I was diagnosed just over 4 years ago and did really well on Benepali for 1-2 years. But over the last 18 months, things have gradually gone wrong with feet, ankles, fingers, wrists and shoulders. Rheumatology team say my inflammatory markers are not up, therefore the Benepali is still working.
After 8 months of reiterating that it still hurt even if the inflammatory markers were normal, I had x-rays of my feet and the rheumatology team conceded that there were bone erosions. In early January I had ultrasound scans of hands and feet. They showed inflammation around the tendons which I gather is common in RA. I now have physio and podiatry referrals a few weeks away.
In the meantime, both sides of both wrists and one shoulder have started playing up very badly. Much googling suggests it might be tenosynovitis. It's so debilitating. I wake up during the night whenever I try and move my arm. Putting any weight through my wrists, and any twisting movements, are out. I have to use both hands to even open the front door. I don't feel like doing do any of my hobbies because I'm always conscious of the pain and I'm worried about doing more damage. It aches all the time even at rest. Paracetamol and naproxen aren't helping much. Cold pack only helps while I've got the cold pack on. A couple of weeks ago a big lump came up in one wrist that was really sore. It went down a bit after a week or so, but it's still sore.
I'm waiting for call backs from rheumatology from messages I left a month ago, and most recently, a week ago. I feel like now they've given me the referrals they don't want to know. I'm feeling so down about not being able to get on with my life. And I'm really worried that this is what life is going to be like now. Maybe this is my new normal. Or maybe more and more things are going to keep going wrong, and I'll wish for this time back because at least I can still walk. I'm getting more and more scared about the progression of the disease. I'm fed up that the professionals don't seem to want to help or reassure me. I know they're busy, but I'm sure they could find 5 minutes to return a phone call within a month. I'm not suicidal or anything, but I can't see the point in life if it's always going to be this painful and this difficult. I guess I'm still grieving my pre-RA life. Thank you if you got to the end of this tome. I'm fed up and I just needed to vent.
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ChillySwimmer
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I hear you. I was ignored by my department but have now changed health authorities for Rheumatology. Nurse helpline replies on the same day!! Also struggling because of 20 months of neglect by old authority. Two things: talk to your GP see if they have any ideas (expedite letter to department?) or see a rheumy privately if you can. I’m sure others will have suggestions.
i am so sorry you feel ignored. I know exactly how you’re feeling. I would be annoying as possible and keep ringing them every day. Also, maybe raise a complaint if possible (speak to your local PALS team). Have you tried speaking to the NRAS helpline, too?
NRAS have been great throughout. This issue is now with PALS. I've been down this route before, and it worked (supportingly quickly, too). I didn't want to be the person who goes telling tales to try and get their own way, but they really haven't left me much choice. Thank you.
Sorry to hear how difficult your symptoms have become - and how difficult it is proving to get further input from your rheumatology team. I'm no medic but that sounds like active disease to me, whether inflammatory markers are raised or not. Physio and podiatry input can be really helpful but they won't treat active inflammation if that is what the problem is.
As you've been trying to call in the normal way and are getting no follow up, is there an email address you could try as an alternative contact - the nursing team, your consultant's secretary, a departmental administration team? I've personally found written communications more likely to elicit a response in situations like this.
Or is your GP supportive? If so, could it be worth discussing your symptoms with them as they may be able to request an expedited medication review for you or refer for a second opinion?
I agree with TheMarfs that the NRAS helpline and / or contacting your local PALS team could also be helpful if you still have no luck with rheumatology. But it really shouldn't be this hard. Crossing my fingers the situation improves and you get the input you need.
When my RA began when I was aged 29 my symptoms were so much like yours. Your symptoms and mine are identical. Biologicals were not available when I was young and I reacted badly to methotrexate. I was given hydrochloroquine, then lefluomide, then sulphazalazine. Sulphazalazine and naproxen helped me most but never completely. I am now in my late 70s. From your pain I think you might have RA and fibromyalgia (which I certainly had for around 25 years) . Having both doubles the pain.The fibromyalgia went after I went through the menopause. It is very painful. I took naproxen for most of this time to ease the pain and stiffness of fibromyalgia. I still have RA and 2 years ago was prescribed benepali which has lowered my inflammatory markers at last. Synovitis and inflammed tendons go hand in hand with RA. Today there is better treatment for both, so good luck. Ask about the possibility of your having fibromyalgia and if anything can help you here.
I hadn't considered it might be fibromyalgia. I've had a read about it. I'm not convinced it matches, but I'll stay open to the idea, and if I get no sense from anybody soon, I'll ask about it. Thank you.
Fibromyalgia is exceedingly painful. Stiffness especially in the night and morning and aching pain anywhere and everywhere . I found naproxen helped. I sometimes wear hand splints , sometimes a soft neck collar and sometimes a knee brace. I also use deep heat creams. Hope you get satisfactory answers and support.
My symptoms and pain are like yours. I Agree with MistyDay. It wasn’t until my RA meds started to work and inflammation markers came down that the Fibromyalgia became apparent so I too have both. M x
Splints for your hands/wrists may help your tenosynovitis, which is so painful and debilitating! I would ring rheumy team again and email PALS they can be extremely helpful and get quick results. You obviously need reviewing as your medication is clearly not working. Really feel for you, take care xx
I saw the physio in my rheumatology department this week, and she was great. She spent time listening and explaining things.
I've got some exercises for hands, wrists and shoulders, including the SARAH exercises which I've heard lots of good things about. It's only been 4 days but I can already feel a difference. And she gave me supports to wear in the daytime and referred me to somebody else who can make me custom splints for sleeping in.
I'm so sorry for you. I agree with the comments above re PALS and nras. What you're describing sounds like active disease to me, no wonder you feel down. Although I've not been lucky with the disease, I have been lucky with my NHS treatment and I'm just about to start a new drug. But it maddens me when I read stories like this... treatment and outcomes should not be a postcode lottery. You deserve to be heard, you know your body so don't give up ChillyS, get on the phone and make some noise...we're all behind you in spirit. x
I very rarely have raised inflammation levels but ultrasound shows inflammation. Markers are not always reliable!
It’s not fair but you just have to keep phoning and writing, plus go to PALS.
Like you my Enbrel (like Benepali) started to fail last April. And since then I have been struggling to find new meds that work. Trouble is that the biologics are effectively antibodies so your body can develop further antibodies to stop them working.
But don’t give up, there should be another drug to help you.
Constant pain is debilitating and demoralising. You should not have to put up with that. Is there s way that you can change your health authority? You are entitled to do that. If not, I'm afraid since COVID in particular the one who shouts the loudest is the one who's heard. Pester them , call them, write emails. Write to PALS. I hope you'll get someone who listens to you soon and get treatment to enable you to get your life back
I asked about changing to a different hospital on one of my calls to NRAS about this. They said doing that can put you at the bottom of the waiting list for the new hospital, and that while I wait, there would be no guarantee the current one would continue to prescribe the meds I'm taking. And at the end of all that, you don't even have any assurance that the new one would be any better.
I was disappointed, because I've read on here about people switching to a different hospital where they've had a much improved experience. But it's good to have all the facts and know if the possible pitfalls before you make a decision.
I'm glad NRAS could give you the wider picture. I only know of good examples. I hope you'll get good treatment soon somehow. Miracles do still happen. I know that from personal experience. All the best.
Hi, I'm not medically qualified, but you need to see a relevant specialist. It could be something like Chondrocalcinosis amongst other possible conditions. See here - medicalnewstoday.com/articl...
If paracetamol is not helping then stop taking it as long-term paracetamol can cause serious problems. A specialist might offer alternatives but safe choices are limited.
Have you approached the GB about better pain management. I got morphine patches before Christmas and they definitely helped manage the pain. Also if your taking paracetamol take them every 4-6 hrs for a few days to maintain a level in your system. Taking them just when it gets unbearable is allowing the pain to build up and it doesn't work so well then.
Lots has happened since I wrote this... and some things have still not happened.
I've had a GP appointment I'd been waiting 3 weeks for and been prescribed cocodamol. They said no to the referral to the pain clinic (suggested by rheumatology) until we had tried all other avenues, but they were thorough.
GP surgery offered me an appointment with the MSK practitioner. It was only when he introduced himself that I realised that MSK practitioner meant physiotherapist. I was too embarrassed to mention that I had a physio appointment at the hospital a couple of days later. He sent me for x-rays because he thinks I have OA in my wrists and hands. Had the x-rays today, results in a week.
Saw the physio from the rheumatology team. She gave me all the time in the world, explained things with diagrams, gave me exercises to do, provided wrist supports and I have a follow-up in a month. She also thinks I have OA in wrists and hands, so the x-rays the other physio sent me for were probably unnecessary. Oops.
What's not happened: you guessed, the appointment with the consultant. It's been almost 7 weeks now since I asked for a new date. I've left more messages on their answerphone and I emailed the consultant's assistant directly. Still no joy. I gave the answerphone one last try on Thursday morning and when I'd heard nothing after 24 hours, I sent a message to PALS. I don't know why I feel guilty about doing this. It shouldn't take 7 weeks to get an appointment date.
Thank you to everyone who has been so supportive on this thread. I appreciate all of your replies. This really is a good community.
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