springcross3 years ago

What medication are you on?

oliviagodfreyxx in reply to springcross3 years ago

methotrexate and hydroxychloroquine

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springcross in reply to oliviagodfreyxx3 years ago

Have you rung your Rheumy department and told them what is going on. If not, it may be worth it as they may suggest you having a steroid injection to calm it down.

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oliviagodfreyxx in reply to springcross3 years ago

no, i haven’t wanted to bother them, if it gets any worse i’ll give them a call i’ve never had a steroid injection before

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springcross in reply to oliviagodfreyxx3 years ago

I know they're busy but they are also there for you too. Steroid injections don't always work and they don't work for everybody. The first one I had was like a magic potion (which is what I think you need now, especially as none of your pain killers are working), but the second one didn't do anything for me at all. What you're experiencing sounds bad enough to me to ring your Rheumy department, but at the end of the day, it's up to you. Good luck - I hope you can get it sorted. x

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oliviagodfreyxx in reply to springcross3 years ago

thankyou that’s great, i’m willing to try anything at this point it’s driving me mad!! x

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lawra3 years ago

That sounds awful. I get some comfort from an electric shoulder heat pad. Xx

oliviagodfreyxx in reply to lawra3 years ago

thankyou i’ll invest in one xx

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Brychni3 years ago

The pain I have that gets me reaching for the painkillers is in my jaw/ear/neck. Honestly I feel like a bear with a sore head and it goes down the side of my neck. I have tried Naproxen for migraines before and not been impressed, they did nothing, but I do find it helps for ear/jaw pain. It doesn't work quickly like ibuprofen or other painkillers but it does seem to last longer and I've noticed it knocks the other pains on the head too, like feet and elbow.

Hope you can get some relief.

oliviagodfreyxx in reply to Brychni3 years ago

i used to take naproxen daily but found it did nothing for me either, not sure whether it’ll be worth trying it again. the neck and jaw pain is the worst!! i’ve never know the back of my neck to flare up like it does, it’s ridiculous, especially when painkillers do the bare minimum

thankyou i will try x

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rounder3 years ago

You have my sympathy, pain at night in bed is utterly miserable. When mine shoulder was horribly painful my GP did a steroid injection into the joint. It was a bit painful going in and ached badly for 24 hours but over a period of days things settled and I was pain free for about 6 months afterwards. Maybe it's worth a phone call to your GP.

After a joint injection it's a good idea to rest the joint for 48 hours to allow the steroid to rest in the joint and do it's job.

Caza in reply to rounder3 years ago

I had the same, a steroid injection into the shoulder joint. Very painful for a couple of days & then relief. I can’t take any painkillers & cant even use painkiller cream so I needed to get it sorted. It had got so bad that I couldn’t use that arm. I saw a very young man, physio he was brilliant. He gave me lots of exercises to do daily it was so painful to start with but after 6 weeks I got my arm back almost good as new. He told me to use it or loose it as in do the exercises daily forever. Well it’s worked for me 1 year later & it really is as good as new. Don’t suffer ring a Doctor.

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oliviagodfreyxx in reply to Caza3 years ago

thankyou, it seems like the steroid injection is worth a try, the pain is horrid so i’m willing to do anything at this point 😩

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Hidden3 years ago

I find Tramadol and paracetamol are the only painkillers that relieve my pains, also a back & shoulder heat pad works wonders. Hope you feel better soon. Stay safe 🌈🌈🤗X

oliviagodfreyxx in reply to Hidden3 years ago

thankyou i’ve been taking cocodamol but it hasn’t really been doing anything for me either, i’ll have a look into tramadol xx

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Jesnaskah3 years ago

Oh my gosh...I know exactly how you feel. My onset began that way... It was a nightmare. In fact, I thought I had PMR. I didn't sleep for months bc anytime I'd lay down, after about an hour it would start in my shoulder joints and go through my arms into my fingers and it became paralyzed. That's the part of my onset that has given me PTSD....

Of course, I wasn't on anything at the time, bc we hadn't figured out what was happening yet... But initially my doctors gave me opioids. I was afraid to start taking them bc once I got relief, I knew I wouldn't be able to get off of them.

Finally, when doctors gave me Prednisone, did I finally get relief and slept for the first time in months. It was like a miracle for me. It took away so much of my pain.

Maybe instead of a shot, they can give you some steroid pills like Prednisone to help you through this horrible flare. None of us should be suffering like this if we are being " treated." Don't just try to deal with it, please call in and see if you can get help.

Wishing you quick relief!!!

oliviagodfreyxx in reply to Jesnaskah3 years ago

thankyou the injections do seem a little scary, i didn’t realise they did tablet ones ! i will ring up and ask about them, thanks for your help, take care xxx

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junik53 in reply to oliviagodfreyxx3 years ago

I am having exactly the same problem the pain just goes on and on its so debilitating I have had it foe over 2 years now but pain recently much worse ,Reumy increased MTX but only because I was due an appointment.when I told her about the arm pain she said there was no other pain killer she could give me ,(I am on co-codamol) was not offered any steroid treatment In desperation I phoned my doctor and suggested myself, the drug called PREGABALIN as I had read that it was good for nerve pain,so was put on them just at night and I have to say they do give you a good nights sleep,I was still getting pain so doc said to take one in the day ,but it makes you quite sleepy for a few hours ,still got pain but not as bad.The thing is this drug is quite a serious drug and lots of people wont go on them because they are hard to get off.and also some serious side effects ,but I had to try it as nobody else was suggesting anything else.I feel its not a fix but dont know what else to do.I have written on here before about this,you may like to check it out ,tho had similar comments to you.

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juliea7933 years ago

First I would mention to your RA team because they might suggest a blood test to see what your esr is. When I have a flare it is in my shoulders, jaw and hands. I always feel better upright than lying down. I do get relief from the heat pads. Taking Ibuprofen then paracetamol half way helps with pain relief. I do feel for you as shoulders are used in everyday living. Hope you get relief soon.

oliviagodfreyxx in reply to juliea7933 years ago

thank you, i will give them a call take care

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DeeSending3 years ago

Hello Olivia,

I have had shoulder, neck and joint pain for many years, which is now getting far more frequent as I get older. It may seen difficult to manage but I have found buying a good adjustable bed a real help to better pain management and thus better sleep. Using pillows I have found made the pain worse as they tend to slide and put your body in an unnatural position and adds further issues including back problems.

I am on prednisolone for organizing pneumonia which I have had for 3 years due to IPF and autoimmune diseases. This "steroid" has certainly helped my aches and pains as does a nightly dose of Stemetil. Talk to your specialists about these drugs. One thing for sure, we all need quality sleep for the body to cope with our various health issues. For me, it is quality rather than quantity of life.

Stay safe and take care.

Cheers Dee

oliviagodfreyxx in reply to DeeSending3 years ago

thankyou for your advice i do think i need a new bed and a better mattress for sure, i never know if being propped up helps more than being laid flat on my back, i’m going to call and see if they can sort me out with anything take care also xxx

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sjhewitt423 years ago

Hi

I have had severe neck and shoulder pain from RA for a good few years now and I, like you keep swapping pillows, pile them up so I’m propped up and move them about all night so I can empathise with you massively. The pain has really debilitated me over the years until I was put onto Cimzia. It was like a miracle for me so it’s well worth going back to your Rhumatology dept and you have to keep on pushing them and telling them how much pain you’re in. Unfortunately for me I became allergic to Cimzia and have gone through the whole list of anti tnf drugs and am now on JAK inhibitor Baricitinib. It helps a little but nowhere as much as it should. I can’t stress enough that you’re pain being controlled is so important for your quality of life so please get in touch with them. Steroid injections into joint have helped at times then others not. An electric heat pad us a good investment and gives some relief when it’s on. Also I take the anti inflammatory Etoricoxib which seems to help a little. Good luck and don’t worry about hassling the nurses/consultants because that’s what they are there for. Sarah xxx

oliviagodfreyxx in reply to sjhewitt423 years ago

thankyou for your advice unfortunately whenever i’m in pain my rheumy seems to dismiss it hence why i’m not on any strong painkillers, they always tell me to just take paracetamol which i’m sure everyone knows that isn’t strong enough for arthritis pain!! it’s been going on for a few weeks now, it’s a good job i’m not at work! i will definitely give them a call, thankyou for your help xxx

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sjhewitt42 in reply to oliviagodfreyxx3 years ago

You’re welcome. Let us know how you get on but you may have to keep badgering them until they take you seriously xxx

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Esmereld3 years ago

I don’t think rheumatoid departments are run off their feet because of the virus. You can’t hurt anyone by making a phone call.

I had two steroid injections into my shoulder. First one lasted three months. Had another one and never looked back. Got to be at least 16 years ago. They sprayed it with some freezing stuff to numb it a bit. No worse than having bloods done. Keep the joint still as possible for at least 24 hours. I can only tell you my experience. One treatment won’t necessarily work for everyone. What are the consequences of doing nothing?

oliviagodfreyxx in reply to Esmereld3 years ago

i’m willing to try anything at this point so i will look into the injections, doesn’t hurt to try them

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Rashford203 years ago

I’ve had a similar pain in my elbow and wrist. Got injections in both cleared up tremendously within hours. Bare in mind it’s relatively painful and you can feel very sick moments afterwards but it’s definitely worth it.

oliviagodfreyxx in reply to Rashford203 years ago

thankyou i will have a look into it

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Happy53 years ago

Poor you nightmare when this happens. Went through this few weeks back.

Mine was triggered by needing a tooth extraction, and not able to take my MTX injection for a couple of weeks.

After trying all you have, I had to call my RA team and ended up with steroid injection, then needing 4 week oral steroid follow up.

Three days in felt the the benefits

So maybe give your RA team a call to discuss what else you can do to relieve your painful,

wearing symptoms.

oliviagodfreyxx in reply to Happy53 years ago

thankyou a few have suggested the steroid injection so i think i’ll have a look into that x

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wishbone3 years ago

You have my sympathy. I suffered for weeks with both shoulders back when my RA was uncontrolled. I could not put any pressure on them at all and had a terrible time of it. Lying on my side was even worse than lying on my back. I'd try propping myself up to get some sleep but it never made much difference. I even bought a customised chunk of foam cut to the appropriate size.

I think a steroid injection is your best bet, but probably the real answer is to get your RA better controlled. Unfortunately I could not have a steroid injection and was having problems with meds at the time. This was about 4 years ago and although my shoulders still give me trouble, thankfully it's nowhere near as bad as that little episode.

MissMinto3 years ago

I think a chat with your rheumy Is a good idea as it does sound like it could be PMR and not just your RA. If it is PMR the only thing that will give you relief is steroids, either tablets or injection.

I don’t tolerate the tablets and it can be tricky tapering off them so I occasionally go for an injection but NOT directly into the joint, it’s a systemic shot into the bum muscle, can last several weeks if you’re lucky.

Either way, hope you get sorted soon.

linda-55023 years ago

I have the same my gp has prescrinbed gabapentolin it is the only thing that eorks and does the job good luck