Stiffness with RA

[Alan7690]

I’ve started to feel stiff recently to the point I’m sometimes struggling to get up off the sofa after sitting for a while. I’m trying to walk 1.5 to 2 miles a day when not raining too much which is ok but doesn’t appear to be helping this issue. I’m on 15mg of methotrexate weekly.

[Jackie1947]

I no longer sit low as it's trouble getting up 😀 maybe you are also over exercising

[Alan7690 in reply to Jackie1947]

My rheumatology nurse said that distance was ok so not sure on that.

[Fruitandnutcase in reply to Alan7690]

Do you wear a pedometer and if so how many steps are you taking? I’ve done 6K today which is nice for me. 6-8K steps a day is what I aim for.

I can push myself and do 10K+ but I am stiff and boy do I ache the next day although I ache for the first hour or maybe a bit more when I get up every day. So although I can do more than 10K steps I’ve stopped doing that. I can’t see the point in doing too much. I also find I can do longer distances if I break the distances up and have a break in between each few K steps.

I’m 75, I fractured my sacrum three years ago which was when I stopped being able to walk long distances - at that point I honestly thought I was going to end up with a mobility scooter. I have osteoporosis plus inflammatory arthritis and osteoarthritis in both hips and bursitis in my right hip. I try to walk for an hour every day and I do an hour of pilates twice a week. For me it is gentle exercise every day that keeps me going but if it’s not right for you then do what does feel right for you. I take hydroxychloroquine and top up with the odd paracetamol when I need to.

I’d definitely recommend a pedometer - either one you clip on or on your phone or I use an AppleWatch. That way you can work out what’s best for you.

Apparently the 10K a day step thing is just an arbitrary amount thought up by someone so I no longer feel I’m doing myself a disservice if I don’t make that distance.

nuffieldhealth.com/article/....

[Alan7690 in reply to Fruitandnutcase]

I have an Apple Watch and short walk is about 5.5K and long one about 8K which i manage both ok it’s just if i sit to long I struggle

[Fruitandnutcase in reply to Alan7690]

That’s ok then. Sounds similar to what I’m doing. I also altered my watch ‘rings’ so that my target isn’t 10K. I found it quite depressing never to get there.

If you’ve been checked out by your rheumatologist and things are ‘fine’ then it sounds as if both you and I just need to keep moving for our bodies to feel good.

I’ve just changed my mattress because I realised while on holiday that my expensive Tempur mattress was not doing my body any good at all so my new firm but bouncy mattress has made a massive difference to how I feel in the morning, you could look at things like that and your chair height and firmness even. It’s all so annoying though isn’t it!

I can’t remember if you said you’ve had physio but you could look into getting some gentle physio exercises that you could do every day to keep your body flexible.

You could try asking your doctor or the nurse you spoke to for a referral or find a good private physio for a couple of sessions to start you off or can find that sort of thing on the ROS website or I really like Margaret Martin’s Melioguide website.

[WilfDog in reply to Fruitandnutcase]

HiI bought a very expensive Tempur mattress to see if it helped me. It was a massive improvement on my old mattress, but my husband says it is no good for him and wakes up with back ache. What did your Tempur mattress do that made you feel worse? If you don't mind me asking.

[Fruitandnutcase in reply to WilfDog]

Well even though it was one of the temperature controlled ones I used to get really, really hot in the middle of the night and I think it moulded itself round my body - sort of trapping me in it. In the morning I found it very difficult to turn over.

We had had a Tempur bed years ago and of all the mattresses we’d had (and we’d had a lot!) it was the least uncomfortable and probably the one we had the longest but when the rise and fall mechanism packed in we bought a regular bed with a ‘normal’ mattress. Not much of an advert for buying another one that it was the least uncomfortable. I never ever wanted to have a ‘lie in’ with the Tempur whereas with the new one I’m quite happy to lie in for a while.

My husband had no problem with it at all so I felt very bad buying yet another mattress. I’ve found I need something fairly firm - definitely not orthopaedic- I’ve tried one of them in the past - but with good bounce to help me turn over in my sleep. It is now on the guest bed - if they don’t like it they won’t be stay8ng all that long anyway🤞

Most normal women buy hats or shoes or handbags - I buy mattresses!

[WilfDog in reply to Fruitandnutcase]

Thank you. I don't really get hot. Mine is a very firm one and my husband says it's like a board! 🤣I find it easier to turn in bed with it. If it's softer I seem to sink in it and find it hard to turn, but I get the bounce may help.

We have an old dunlapillo on the guest bed, but that's really comfortable, so our guests are happy to stay! 🤣 Not that we have many. I may swap them!!

Thanks for the information. Yes, our purchase lists are very different aren't they!

[arvine in reply to Fruitandnutcase]

Can i ask what id the brand and features of your new mattress?

[Fruitandnutcase in reply to arvine]

Yes, this is what I bought this time round dreams.co.uk/dream-team-swa...

but from experience it’s not a good idea to buy what suits someone else. It was interesting because the young man who served me said exactly the same thing. He gave me the type of pillow I like, explained the labelling system and off I went with my pillow trying out beds. No pressure or hard sell at all.

Before I went I had tried their online quiz to see what should have been the ideal mattress for me and three different Tempur mattresses popped up. In theory they should have been ideal but as that was what I was replacing I knew it wasn’t what I needed.

I already knew roughly what I wanted from the holiday and I knew from past mattresses what I did not want - definitely not orthopaedic, definitely not completely foam although this does have foam, definitely not too soft so it was just a case of narrowing it down from there. I need ‘bounce’ so that I don’t struggle to turn myself over and I need a decent level of firmness.

The mattress was on a half price bank holiday offer, one of those ‘Offer closes Tuesday’ so I got it for half price, when I looked at it later in the week I was absolutely staggered to see it was back up to its full price. I had already decided I was going for ‘cheap’ and just getting rid of it if / when it started not to suit me, I didn’t expect to get such a bargain though.

Plus they offer a 100 night free trial. In the past I have bought mattresses and beds from John Lewis, Tempur themselves and other decent bedding stores - first time I’ve tried a bed supermarket but I would use them again and definitely recommend them. In fact a couple of years ago I stripped the bed in the rented house we had to see what the bed was and it was a Dreams bed and it said ‘Firm’ which put me off, I didn’t think I needed a firm mattress but it looks like I did.

I had actually reached the stage where everywhere we stayed if I slept well and didn’t waken up in pain I stripped the bed to see what type of mattress I was sleeping on. Neurotic or what?

So, not only do I no longer have the pain I had before but I have turned into a person who actually lies in bed after the alarm has gone off. Excuse the long essay - as you have no doubt realised my quest for a comfortable mattress has been long and hard. I feel like the princess from the Princess and the Pea fairy take - perhaps she had inflammatory arthritis and osteoporosis too 🤗

[Runrig01]

I stiffen up after being inactive, like sitting. It’s unfortunately part and parcel of rheumatoid conditions. It’s the opposite of the likes of osteoarthritis, which improves with rest, inflammatory conditions are aggravated by rest. I’m on both a biologic and 25mg MTX, and still wake up stiff for around an hour, and hobble like an old lady after sitting. My rheumatologist says there’s not much to do about it, so I tolerate it. I also have issues with heart and lungs from inflammation, so I find if I walk 6K steps,despite stopping frequently, I pay the price the next few days. Sorry I don’t have answers

[KittyJ]

Me too, I can’t sit for too long or I get really stiff so I get up regularly, even if to just walk around and get a cup of tea before sitting again. My sofa isn’t a very high one so I bought a firmer foam inner to replace the one in the cushion and that has helped me as I don’t sink into the cushion any more. Probably not much help to you I know. You could try to see how long you can sit before you get stiff and make sure you get up and move before stiffness sets in. 🤞🏻

[cathie in reply to KittyJ]

This is what I’d do, try not to stay in one position for too long. It sounds as though a physiotherapist could help more than medication- at least at first. Small movements regularly.

[Amnesiac3637]

If you’ve only recently started to feel this stiffness it may be that you need more medication. Most with RA get stiff when sitting for too long or on a soft sofa but sometimes it’s because your drugs aren’t giving you enough welly.

That certainly happens to me if I start to flare due to if whatever I’m on starts abandoning me. It usually means a change of medication or more of it or more pain control. You don’t say how long you’ve been on MTX at that dose but it may be worth contacting your rheumatology team and telling them what you’ve told us.

Keep getting up and moving regularly as suggested but I would def check it out. All best.

[Madmusiclover]

I would ask for a medication review myself.

[Brushwork]

This is something I struggled with, particularly getting up in the mornings or after resting, I’d be hobbling…. until I began the biologic therapy. Now my RA is controlled and the stiffness is much less an issue, it just seems to flare a little bit occasionally. For this reason, I wonder if it’s a matter of the RA not being properly controlled?

Perhaps have a chat with Rheumy team, because stiffness that affects day to day living might be relieved with a different medical intervention.

Obviously, just a suggestion and only based on my experience.

[HappykindaGal]

Yes! And the stiffness returns in under five minutes of sitting back down again. As for the morning. I look as if someone has shot me through the ankles. To be honest, I just live with it as part and parcel of RA now. I’m not the person I used to be that’s for sure

[Annpisan]

My Rheumatologist has told me that morning stiffness and stiffness after sitting is a direct indication of inflammation, and thus a need for a med review. She is always pleased when my stiffness is reduced, as it indicates that my inflammation is at lower levels. I have not found that type or duration of exercise has much bearing on my stiffness, it is more a barometer of the activity of of the disease itself, unfortunately. When I am flaring, I wake up hourly at night to shift, as my stiffness feels like I have lain in the same position the whole night. Sorry, not much help!😪

[Bails67]

it is sort of RA unfortunately.Might be worth mentioning to your nurse as your medication may need adjusting. Exercise won’t help with stiffness, I am very active and always have been. It will strengthen your muscles and is good if you have OA. My consultant always told me use it or lose it.I have had RA for well over 20 years and I know if I hadn’t moved I would be a lot worse now.

[Vixen2]

I’ve had RA since i was 21. I’ll be 53 tomorrow!! I have an infusion of Infliximab every 6 weeks. Plus i have 2 serious eye conditions. I’m having a flare at the moment. (Right hip). Plus my lift’s been out of service for 2 weeks. I’m on the 4th fl. 75 stairs up to my flat, So i’m a bit ‘pissed off’ at the mo!

Are you on any other meds? Maybe you should try & get a medical review. I often try & go for walks regularly. But i live in Covent Garden. Loads of tourists get in my way. So annoying. I scream if they go near my feet!!! I know how frustrating this disease is. Have you tried swimming? They say it’s the best exercise. Gentle on your joints. Good luck.

[bpeal1]

It sounds to me like RA symptoms are beginning to creep back in. Stiffness after sitting for a while can be an indication inflammation is returning. If I was you I’d be contacting my rheumatology department and asking for a medication review.

[stbernhard]

Hi Alan, I would highly recommend that you do some Qigong every day. I've been practicing Tai Chi and Qigong for a decade and more and I can almost guarantee that it will help with your stiffness.There are numerous videos available on YouTube. I suggest this one google.com/url?sa=t&source=... .

And thisgoogle.com/url?sa=t&source=...

NRAS also has some Tai Chi and Qigong exercises within their SMILE RA programme.

[janmary in reply to stbernhard]

I agree with your recommendation! Great for improving balance and gently stretching joints. Should be widely available on NHS - sure it would save money/ reduce falls/ reduce physio referrals!

[stbernhard]

Give it a try, you have nothing to lose and it certainly won't do you any damage. All the best

[Alan7690]

Thanks all for all the info etc and I'll have a word with my rheumatologist

[Pooch22]

hi it may be a bit of osteoarthritis coming in, and that’s quite a distance maybe split the walk.

[OldTed60]

Hi. Have you come across a rheumatic autoimmune called Polymyositis? I ask having been diagnosed with RA in 2011 and put straight on methotrexate. I had exactly same problem as you describe for a year or two where I couldn’t rise from seated even from upright chairs. Sometimes it was really embarrassing! I too walked/ walk similar distances to you and now am rediagnosed with Systemic Sclerosis/ Scleroderma and Sjogren’s plus hypermobile spectrum disorder and degenerative discs in both my lumbar and cervical spine. I read that my scleroderma antibody points to myositis as an extra and looked this up. One of the hallmark symptoms seems to be weakness and stiffness in the quads/ thighs and lower back/ hips and core - problems rising from seated. So I’m now wondering if I had Myositis in first place rather than RA. Perhaps worth considering and asking your consultant about rather than assuming it’s all RA. Treatments are broadly same but maybe different treatment pathway. Myositis sits under a rare neuro muscular umbrella. So many general rheumatologists know too little about it and just diagnose and treat bilateral stiffness, pain and muscle weakness as part of RA or Lupus with likely additions of OA or Fibro.

[Sunshinereturns]

You should definitely NOT cut back on exercise, inactivity is our worst enemy in many ways. I had this exact symptom and required more medication. I am no longer stiff getting up - you need your medication reviewed. Also you need to be doing some kind of strength/toning stuff as walking is great but is simply aerobic and you will get stuff if you don’t stretch properly. Pilates or yoga very good.

[WilfDog]

I think with inflammatory arthritis its a given that when we stop and sit, we stiffen up. I try to leep moving a lot to help woth muscle strength and stiffness. Do you do a regular exercise routine? Stretches and then a head to toe exercise routine. Along with your walking I'm sure this could help build your muscle and keep your tendons and ligaments stretched, which may improve your stiffness. Good luck

[Tired-fed-up]

it’s interesting to read the range of comments here. For me, stiffness and pain - hobbling down the stairs in the morning, and struggling to walk after sitting - are a part of everyday life 😕. I find it’s worse after a walk - although that may be because I need to rest for longer with my feet up afterwards.

[medway-lady]

Stiffness is part of RA especially in the morning on getting up and going. But in remission it's not usually sn issue. So perhaps your meds need tweaking or upping etc. I don't know but suggest you contact your RA team. Well done on the walking too. I find like in the theatre the other night that moving the legs a bit helps. Four hours in a theatre seat was a worry but it actually wasn't a problem I do the stuff like on a long flight just wiggle toes and move calf muscles. x

[Green230461]

Stiffness in the morning 10-30 mins is normal according to my consultant but constant stiffness may require new improvement on meds. Keep well

[J1707-]

I struggle with stiffness big time . I have fallen many times . Walking helps at the time as long as there is no pain and your gait or stride isn’t compromising your joints . My hand were very badly effected. Numerous burns and spillages with stiff hands closing too slowly or grip not complete.

This is a sign your disease is active and what you’re taking isn’t enough . Do contact your team they maybe able to give a steroid injection to tide you over until an appointment with your rheumatologist.

[Tonkie]

hi everyone, I’m having the same issue. I started yoga 2 months ago and I still don’t feel any stronger or better. Everything is still so stiff. I went for my first swim this morning and was in a lot of pain with my hip and lower back throughout, and afterwards my feet were agony from OA. I’m only 36 and I don’t know how to manage all of this at all. I’m on Hydroxychloroquine (6 months now) and methotrexate injections 20mg a week (but staying on methotrexate is so hard with all the infections I get - so I’ve probably only had around 14 weeks worth spread over 5 months) I just want to feel a bit better and have less pain. My hand has stopped swelling up though so I assume the medications are helping. But the rest of me feels awful. You’re not alone.

I’ve also gained a stone from being less active and the codeine has messed up my metabolism I think. But I’m so tired and can’t keep going like I used to so finding it hard to get the weight off.

[ruth_p in reply to Tonkie]

I don’t think your medication is working well enough and you need to speak to your rheumatology team. At 36 you still have a lot of life left ahead of you and probably want to continue working as well.

[ruth_p]

I would say you’re medication isn’t working well enough and you might need a change or an addition.