Newly diagnosed Rheumatoid Arthritis experiencing very bad pain

[Yogachick2]

Hi everyone. I was diagnosed in October and I visited my Rheumatologist at the end of October. At that stage I had swellings in my fingers and the rheumatologist picked up inflammation in other joints. Started on 15mg of Methotrexate. I had no visible reaction to Methotrexate. About two weeks ago started to feel worse and started 20g course of prednisone. Over the weekend pain started suddenly in my hips for about four days before reducing. I had a rheumatologist appointment yesterday where he increased methotrexate, 5g of prednisone for a week and an anti inflammatory acorxia. Had a relaxing evening hip started up when I went to bed and hasn’t stopped. The only tests that have been carried out are blood tests which confirmed RA. Not sure how to manage pain over Christmas.

[AJCWarrior]

Hi Gemma firstly, sorry to hear you’ve been diagnosed with RA. I developed it 12 years ago after my father died suddenly. For me personally, the first few years were the most painful and I managed it with paracetamol and ibuprofen whilst the consultant trialled me on different meds. I have got an aggressive form though I’ve been told. I changed my diet massively a few years ago and removed gluten, dairy, sugar and caffeine together with processed foods. (There’s a lot of research linking autoimmune disease to a condition called Leaky Gut which I believe exists (not to say others have though)). 😊 I personally feel this has helped massively on my pain levels as it’s more the stiffness and swelling that compromise me nowadays when I flare. I take paracetamol maybe once a year if that now and that’s if I’m really bad so for me, it has improved a lot. Stress also has a huge play to part. How can you not feel stressed though when you’re battling pain and the unknown of a chronic health condition. Equally, does feeling stressed contribute to a flare of symptoms! Some consultants say not at all, others say of course. I also trained in a couple of alternative therapy techniques to help manage my symptoms and clear out some mental ‘clutter’ that had accumulated over the years. I had to give up my job as a Firefighter a couple of years after diagnosis but 10 years on I’ve still got a fire in my belly and keep training. One bit of advice is always push your consultant if you’re not happy with how you’re feeling. You have to be really vocal to not get lost in the system, and to get the right treatment plan in place that works for you and gives you your quality of life back. The drugs available nowadays should in effect put you in remission. There’s lots to choose from. And don’t let them rely on your blood results to gauge how active the disease is in your body. My blood count always shows little or no inflammation, even when my joints are so badly swollen that I can’t straighten my arms, pick things up properly or walk without hobbling. Things don’t get that bad anymore though I’m pleased to say 😊 Good luck with your journey. Any questions, please ask. All the very best, Amanda x

[Yogachick2 in reply to AJCWarrior]

Thanks for the lovely message AJCWarrior. There’s an awful lot to take in and I am already worried about my ability to work. I’m in so much pain today that I couldn’t imagine working in an office - I’m working from home at the moment. It’s night times I find the most difficult and then it’s a vicious circle when you can’t sleep. Did you have any problems with sleep disturbance and any tips

[AJCWarrior in reply to Yogachick2]

Hi Gemma, I’ve never really had any issues with sleep with the exception of when my hands were bad and I’d wake up in the night trying to find a cool spot under a pillow as they felt like they were on fire! As I’m training a lot and get a lot of post workout muscle soreness, I do take a vitamin called ZMA (zinc, magnesium and B6) which helps the muscles relax (I take an hour before bed). Do some of your own research as obviously I’m not a qualified doctor. There’s also 5-HTP which is meant to be another great natural sleep aid (some people find it useful for naturally treating depression and anxiety ( not saying you’ve got that by the way)). Keep firing over any questions as I was pretty isolated for support which is why I dedicated my life to finding ways to manage this condition holistically as much as possible 😊

[pansies7 in reply to Yogachick2]

Hi Gemma, you are getting great suggestions here! I wanted to share that diet changes made a HUGE difference in the quality of my sleep. AJCWarrior mentioned Leaky Gut above, digestive disorders are common in people diagnosed with RD, which can result in a lot of food sensitivities, reactions, allergies, etc. I have Celiac's and have been treating SIBO, my diet is very limited, but totally worth it because eliminating all of my food triggers resulted in the highest quality of sleep that I have had as an adult. I have also enjoyed a big reduction in anxiety, and am far more calm, which I am endlessly thankful for. In my personal experience I felt the positive effect of eliminating a certain category of foods from my diet almost immediately, there was no need to doubt or wonder as it was very obvious. I hope a good night's sleep is just around the corner for you!

[helixhelix]

Are you sure the hip pain is due to the RA? After 10 years of RA I can really tell the difference between RA pain, arthritis pain and plain old muscle pain or even things like bursitis. I have to stretch my hip flexor muscles daily or get hip pain. Have you become less active since diagnosis? That might not help either as we need to keep moving.

Arcoxia can take 3 or 4 days to really make a difference, and if you started MTX at end of October it should be kicking in soon. So stay hopeful that it will start to get under control.

[Yogachick2 in reply to helixhelix]

Thanks helixhelix. Luckily I have no movement issues at the moment so I have been able to keep moving - yoga, walking and cycling. All in moderation. Yes I think the hip pain is RA related as it’s deep and on both hips. I didn’t know that arcoxia will take a few days to kick in. I will tray and persevere until after Christmas and see what I’m like next week.

[helixhelix in reply to Yogachick2]

Deep and on both hips could also mean it’s linked to the psoas muscle.....just saying 🙂. Try to get a referral to physio, which is always useful if you have RA anyway!

Some get instant relief from Arcoxia, for me it take a couple of days.

[medway-lady in reply to Yogachick2]

I had incredible hip pain last year and my RA is well controlled I was admitted to the local A&e as might have had spontaneous hip fracture. Then my back felt wet and it was the Shingles rash erupting. So it may well not be RA related and I'd suggest deep heat and regular paracetamol and an alternating hot and then cold pain bags for at least 20 minutes a couple of times a day. Whatever you do don't stop moving as it'll make it worse. I hope it feels better soon.

[Ali_H]

hi Gemma,Sorry you’ve joined this particular cruise ship... the passengers are well informed though and we occasionally jump ship and swim in pain-free, clear waters just for the hell of it!!!

Some thoughts tips: is how you’re lying in bed exasperating the hip -try on your back with a pillow under your knees or if your a side sleeper put a pillow between your knees which might help.

Ask for a physio referral... it’s obviously going to be hard to get a face to face appointment but you may get a video link one which could be informative.... the sooner your on the waiting list the better. The same with podiatrist - get a referral ASAP as insoles may be the answer. The podiatrist will take a look and refer onto orthotics who will provide the insoles - ask now and get on the list! Keeping moving is important so some gentle hip range of motion exercises would be good but not if they cause undue pain or make it worse.

Meditation has helped me cope with a lot of this RA stuff - the Smiling Mind app/webpage is a good place to start - no adverts and free.

Drink loads of water and try to chill if life allows it!!

All the best

Ali

[Summerrain14]

Welcome to this lovely forum Gemma. Sorry you have had to join us though.

Are you on any painkillers as well as your MTX and anti inflammatory medication. It all takes time to work which is so hard when you are in pain. I take cocodamol too. I am currently on MTX had it increased to 20mg a month ago alongside Sulphasalzine, naproxen and prednisolone. I am having to pause my MTX for the time being until I have an extensive liver scan. So disappointing as just getting the 20mg of MTX into my system. It would be worth a call to GP and or pharmacist regarding additional pain relief to see you through Christmas until you can contact your rheumy team. x

[Yogachick2]

Thanks everyone for all the support and responses. Went to the GP and he gave me stronger pain relief. I can contact him again when surgeries are open next week. Still suspect I should be on a higher dose of prednisone but maybe the arcoxia might help

[Niao]

Hi Gemma, no words if wisdom to add to those already given. I really hope you get some relief from something soon. I second the pillow suggestion from Ali-H, I would always get awful trouble with my hips and back if I don't sleep with a pillow under or between legs, it is I think in my case, as helixhelix says, a muscular problem but I can never be sure what us RA, Osteoarthritis or Fibromyalgia.

All the very best.

[sensibleshoes]

Hi gemma5. And welcome to this supportive group. I was diagnosed with RA 18 months ago and the first 6 months were the worst. Very scary, lots of pain and uncertainty about the future. I’m now on methotrexate and sulfasalazine and my RA is well controlled. I still work full time can walk a few miles and life is fairly normal. We’re all different and their are many different treatments for RA. Hope you’ve managed to get through Christmas. X

[Yogachick2]

Thanks sensibleshoes and to everyone else who replied to my post. It’s been a great help over the last few days. Hopefully the methotrexate will start working soon and I will begin to feel better. I am sure I will have lots more questions and lovely to know that this support is there for me