Bit of advice : Hi not posted in a while as been so... - NRAS

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Bit of advice

JayneN
JayneN

Hi not posted in a while as been so unwell and in horrendous pain . Was took off MTX as too many side effects 3 months ago only taking 10mg . Oh boy have I been in pain since stopping. I’m still on Biologics but not working because no MTX. I’m now going on 7.5mg MTX starting Monday 😞and they’re giving me 8 weeks to show an improvement or Biologics will stop . Sorry for waffling but I wanted to ask about exercise and what would you recommend. I feel dreadful and put weight on and feel awful as have hardly been able to move for 3 months so now wanted to ask for some advice . I also have spondylitis with the RA .

Thankyou

15 Replies
oldestnewest

Hiya Jayne sorry to hear your struggling so much.

An exercise I can always manage is pool walking.

Go to your local pool and you need to be chest deep in the water. Then you just walk from side to side of the pool use your arms too. It’s a great way to have fun with a friend or your kids( if you have any)

You’d be surprised how good it is for you 💕💕

Thankyou , I will certainly try this sounds a really good idea .

Have a look on the treatments pages of the NRAS site. It might help you to make more sense of what the rheumatology team are saying to you about your treatment. It might also give you some ideas about alternatives to discuss with them! Sometimes I feel that they get stuck on a line of thought and can't see past that to other alternatives without a push from the patient.

JayneN
JayneN
in reply to oldtimer

Yes I agree it seems like everyone is repeating each other . I’m told to rest then I’m told to try light exercises yet it’s really hard when your in so much pain that you can hardly move let alone exercise. I will have a look now . Thankyou for your advice .

Hidden
Hidden
in reply to JayneN

Agree with you Jayne, advice is all a bit conflicting: I do not exercise in flare as 1) it usually hurts too much to move that joint at all and 2) if it doesn’t yet, it makes it worse, can’t win can you? I did some off nras site yesterday for hands n wrists & they played up later 😬 agree with others on swimming/water based exercise: I try n do this and walking when I can. All trial & error I’m afraid xxx

JayneN
JayneN
in reply to Hidden

Yes completely agree Kerena . I’ve been In a flare for 3 months not a single day when not in pain tbh . Now hopefully seing light at the end of the tunnel so I’m going to try walking in the water and swimming and see how u feel . Thankyou .

Hi there - get you about the methx - my side effects are also horrific. Am still taking it. I was looking for something else to help with flares and noticed the NRAS run a pain management course. This isn't available in my area but have been referred to a pain management clinic. There are also some pain management courses online (like on audible).

I find I need movement even when it's very painful - having something I can do at home is important as may be too fatigued or simply look too rough to leave the house!

JayneN
JayneN
in reply to Creakycat

Yes I can relate to that . I make myself active even if in bad pain but find I always overdo things and pay the consequences. I wish I could go live abroad in the warmth . Dreading the cold weather 😱

Sometimes we just need to turn up the volume on a favourite song, close our eyes n before we know it we’re sort of exercising 😳😳

I do that all the time 😊

What song always does it for you ? 💕💕

I’m a soul and Motown lover ... like all urban soul to chill to .... u ?

ABBA , blame my mum 😍 also have a love of Motown as a childhood friend played this all the time 😍

Wow. Sorry this is lasting so long! I walk. Sometimes slowly and not far but I need to get air. Having my lab boy helps but I’ve had times I need others to take him. Don’t be too hard on yourself right now. This too shall pass. Are you using ice and heat too?

JayneN
JayneN
in reply to nablur

Yes I’ve tried both but doesn’t make a difference . Hopefully going back on the MTX at a lower dose works . Even though I had the side effects I’d sooner have them than this constant pain . At least it shows the MTX was working as wasn’t in anywere near as much pain till I stopped taking it . I will get good hopefully I won’t let this dreadful disease win me .

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