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Hi all! I'm new to the group. I'm 47 y/o. I was diagnosed with Sero-negative RA involving multiple joints & Fibromyalgia approx 10mths ago. I also have numerous other health problems. Just to name my autoimmune diagnoses... Diabetes, osteoporosis, osteoarthritis & to complicate things more... I have no spleen either. I've tried Plaquineil but was allergic. I'm currently being treated with methotrexate, folic acid & prednisolone. I'm in constant pain as the drs haven't put me on any form of meds to help manage the pain of constant joint/bone /muscle pain as of yet. I have decreased mobility although I keep on keeping on so I don't lose what mobility I do have. I guess I'm asking advice on how to deal with the pain. Anything I can do for it besides otc anti inflammatories? Any suggestions greatly appreciated...

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Apart from pain meds i use a heated shawl or pad to help with the pain.xxxx

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I asked my pcp bout pain meds but he told me that my rheumy is the 1 that would prescribe that so I talked to my rheumy bout it & she said she doesn't prescribe pain meds but that my pcp could send me to pain management clinic. So pmc called me bout 3 wks ago for some basic info then I called them back a wk ago & they said it could still take another month to get a appt... After they receive the referral. I still don't have a appt yet. I've tried all otc pain meds, heat, cold packs, and even tens units. No relief to be found as of yet. Really makes it hard to get any rest at all

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Have you tried tiger balm,you get it from health shops/xxxxxx

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Yes ma'am. I forgot to add that I've tried that, bengay, icy hot even the "old timey" lineaments. I've even went so far as to spray WD-40 on my joints... cuz someone said that's an old tale that spraying it on the joints will help. It might help some people (I ain't saying it won't) all I can say for certain is it didn't help me. As didn't Biofreeze

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I'm gonna be taking my week #5 dose of mxt on Monday & still can't see that it's doing any good. I've been on 40mg prednisone a day for approx 7-8 months. I've been wondering if I'd do better with mtx injections... What do u think? If u don't mind me asking

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I have injections - they suit me better.

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About how long did it take for u to be able to tell it had started working? All I've read on mtx pills it takes 6-12 wks

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To be honest, I couldn't tell you if or when my meds kicked in. We're all different so can't gauge our responses to different meds. I have 20mg of mtx via injection (easy to administer) sulfasalazine and now, after some time, a biologic called Cimzia. Until the Cimzia kicked in, things didn't really improve for me. I also have etoricoxib (an anti-inflammatory) and paracetamol daily along with folic acid 4 days a week and some vits (b12 and D) Oh, plus calcium and omeprazole. It is a bit of a bind but it works for me atm. I'm still not as I was, pre diagnosis (late 2015) but my inflammation is under control - i just have to work on my fitness, flexibility and pain control now. It isntbas horrendous as it sounds lol.

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How often do u inject the mtx

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I inject once a week.

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Weird - I got thrown off!🤔 I was going to say: I inject once a week with mtx and once every 2 weeks with Cimzia.

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Ty

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Ty

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6months for it to effect the level of wrist & hand swelling! Pain still an issue as is mobility. M x

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Ty. I've been on mtx pill form 6wks now with no positive effects but plenty of net effects. Have hair loss, skin problems, decreased appetite, nausea, wt loss & sore mouth.just wonder how long til the neg effexrs will go away ir will they get any better

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Side effects continued for 3months switched to injecting and they settled a bit. Gotta say still problematic but Ive been adding, trying and dumping other dmards Sulphasalazine hydroxyzine leflunomide too. M x

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It just seems to me like my rheumy is in no hurry to do anything to help me. I use get so frustrated with her and all the constant pain that never ends

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Feel your pain but gotta say in my limited experience there's no quick fix, we'll there hasn't been for me so far! M x

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I moved to injecting due to stomach probe and nausea- it's really helped with side effects. M x

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Naproxen helped my pain but aggravated stomach. Was switched to Celebrex by my rheumatologist. But going on biologic Enbrel along side my methotrexate helped the most. Seronegative with family history of psoriasis. I have osteoporosis and osteoarthritis too.

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Thanks for ur response. I have seronegative RA in multiple joints. My profile says psoriasis but not sure why cuz I don't have that. One of my drs are gonna have to prescribe some form of pain meds soon cuz I can't handle this much longer. I will take my 5th dose of mtx Monday and I take 40mg prednisone per day x7-8 months & I can't tell it's doing anything to help

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Read up on types of spondyloarthritis.

spondylitis.org/

I'm in the US, psoriatic arthritis is a potential diagnosis for me, but still undifferentiated after several years of treatment. Luckily, rheumatologist treats my symptoms. I have malabsorption and b12, vit d, iron, b1 deficiencies. Gut issues and celiac disease are often associated.

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Thanks for that info. I do have vit-d & calcium & B12 deficiencies so maybe I need to check into this. I also have a few gut issues too

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nass.co.uk/

Good info here too.

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Strangely, in the months before my diagnosis, my gp readily prescribed pain killers ( tramadol, morphine ) as well as anti inflammatory. It has been the same since then with the gp regulating my pain control , as opposed to rheumatology .

Marie

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Before my diagnosis I was on pain med but since it... It has been stopped and now between my gp & my rheumy it's like neither one knows which one shud give it. I don't care which Dr gives it... I just want some relief. I know it will never go away but dang... A decent night's rest wud help so much at this point

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Hi Tom Cat, it's a good job we are not animals or the Vet would put us to sleep.Sounds as if you've tried just about everything you can,I hope your appointment with the pain clinic comes through soon and you get some relief.

Regards Mike

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Thank u for ur reply and well wishes. Yea I'm pretty sure if I was an animal I'd have been put down many yrs ago... Lol

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But I'm bout to a point that I think that if I was an animal... Being put down wud be more humane treatment than the way these drs expect me to spend the rest of my life. I just have to look at it as... We'll at least the pain let's me no I'm still alive

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Hi,

Sorry to hear of your pain, but glad you have seen a rheumy now.

I found the Methotrexate started to help after about 3 months - nothing is ever quick in relation to RA meds. Hang on in there, I was diagnosed nearly 4 years ago and live a really good life now MXT has given me back some semblance of normality. I used to be in so much pain and unable to do very much. I have enjoyed long spells of remission on MXT.

Naproxen as pain relief / anti inflammatory did help, but you need a tummy protector like Omeprazole alongside to reduce tummy probs.

I also had a steroid injection which helped for about 6 -8 weeks (have had a couple of those).

I take co-codamol at night to help with pain relief - sleep is my biggest issue now. Can't lay for long without it hurting.

Keep positive, you are going in the right direction but it's a slow journey in a winding road.

X

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I've never heard of co-codamol. Can u help me understand what that is? night time is also my worst time for the same reason

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Hi Meany,

Co codamol is a mix of codeine and paracetamol - some mixes of it are available over the counter, stronger versions are available on prescription.

Here's a link explaining more

en.m.wikipedia.org/wiki/Co-...

I take 15/500 at the moment, but have been on 30/500 in the past. I try and limit my use of it as I understand it can be addictive.

I know others have been prescribed muscle relaxants to help with sleep too.

It makes me feel spaced out and weird (weirder than normal!) so I don't take it if I'm driving anywhere 😮 or during the day as I'm at work and can't risk drowsiness.

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Ty for the info. I can only take my relaxer at night when I work cuz I was driving heavy equipment but I was let go a wk ago even with family medical leave so I don't have to worry bout that right now

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Hi there

I have finally got some oral morphine (Oramorph) for when the pain is unbearable. Previously I took Tramadol, which barely seemed to touch it. I also take Paracetamol at the same time. I've learned I have to take the drugs before the pain gets really bad for them to have any chance of working.

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I'm allergic to morphine but have never heard of the para drug. What is that? I wish I could get Dr to give me anything to help. It's nearly impossible to sleep with unbearable pain not to mention constant fatigue anyway

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Paracetamol is an over-the-counter (in the UK) mild pain-killer that works well in combination with other drugs.

I think you need to make clear that it's essential you have some pain relief. I asked the GP for sleeping tablets to knock me out as I just couldn't bear the severe pain - it was only then that I was given Oramorph.

I've never experienced such pain before RA. If I was in your shoes I'd make an urgent appointment to see a Dr and explain the severity of the situation. I asked my partner to shoot some video on my phone of me writhing around and crying with pain - just in case I needed to show the medics how bad it is.

The other thing is that your rheumatologist needs to see you at your worst, which they might not have done. Otherwise they can't tell how bad things are. Good luck!

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