damage from RA and you’ll be able to live your life with tweaks of your medication but you have to be prepared for the unpredictability of this condition and do your best to accept that you have it. Hope you’ve got good support from family, friends, employer etc -worth a great deal. All the very best. X

[TheMarfs in reply to Amnesiac3637]

Thank you for your kind reply. It’s hard to know what’s going on sometimes. My Consult has told me they’ve caught mine v early but it’s a more aggressive type. I’m grateful there’s lots of medical options around. One of my knuckles goes slightly odd and enlarged on one side though so I do worry about the future ahead. I try not to think about it. Husband and work v helpful and kind but it’s still my pain ultimately. It can feel quite isolating from that pov. Mxx

[welsh12 in reply to TheMarfs]

Yes if there are any groups near you good to attend with others that may know what you are going through a survey I saw said significant majority of us don't share when we are in pain or struggling with family and friends. Me for one thats all I would talk about ha

[TheMarfs in reply to welsh12]

The only groups here are weekday lunchtimes in garden centres. I am 41 and working full time. I’d quite like to meet some people of a similar age because of comparative experience. I am not sure those groups are for me.

[welsh12 in reply to TheMarfs]

Yes I understand that. I work too but have attended some groups they are in garden centres! but I have learnt from others and people in their 30s 40s attend too. Maybe Nras can advise you on groups for people in your age range. Social media have people with RA who blog write about their experiences and this group is a valuablesource of information. Best wishes

[Lolabridge]

If your flare continues or reoccurs frequently do let your Rheumatology team know. From your description of what's happening to you it could be that your meds need tweaking or supplementing. As you are youngish (compared to many of us!) and working in a demanding and stressful job, you may well get flares from time to time. But don't put up with debilitating pain - ask for prescription pain relief. The weather can have an effect too!

Try to reduce your stress levels if you can. Many find yoga or qigong and mindfulness or meditation can help with that. Good luck!

[TheMarfs in reply to Lolabridge]

Thanks! I do seem to skirt close to burnout a lot sometimes. I probably do need to do something relaxing and focused!

[Lolabridge in reply to TheMarfs]

Unfortunately, most of us suffer from fatigue too so pacing yourself is important as is making time for relaxation.

[Sunshinereturns]

Have sent you a message!