Proper grown up flare!?: Hello everyone, I've been... - NRAS

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Proper grown up flare!?

26 Replies

Hello everyone, I've been hijacking Tilda's blog ( thank you ;) so thought I would write my own for some advice? I was diagnosed earlier in the year after two years of constant stiffness and pain, i was diagnosed as Sero-negative and the RA was mainly affecting my hands but also my knees, ankles, shoulder. Well Tuesday afternoon I developed a dull pain and stiffness in my left arm between my armpit and elbow, by 5am this morning I was in complete agony. I've been to see my GP who said she thinks it's coming from the shoulder joint and that I'm flaring. I'm not disputing what she's saying but if it's coming from my shoulder joint why is my arm in pain and not my shoulder.....sorry if I'm being dim!? I know this is a medical question also and I've contacted my helpline who haven't replied yet but can you use a pain relief gel, naproxen and co-codamol

together..... I'm in so much pain I will stuff it all down if so? This is my proper real flare but have had fairly mild ones before but nothing like this so my total respect and sympathy to anyone who has suffered like this before and now. Thank you x

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26 Replies
Tillytop profile image
Tillytop

Hello Amanda

So sorry you are in so much pain with your shoulder. I have shoulder problems and can completely relate to the associated arm pain. I think that when the shoulder is inflamed, it can trap nerves, tendons etc and we also tense up because we are in pain which I think can also cause the rest of the arm to hurt. My arms nearly always hurt as you describe when I am having trouble with my shoulders.

As for what to do - as you say we are not medics but if you have pain meds/anti-inflamms available, you might find they help. I can't take anti-inflammatory tablets but I do use anti-inflammatory gel as well as pain meds and I find that does give me some relief. If you are unsure about what combination of meds is safe to take, you might find your pharmacist can advise you on that - or better your GP since you have seen her about your shoulder.

I really do hope your shoulder pain eases soon Amanda - and that the helpline calls you back so you can talk to them for advice.

Tillyx

in reply to Tillytop

Thank you Tilly for your valued advice and yes you're right I need to contact a professional about my meds I think I'm ok with what I'm doing to help it but will double check tomorrow. No reply back from Rheumy helpline hopefully tomorrow but all your advice has been brilliant in the meantime! Xx

Shell1967 profile image
Shell1967

Hi Amanda,I totally understand your arm pain,I have been suffering with. Its shoulder joints for a year,much better now that I'm I'm on mtx,but pre diagnosis and while waiting for mtx to work I was in severe pain,from my shoulders down to my elbows,it was awful,it would keep me awake all night,I got told it was a flare in my shoulder joints causing it all.i used heat pads,freeze gel,ibuleve gel and zapain.my hubby used to rub from my elbows up to my shoulders which helped greatly.on a positive note once it got under control the pain has subsided hugely.but when I have a bad day with my shoulders,my arms always play up too,so for me its defintly related.hope it gets better for you soon.itake care Michelle xxx

in reply to Shell1967

Thank you so much Shell..... Was your pain in both of your shoulders my right side is fine and hopefully will stay that way? RA is so weird!!! Hubby has been great also as I can't get dressed or undressed without help, I think if I can get some proper sleep that will too. Hope you're ok and thanks again xx

Shell1967 profile image
Shell1967 in reply to

It started in my right but went eventually into my left,I hope yours isn't the case,you are telling me RA is very weird !!! I have been very well for months and today in splints on finger and thumb !! Also my left knee and right toes playing up,very weird lol !!! Probably a flare but after a few pain free months its horrible to experience this again :((( my hubby last year had to shower me ,wash my hair,brush and dry it,dress/undress me as I was unable to lift them at all.my shoulders I can remember were the worst hit that time !!! But positive thinking I'm able to do all these things now.good luck to you xxx

in reply to Shell1967

Oooh you've had a tough time but you sound so positive :) did you manage to work whilst going through all that? There's no way I could have gone in today couldn't drive there for a start! People have said to me..... Did I think that the weather changing had anything to do with but I haven't got a clue!!! Thank Shell, hope you feel better soon too xxx

Shell1967 profile image
Shell1967 in reply to

Morning Amanda,as we were saying about this weird disease,I've woke up and my thumb and finger are completely fine !!! :)))) they were in splints yesterday lol !! Yes I still managed to work but I only do 18 hrs a week,that's enough for me !!! The weather didn't affect me last yr but I am wondering about this yr as its very wet and damp isn't it,who knows but I'm off to work now happy again.take care have a good day Michelle xxx

in reply to Shell1967

Hi Shell, that's good that you're feeling better today, it's bizarre with RA like you say one day we are crippled with pain the next day it's fine! A lot of people I know who don't have RA have been saying their joints have been aching.... so maybe??? Thanks for your support and have a great weekend :) xx

helixhelix profile image
helixhelix

Remember the song..."wrist bone connected to the arm bone, arm bone connected to the shoulder bone etc etc". Pain often gets referred, ie it appears well away from the place where there's the problem, as well as things travelling along routes such as muscles and tendons.

As Tillytop said, best to ask doc or chemist re combining pain meds... but whatever you do do make sure to check what is in the different things you have so for example you don't inadvertently exceed the amount of paracetamol. Lots of things have different names even when they contain the same painkillers so look at the small print. I know when I'm in pain I just want it to go away so it's hard to be sensible, but do try.

in reply to helixhelix

Thanks Polly for your great advice it makes perfect sense as normal! My husband has put the pain relief gel over my shoulder joint and down the arm also so fingers crossed it will help! Thank god for this site and the people on it :) xx

Thank you..... You already know what a great support you are to me...... I'm using my dog shaped wheat-pack to help it. Xxx

Luthien66 profile image
Luthien66

So sorry Amanda to hear your suffering like this. I can empathise because I have a similar problem but in my right shoulder. I do know that my GP has told me in the past I can combine anti-inflammatory's with paracetamol if needed but as the others have said probably best to get medical advice.

Hope rheumy helpline gets back to you real quick. Big hugs xxxxx

in reply to Luthien66

Thank you Luthien, your reply means a lot :). Hope you're ok and that your cooker has arrived! Xxx

Luthien66 profile image
Luthien66 in reply to

No cooker yet...boo hoo!! Xx

sciqueen profile image
sciqueen

Hi

I know I'm flaring when I have 4/5 joints in pain simultaneously and the pain is ramped up. Like you, if I have shoulder pain it also always affect my elbow.

Hot or cold treatments might help. I invested in a hot wax bath as my hands can get so bad (although I haven't used it for a while). For me heat works not the cold treatment, also fairly warm baths at night before I go to bed. I rub arnica gel on affected joints, as it's natural you can use as many times in a day as you need, without side affects. I also find thus offer some temporary relief.

It's essential you take pain relief as well as ani flams. Experiment with gp guidance on different brands to find the most effective combination for you. Also you can get steroid injections which help to lessen the flare symptoms.

Lastly when you and your medical team find the right drug combination for "you", you'll have less flares, be able to recognise them and start taking drugs to offer you relief more quickly.

Flares are a bitch and I sympathise with you. Hang in there,

Sending cyber hugs ((((x))))

Joanne x

in reply to sciqueen

Ha ha Joanne you are so right! I guess I will get to learn the pattern of any flares I have in time. I will get some arnica gel as I prefer the natural method as much as is possible but right now would chuck anything down my throat. I'm only on Hydroxy at the mo waiting for a guided steroid jab in my hand. This is horrible at the mo but may possibly push my DAS up to qualify for the next stage of meds..... Mmm will have to see, thanks again and I hope you're doing ok x

Ronnie63 profile image
Ronnie63 in reply to

It's a bit of a double edged sword, as you say the worse it is, the higher the score, the better the meds but horrible when you're in the throws of it

Hope it starts to calm down soon and that you get some relief. Brownie point to hubby for helping you get dressed xx

in reply to Ronnie63

Thank you Ronnie, I hope the novelty doesn't wear off too quick for him though! Have a lovely holiday xx

Caza profile image
Caza in reply to

Hi Amanda, sorry to hear your in so much pain. I to have shoulder pain which runs down my arm. I have to say that & jaw pain is the worst pain I've had so can totally understand where your coming from. I to only take hydroxy, I can't take painkillers. I use the wheat pad & hot water bottles,which I know has already been suggested. I definitely blame the weather change. I was doing ok before,it doesn't help with my central heating breaking down & my husband not feeling the cold. I've got an appointment with the consultant in a cple of weeks time & really not sure what to say,the thought of stronger meds really scare me but when I'm in a flare I would willingly take arsenic if I thought it would help!! Wish you better x

in reply to Caza

Thank you Caza for your advice and I totally get that you would happily take arsenic if it helped?! Good luck at your appointment and understand how you feel about being scared about stronger meds also. Hope your heating get fixed soon but looks like we are in for a warmer spell at the weekend :) x

Rowan profile image
Rowan

Hi

I didn't realise as many people have shoulder pain. I'm sorry that you are feeling so bad. I too have been having a terrible time with my shoulders. I can certainly sympathise with the levels of pain you are experiencing for me ice packs help especially before bed to try and calm/numb the area before sleep. Of course this only lasts a short time.

I have also had numerous steroid injections into the joints and bursa which give better relief. Perhaps ask your rhuemmy or GP if this would help?

My physio has said that pain from shoulder will go down to elbow or wrist when shoulder v inflamed.

I eventually had an operation ( sub acromial decompression) on my right shoulder which involved making more space for the tendon and bursa. ApparentlyThese tissues can also become inflamed due to RA like a joint does. I am now 6 months on still under physio who thinks it will take another 3-6 months to make full recovery. But my right shoulder is so much better. It has certainly been worth it. Now waiting to see about my left shoulder!

Hope you get some relief soon and your flare doesn't last too long.

x

in reply to Rowan

Thank you Rowan for your reply and sorry that you have problems with your shoulders. I hope things continue to improve for you and good luck with your left shoulder :) x

Hi Amanda, hope things are improving for you now? Do you have Naproxen and co-codimol or can't you take these? It seems like we are in similar boats with Hydroxy not being enough on its own. I keep waiting to be told to try it again because I had no side effects from it at least and have it in my drawer but rheumy has gone elusive on me and so I don't know what his plans are now I'm not on any drugs at all for RA.

I am not taking anything just now re pain meds either but these drugs do work for me usually - its just that my pain is much more like flu and very generalised and is not actually stopping me from moving about and in fact much worse when I'm still. If I take pain meds and nsaids now for this then I'm afraid of bloating/ fluid retention and stomach probs and that they wont be as effective when i really do need them. But pre-diagnosis and MTX when I needed assistance with everything because the pain in my shoulders and wrists was just staggering, I did take NSAIDs and it improved things a lot (shame my GP forgot to put me on stomach protectors!).

Thanks for reminding me what a complete horror RA can be though and also that I do definitely have it because all these descriptions are bringing it home. I'm not there yet - just in slow motion with stiffness and flu like ache in every joint and muscle especially shoulders, wrists and feet and fingers!

Let us know how you are today please. X

in reply to

Hello Tilda, how are you today? I'm not too bad today thanks and did manage some sleep even though my hot water bottle leaked a bit and i woke up feeling slightly damp..... don't think I tightened it enough!!! I took naproxen and co- codamol yesterday, hot water bottle and a wheat dog! Also used a pain relief gel god knows if I was supposed to with the other meds but I'd gone beyond caring with that amount of pain.... still waiting for the helpline to call back!!!! I don't like Naproxen like you I only take it when I have to and up to now have had pain/ symptoms like you describe as in dull and flu-like but always there :( I like you have questioned if I do indeed have RA a but this flare has been a kick up the butt by RA...... as if to say there you go..... I'll show you what I can actually do if you don't believe me...... I don't think until now I appreciated how people like Shell cope with a constant pain like that. Thanks for your support xx

Glad you feel better. Hope it all settles down for you very soon. Tx

Hi Amanda,

Sorry to hear that the RA is biting back hard at the moment:-( I had a flare a couple of weeks ago that started with my elbows, quickly followed by wrists, hands and shoulders before going 'global'. My elbows and shoulders were hellish and had hardly any movement - leaving me making little mewing noises when ever I had to move:-( What works in this situation is very individual but I use the big guns as I'm not up to sensible conversation anyway! For me this is max dose Tramadol [100mg x4 in 24hrs], diclofenic gel [Voltarol] and whatever warm, soft and cosy clothing I can get into - my daughter said "it's a shame that you're not flexible enough 'cos what you really need is a fleecy onesie and booties"! She'll have me in the big Silver Cross pram at the bottom of the garden if I don't watch out - you know, the place babies used to be put to 'exercise their lungs'!!!

Hope this burns itself out soon,

Cece x

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