RA progressing ?: Hi have RA in my knees and hands and... - NRAS

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RA progressing ?

Shyandretiring profile image

Hi have RA in my knees and hands and have had it for nearly a year.

I have been on Methotrexate for the last few months which has done wonders for my pain , but for the past 3 weeks I cannot sleep for more than 2 hours without my back and neck really hurting, but once I have got up for an hour I can go back for the next couple of hours until again my back is really painful.

Could this be more RA happening in the body out of nowhere ?

I am really worried as if it is the Mxt is not having any effect on it, has anybody had this happen to them and if so what did you do about it ?

Kind regards

Shy

40 Replies

Hi Shy I’ve had RA for 5 1/2 years the first 2 I did really well on MTX then all hell broke loose my RA was everywhere ( it was just in hands and feet to begin with) like you waking me in the night. It’s taken over 3 years and many different drugs till I found the right one and now things are starting to settle but I’m not the person I was . I would contact your helpline as it sounds like your having a flare or indeed your RA is more active. They will help.

.

Shyandretiring profile image
Shyandretiring in reply to J1707

Thank you J17073 years phew, I hope you get back to some sort of comfort soon.

Can I ask how it has you are not the person you were ?

Yes I will contact the rheumy team after 3 weeks of this.

Kind regards

Shy

J1707 profile image
J1707 in reply to Shyandretiring

I have always been a fit and active person and continued to be In the first 2 years. Slowly my ability to exercise and recover from exercise got chipped away . Then covid and no proper care during the first lockdown saw me get worse. It was a slog to get back to mobility. Although I’m now off my crutches I can no longer manage long walks as my right ankle always gives me trouble. I also become exercise intolerant. Just doing 5 or 10 minutes of extra exercise means pay back with fatigue or a flare and will take days to recover. I have also been diagnosed with fibromyalgia recently.

Shyandretiring profile image
Shyandretiring in reply to J1707

Oh you poor thing !I am genuinely so sad for you especially as you were fit and active for years.

It frightens me to read about your fatigue and pay back as I am going exactly the same way.

I am so despairing of massive depression as I am trying to stay as positive as I can.

Bless you J1707 I hope they can bring the Fibromyalgia under control for you.

Shy x

J1707 profile image
J1707 in reply to Shyandretiring

This may not happen to you .so many do really well and get their normal lives back . Most people on this forum are ones that are struggling and those doing well don’t use this forum . We all need help one way or another and being proactive in our treatment is a must so if things are getting worse or symptoms change it’s a must to contact your team . I think a lot of my problems are due to Covid and the lack of care for nearly 12months. Don’t look for problems but do act and ask for help . X

Shyandretiring profile image
Shyandretiring in reply to J1707

Thank you for reminding me that some people are in remission or coping well with the meds that they are now on.

A negative mindset and procrastination about what to do next is not a good combination but the antidote has been yourself and all the kind and wise people on this forum, you are all solid gold. X

Well said! X

Blodynhaul profile image
Blodynhaul in reply to J1707

Yes, you're right about people who are well with RA not posting as much. It's easy to get very depressed reading all the bad accounts on here - though very helpful and informative it is. The way this year has been for me, I can identify with you saying you're not what you were. I feel totally changed, so physically vulnerable, totally unfit, body shape changed, muscles gone, feel old and a cripple and with permanent damage (especially to hands) and for the first time feel it could be permanent, though I do have hope things will improve, but feels like a long road if so. Sorry to sound depressing! You put it well - "don't look for problems bur do act and ask for help" . Thanks X

Hi BlodynaulI feel for you and feel so sad I send my sincere best wishes for your health issues improving in the near future.

Shy x

Thanks so much Shy, your best wishes help a lot. My RA's always been a private thing and I've known anyone else with it personally, so this forum is wonderful not to feel alone, plus learn so much & feel people care, who can truly understand. THanks so much again X

Ritaritis profile image
Ritaritis in reply to J1707

Hi Shy, I'm assuming your bed is comfy. I added some extra padding on top of my mattress as I have good and bad days, waking several times throughout the night to get comfy, 'very' occasionally taking a painkiller. This annoys the cat intensely. I was active walking miles, some hill walking on days off from my office job, COVID and redundancy last year put paid to that. I was diagnosed with RA March this year. Physio gave me a choice 'exercise or become housebound'. Don't always feel safe walking on my estate as some of the kids pick on me but have and use an exercise bike 2/3 times a day few minutes at a time building up the amount of time I do and it is paying off. Also do some chair exercises. I take methotrexate with no problems and will use a hot water bottle daytime. Talk to your nurse/physio and/or our helpline for advice. Good luck and good health. 🐕🐕

Thank you for getting in touch Rita

I think matching a mattress to a person is tricky to say the least, but my mattress is an orthopedic one which is not bad for me even with my back even if it is just for the first couple of hours !

I really feel for you being made redundant last year and then the diagnosis this year and those @#@#*#@ kids on your estate makes me so mad !!!

Good to know that you have found some exercises that you can do albeit painful, it really is all about movement for us isn't it.

Your cat sounds great and I hope is a great comfort to you, animals are such good companions aren't they.

Kind regards

Shy

Hi Shy. I agree you should let your Rheumy team know straight away that you’re suffering more problems and your sleep is disturbed. They may want to tweak your medication. It can happen that more areas get affected by RA I’m sorry to say but you can get help.

Thank you LolabridgeI was hoping that once you got the Rheumy somewhere then that was that and it would not progress any further ( wishful thinking )

Oh dear!

Kind regards

Shy

As others have said, contact your medical team. RA is a systemic disease which means you bave it throughout your body although it may only be obvious in a few places.

It can take quite a while to really get it under control. I started on MTX which worked well for a while, but then the disease became active again so another drugs was added. And then a third after another few months. These drugs modify the disease, rather than suppress it completely, so for many of us it is a comstamt juggling act to keep it controlled.

Hi helixhelix

I genuinely thought that the Mtx would sort my pain out and that would be that, but if you are taking all these different meds, how is your body coping with the toxicity ?

Kind regards

Shy

Absolutely fine. It’s been 11 years now. I look after myself properly - good diet, exercise, sleep etc - and I believe that helps my body cope.

Love to know the details of your diet & exercise but realise that you may not want to share !

I can bore people forever about this! Shortly after diagnosis I went down the “diet” route and tried all sorts of things that did nothing really for the RA. What I have finally settled with is a simple approach which is no highly processed food, lots of plants and fish and only small amounts of fatty, sugary food. I eat what I want, but if I want chocolate biscuits I make them from good ingredients! I really try to go for quality, so eat very little meat but when I do it is high quality stuff with no antibiotics, organic etc etc.

Exercise is daily. Use it or lose it, so lots of stretching and range of motion exercises - just a few minutes here and there throughout the day. And then something else, a walk, a pilates class or QiGong.

And good sleep hygiene. It makes me a bit boring but I try to get 8 to 9 hours sleep a night, or as much as I can as do wake up several times as get stiff.

Diet is so important anyway for everyone but especially for people like us.I like the fact that you but organic when you can I should but it's so expensive isn't it !

Making your own sweet treats is so good ( not that I do ! ) but you choose what goes in so I get it.

I try to eat single ingredient foods but it can get boring so naughtyness is never far away ...

Exercise wise you sound like you have cracked it, little and often plus stretching is the way to go.

Sleep is sadly not in our control but 8 hours is the dream isn't it.

You deserve to be out of pain with the choices you have made and thank you so much for sharing that with me.

Very much appreciated

Shy x

Luckily I am able to buy good food, and have our own veg patch…..but so much is about having the time to cook using cheap, seasonal veg so the budget then allows you to splash out on something special.

I had a similar story. Fight for a biologic up front. I’m now on MTX and RoActemra, but Enbrel was added first and really helped as well. Ro just got me to full remission.

Thank you HanaleiBa

I will fight for a biologic up front if they get results.

Kind regards

Shy

I'm afraid it doesn’t quite work like that on the NHS. If you ask your Rheumy will explain but til then this might put you in the picture nras.org.uk/resource/biolog...

Thank you so much for the link x

Hello, sorry to hear about your back and neck pain, certainly worth raising the issue with your rheumatology team.I had a similar issue, when I mentioned it to my consultant he examined my neck but apparently RA issues with the neck are generally experienced when you’ve had the condition for some time. Could your neck and back pain be unrelated to your RA?

Hope you feel much better soon!

Hi Katie-Mag

Neck pain is not a new thing for me but the whole back pain thing is new but as you say and I really hope it is unrelated but we shall see ( cue anxious face )

Thank you

Shy

Hi Shy, I agree with the others. First point of contact Rheumatology and don't hold back. Keep a daily journal si you can show them exactly what's going on. Secondly I would advise you to go to the NRAS website and learn about all the available medication for RA. I believe it will help you greatly to have some knowledge when talking about it with Rheumatology. The benefit of the drugs has always outweighed any fear of possible side effects by far. I hope you will find an additional drug that works for you.

Hi stbernhard And thank you for your advice which I will and have taken on board.I am journalling in a way ( dates and severity of pain ) but not how I am feeling about it, but will start to do that right away !

I will share all of this with Rheumatology and will have a look at the NRAS web site for some med knowledge.

Very much appreciated !

Kind regards

Shy

You can download this Medicines booklet from our website nras.org.uk/product/medicin... but do take the advice given and contact your Rheumatology team urgently to discuss. Take care

Thank you Tracy

I will take the advice given.

Thanks again

Regards

Shy

Something nobody else has mentioned. I have OA in my neck & back, cervical & lumbar spondylosis. I was diagnosed with OA as secondary when RD was diagnosed so have had the two treated from day one. This might not be the case for you but I've been on MTX for 11 years & my spondylosis & other OA affected joints haven't responded to it, they are medicated differently. Only once I reached my current amitriptyline dose & found a good exercise routine was my normally healthy sleep no longer interrupted due to the pain. Previously it relented somewhat if I got up to walk around & but I’d go back to bed for another few hours, get up, walk around… If you don't have an upcoming appointment do contact your Rheumy team. As you'll know poor sleep impacts on our waking day. Your Rheumy will examine you & should have imaging done to determine just what's going on with your neck & back. Hopefully whatever is causing your pain will be found quickly.

Thank you so much.Yes that's it , exactly what I do , bed for 2 hours , Back pain, get up until the pain subsides and then back to bed until to painful again.

I am in touch with my rheumy team now but have to wait to see them face to face.

Once I can, I will suggest imaging if they do not.

What is your exercise routine out of interest as with your OA and Spondylosis it must be difficult.

Kind regards

Shy

I’m not sure if this will be encouraging or more depressing to hear but RA very rarely affects the back (the neck yes but not the back). I’m only 38 and I have the same sleep problem but it is due to OA, not RA. I’ve been on MTX for a few probs with no issues apart from waves of nausea. I hope you find an answer x

Deeb1764 profile image
Deeb1764 in reply to Elmo333

My neck and back problems were due to Fibro as the consultant said it is rare to get RA in the regions I was showing ie back neck and breastbone.

Thank you Deeb1764

I do hope that you have them under control now x

Thank you for your reply Elmo

I hope your nausea can be sorted out, have you tried the number injections with MTX as my nausea bouts ended when I started the injections x

Thanks. Yes I’ve been on the injections for about 3 years but still get some nausea. It works for me though so I can cope with it x

Hello, I’m sorry to hear of your plight.I have similar. Well controlled for 3 years on only 10mg of Mthx, but since both Covid jabs, two nasty flares in 3 months. Am now on 20mg of Mthx and had 2nd steroid jab a week and a half ago.

I still don’t feel 💯 and am worried I’ll flare again once the steroid injection wears off.

The 2 most recent flares have been mainly in my hips and knees, no swellings in hands or feet 🤷‍♀️ kept waking up in the night with the pain. But ESR very high (in the 100’s), CRP only slightly raised, which is apparently not typical according to my Consultant.

It’s odd, as when I was originally diagnosed my hands were in a state.

It’s a strange disease, no rhyme or reason as to where it moves around.

I hope you get yours sorted 👍👍

Thank you ChockyukYes it's such a random disease isnt it, no 2 people are the same it seems.

I hope that all goes well for you and that you do not flare up after the steroid injection wears off and also that you can get back down to 10 mg MTX fingers crossed.

Kind regards

Shy

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