I've been lurking for a while as my symptoms resonated with many people on here and, having been referred by my less-than-great GP to see a rheumatologist, I have finally made an account.
I have had pain in wrists for a long time, but summer 2021 it started to get worse, with flare ups lasting for maybe 2 weeks ish at a time and then it getting better (though still stiff, weak and uncomfortable) for a while.
First GP appointment early Oct 21, had blood tests and X ray done (not during a flare up). Blood test came back with raised C reactive protein and abnormal ESR and lymphocyte levels (normal anti-CCP). Due to my GP surgery not picking up the phone, I had to wait until Jan 22 for these results.
On the call with GP to get these results he said he would seek a rheumatologist's advice. Rheumy said she would book me in for a visit. After much nagging and calling, earliest appointment is late May (and lady on phone seemed to think that was a steal).
I am in agony and I have deteriorated considerably even since January. What had been wrist pain and all around fatigue is now constant agony in my wrists and knuckles/finger joints to the point where I can't type/ write/ do anything most mornings and the pain keeps me awake. I am unable to do my university work and I would be devastated to have to drop out now (I'm meant to graduate in June).
I begged my GP for something and they have prescribed a low dose of naxopren, which I am taking. I am also taking OTC paracetamol every day at the moment because it's unbearable.
I worry that if more blood tests were done now, results would be worse, and I am concerned that I am getting worse quickly. I feel like I will have lost all use of my hands until May. I certainly don't want it to be RA and am very open to the fact that it quite likely isn't, but I do think that it's something.
Does anybody have any advice?
Thanks for reading all of that! Hope all are doing well
Emily x
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emilycc123
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Hi Emily and welcome. I'm sorry to hear what you have been going through and can quite understand how you're feeling, May is a long time to wait whilst you're feeling so bad. Have you tried calling the NRAS Helpline? They can give you valuable advice on what you can do in the meantime. Good luck and I hope you get some relief.
Thanks very much. I haven't but I will try that! GP this morning essentially said that I should go private because it would be bad for me to wait until May but there's nothing he can do to speed it up.Thanks again for the advice!
I'm just wondering if it would be worth asking the appointments department if they have a cancellation list and if so, would they put you on it - you never know!
Thanks! Shockingly the May appointment was me sneaking in early on a cancellation! My plan is (if the private route doesn't work out) to keep checking in and asking for earlier cancellations. So exhausting and stressful!
Yes, I can imagine but I'm wondering if it would be worth asking your GP (or rheumy nurse) for a steroid injection in the meantime to help with the pain?
That’s a good idea - I will nag the GP. He said all he can give me is naxopren until I see someone but I might ask another GP at the surgery & see if they can do anything…
I am so sorry to read your awful story. Obviously I do not know your circumstances. I was myself was in dire straights when diagnosed via a blood test and told it was I think 8 to 12 weeks to get an appointment. I had a private appointment within 2 days and started in treatment immediately.I would highly recommend to beg, borrow the money to enable you to see a consultant very quickly. Good luck
Thank you very much. I am so fortunate to have private insurance and I have an appointment in 10 days. Even that feels like an age but I am so grateful for it. Sorry to hear your story and thank you for the well wishes
I agree, NRAS Helpline is excellent. Give it a go Emily. When I eventually plucked up the courage to call them, my only regret was that I hadn’t done it sooner! X
Welcome Emily, I’m sorry to hear your story. Have you asked if the clinic has a cancellation list so you could get a short notice appointment? Keep talking to us here for support in the meantime.
Thanks very much for your words of support! I’ll keep looking for cancellations! X
Frustrating. I also struggled to get a quick appointment for different reasons. I went private to get a diagnosis - cost £200 - and then used this to push my GP to get me an emergency appointment with an NHS rheumatologist.
Thanks for the headsup. I mercifully have access to my test results (I was the one who spotted things were out of whack - my GP had previously said all were fine and to take paracetamol!). So will have access to those. I'll call my insurance company and check out Top Doctors. Thanks for the advice!
Oh Emily so sorry to read this, Rheumatology can be SO slow, this seems like an eternity when you are in pain.
If May is the absolute best the NHS can offer I would (if funds allow) go private. Just to be aware some Rheumatologists want to see patients who haven't had steroids etc to see the full extent of their possible disease (this seems quite cruel when you really need some relief but the wait is so long) so I would look into private consolidation, I know my initial wait was 6 weeks to see a consultant and I was going out of my mind in pain and discomfort.
I know this won't be a big help but a heat pad took the edge off things for me, can buy small ones that plug in and get immediate heat from or good old hot water bottle. I honestly wanted to throttle someone when they suggested this when I was properly bad so I'll duck xx
Thank you very much for your kind words. I am looking into private at the mo! Thanks for the heads up, I will be careful when taking anything before my NHS appointment but I really really need relief. Would amputate my hands before feel like this until May!
I have found relief with heat pads and occasionally frozen peas so I won't throttle you (but I will if the GP tries to fob me off with that tomorrow).
Hiya Emily, welcome. I'm afraid your experience is more common than it should be, & certainly a longer wait than the guidelines recommend. That said whilst not ideal I have needed to go private (for another condition) & it really did speed things along so if it is possible I'd certainly be looking for a Rheumatologist, one who also takes NHS clinics, so you can transfer without issue. It might be an idea to ask your GP if he can recommend one.
Don't concern yourself about meds potentially giving skewed results on imaging, bloods or examination. I was diagnosed very promptly following my GP recognising what I had, the stars were aligned because she was a GP with a Special Interest in Rheumatology. Once the bloods confirmed she prescribed pain relief & an NSAID, much the same as you're relying on. She asked me to stop them a couple of days prior to my diagnostic appointment so I’d oooh & ouch in all the right places & so the most appropriate meds & doses were prescribed. It was worth the few days of pain as it was clear on the imaging, re-done bloods & examination & I left with a seropositive diagnosis, a DMARD, a course of oral steroids & 2 NSAIDS, one to take daily & another if I thought it was needed.
I know it seems an age when you're in pain, & it is, but you're a good way there, one final push & you'll receive your diagnosis & start treatment. Try not to fight the fatigue, you won't win! Try the RICE method (Rest, Ice, Compression, Elevation). NRAS also do a New2RA & other appropriate publications here nras.org.uk/resource/diagno...
If there's anything else we can help with just ask, no question too silly, we’ve all been where you are. 😊
This is super duper helpful. Thank you so much. I will defo look for a rheumatologist who is NHS and private if poss. I'm probably moving areas in the summer (graduating from uni and getting married) so would be really nice to have a diagnosis before then so I can take it with me.
I am so grateful for the responses on here. Feeling a little less overwhelmed and upset/ frustrated and encouraged to keep fighting this uphill battle. You have given me so much hope that this can get sorted eventually!
Exciting times ahead! It would be ideal if you had your diagnosis by the summer. We'll all be here to do what we can remotely, so keep in contact & I wish you all the very best going forward.
If you could manage it……try to see a rheumatologist privately…the sooner you have a diagnosis…..the sooner you will get treatment.Sadly the lady on the phone was right…. to only wait until May is considered a quick appointment in Rheumatology terms I’m afraid.
As you are a student …..is there any chance your parents might help out ?
You are right to think early diagnosis is the key to getting RA under control.
Thanks for your reply. Yes, I was just surprised it's such a long wait. Thankfully I'm covered by my parents' private health insurance so I'm hopeful that will help me be seen earlier and I can transfer. I think worse than waiting until May for diagnosis would be waiting until May to be told it isn't RA and to go back to the GP and start from scratch again. Thanks for your input and best wishes!
Get on the phone NOW…… a lot of consultant have been sidetracked to Covid duty ….so you might even have to wait a month or so for a private appointment…...so skates on Emily!
I'm so sorry. It's such a terrible situation for everyone but especially the newly diagnosed and those still waiting.
If your naproxen dose isn't working for you, you should ask for more. You should be able to take up to 1.5g a day as long as you take a PPI to protect your stomach. But I'd come off the anti inflammatories before your rheumatology appointment if you can bear it.
Thank you very much. Already on 1g so will see if that can be upped (only been on it a week so will give some time). I am taking something for my stomach! Thank you for the advice, I will certainly try to come off the anti-inflams!
Hi EmilyGo back to your GP for better pain immediate management but
I would echo the advice you’ve had already about seeking a private consultation.
My GP originally referred me to an NHS consultant who was based 18 miles away in a hospital that fell within my NHS catchment area. I didn’t like the consultants dismissive manner so decided to look on line for myself. Most of them will have professional biogs available for you to read.
One caught my eye for a consultant based at a hospital only 3 miles from where I live (that’s a life saver when your struggling to drive thanks to RA), he was involved in researching new treatments, ran drug trials and worked both privately and NHS. Sounded like my man.
I asked my GP for an NHS referral to him and he said 8-12 weeks. I phoned the private hospital where he operates part time about a private consultation and they asked if the following Friday was convenient ! Saw him on the Friday and spent 45 mins explaining my issues and he did a cursory exam, gave me a steroid shot and then asked me to attend his NHS hospital the following week for scans and more tests. He said he would prefer to treat me ongoing as an NHS patient because his facilities at the NHS hospital were better than the private facility could offer. Never regretted this move. The reality is I now rarely get to see him because he’s so busy, but that’s fine because he has a good team under him who take care of us.
This was 3 years ago and times are different now but don’t give up, take some control, it’s empowering and that makes a huge difference. Wishing you the very best of luck. xx
Thank you so much. This is really encouraging. I will defo look out for a private rheumy that does NHS too. The GP sent off a referral to a private hospital this morning so will check out their consultants. I am finding the whole experience, but you're right about taking some control of my health and being empowered by that. Thanks very much xx
When I started with RA it was a slow build up, and it took a long time to see a rheumatologist. My GP at the time was very helpful, and I seem to remember being prescribed naproxen with omeprazole, and during one bad bout he prescribed Zapain ( 30/500mg codeine phosphate/ paracetamol) which certainly took the edge off the pain. I also remember having a whole body steroid injection ( can’t remember who did it ) and that really helped. As other people have commented heat pads help a lot ( mini electric blanket).
I hope that you get your RA sorted, you seem quite a busy person especially finishing a degree, but rest is really needed, with RA it’s very easy to become fatigued.
Thanks Chris. It's helpful to know that there are options like Zapain and steriod injections out there. I will invest in some heat pad solutions and see if they give any relief. I have found ice packs helpful when my wrists are hot and sore so I'm hopeful!Realising that I will have to rest because my body just cannot keep up anymore is tough when I am so young and only a few months ago I was training for a half marathon etc but you're right!
Hi Emily. I am sorry you are going through this. I am afraid that times have changed the way we access medical care. The waiting times for everything are longer than usual and you will be left unless you ring until someone takes notice. I don't like saying this but I agree that, if you can afford to, you should go privately to a Rheumatologist. It is the only way you will be seen quickly enough. It is so important that you are diagnosed and given medication asap. I don't agree with private medicine, in principle, it should be the same for everyone and going privately just means that people who can't afford get pushed further back in the queue but for this I think you should. Regarding RA, any damage that is done can't be undone so speed is necessary. Once you have had your initial consultation and assessment you can be treated on the NHS. I wish you all the best.
Hi Sheila,Thanks for your encouragement. I do feel slightly guilty about going private as I completely agree with you re health equality for all regardless of money. Hoping that if I go private I'm taking up less of the NHS's time and somebody else can have my cancelled appointment. I don't know!
I think lasting damage to my joints while waiting for an appointment is the thing that is scaring me most. Thank you again for your kind words.
If you have pain AND Swelling in your hands, I would try OTC ibuprofen rather than paracetamol as that is an anti inflammatory. You can also try heat and cold treatment. So for example, if your hands are swollen try cold treatment as it reduces swelling. If they are painful try heat as it soothes the pain. So ice packs and hot water bottles can be useful, or a gel pack you can cool in the fridge or heat in the microwave. Just remember not to use it for too long at a time.
Thanks for the advice! I've been told by GP to avoid ibuprofen while I'm on naxopren as that's an anti-inflam? Not sure. I will use the hot and cold treatments and see how that goes. Thanks again
Hi emilycc123. I know how frustrated and in pain you are. My story started November 2020 with pain and cramp across my shoulders and down each side of my back my ribs feeling tender and muscle cramping across my back neck and throat. when i finally managed to see a GP in December 2020 he referred me to a physio which I had to wait a few months to see. I was in total agony crying with the pain the doctor refused so most of last year i spent crying everyday as pain was sometimes so bad i felt like i couldn't breathe spent days crying with a hot water bottle which had some relief. I wrote stinking letter to my doctors for way I was treated last summer so they referred me to see a rheumatologist who I had to wait months to see. finally saw him beginning of January 2022. By this time had pain and redness in my fingers on both hands with a few small red lumps. He examined me in the presence of a nurse and said you havnt got RA, he then asked me if i had ever had psoriasis i said yes years ago but it cleared and was free for 30 years he gave me a lot of blood tests including CRP and ESR and ordered me an MRI of my back to see any damage the inflammation may be causing he gave me a patient information booklet for Psoriatic arthritis to read, this can cause pain and swelling but doesnt always have to have the skin patches can just be swelling in the joints and some people have in just the hands or knees or feet. I am still awaiting MRI but have now been given an telephone consultation for June so by that time MRI results will provide the answer. So by June I will have been suffering over a year and a half. There are a lot of problems that can cause our symptoms. Does anyone or yourself in the family suffer with psoriasis. With many people it affects just the hands.
Hi Bookworm,I am so sorry for what you've been through. That is really tough and I hope you get the help you need asap. I hadn't considered psoriatic arthritis but will definitely look into it. I have never had psoriasis but I don't know about my family. I'll ask around. Thanks for your advice and hoping you feel better soon x
Thanks emilycc123 apparently Kim Kardasian had a problem wirh painful stiff hands so bad she couldn't hold anything was diagnosed with psoriatic arthritis...she does however have a bit of psoriasis on her leg. It would be handy if u can ask your family in advance so that if your Rheumatologist shld ask you then you can give him some idea. I'm sorry you are having problems with your studying because of it can you inform them maybe they can be lenient with you.
Hi Emily, you definitely have my sympathy. Just a couple of minor points. Be sure that the Naproxen you are taking are enteric coated to avoid stomach damage and take with food. If you can take Ibuprofen that is more anti inflammatory than Paracetamol. Good luck!
Hi Shonkie,Thank you very much. I am taking something alongside naxopren to protect stomach and am taking the naxopren itself just after eating. I will ask GP about ibuprofen. I was originally told not to, as naxopren is already an anti-inflam? But quite a few comments on here have suggested it'd be ok to take the 2 together. Thanks again!
Hi Emily,Having to wait till May does seem wrong. Most rheumatology depts have developed early arthritis clinics where people with symptoms which sound like inflammatory arthritis get seen urgently i.e. within a couple of weeks. To get to one of these clinics you have to have certain symptoms and signs ....things like bad morning stiffness, joint swelling, bad stiffness after sitting etc.
Perhaps your GP’s referral letter didn’t mention anything which would have made the rheumatology dept think that you needed an urgent appt. You could ask your GP if he referred you to the early arthritis clinic. You will need quite a lot tests initially so going private could be expensive. They usually ultrasound your joints at these clinics to look for inflammation and that might not be available if you see a rheumatologist privately.
Hi Rupert,That's really helpful info, thank you. I have secured a private appointment in about 10 days and my insurance have authorised an initial consultation, any tests required and a follow up consultation for now so I'm hoping that will get the ball rolling.
I really don't want to bash the NHS, they're great and obviously very stretched at the mo, but my GPs have been impossible to get hold of, rude, dismissive etc. One or two nice ones but I am quite sure the stress of dealing with the GP surgery is making it all worse. I am, however, hoping to retain the NHS appointment I have in May or transferring to see the private rheumy as one of his NHS patients.
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