Hi everybody, I hope I'm doing this correctly. I'm feeling very lost at the moment. What did any of you do for pain relief while waiting for your rhuem appt and diagnosis? I'll happilly accept recommendations if that is allowed here or maybe I missed a pinned post? I'm pre diagnosis, so no 'good drugs' 😄 yet and I've had some intolerance issues with taking Tramadol, cocodamol in the past. My GP referral from December went active 3 days ago for a rheum appt.
I spent the day trying to get hold of somebody to make an appointment when I did they said I have to wait for a letter to come through in the post! You can't book online. The NHS site says it could be 7 months to see someone.
I've self reffered for mental health help but that's end of April.
I phoned the GP this morning and I have to wait two weeks to speak to someone about pain relief and I'm honestly thinking about using my savings for a private refferal. Did any of you do this?
I plan to go to the pharmacy this afternoon to get some help and advice and all the gels, tablets that I can to ease the pain in my knuckles, wrist and elbows.
I am on my own in Herts, no one I know has heard of RA and i have elbow, wrist and finger swellings most days. I had a carpal tunnel op 2020 /bilateral Neuropathy for years, I lost my highly skilled engineering job 18 months ago because of my loss of dexterity. I can't open most jars or cans now and so shop accordingly. Everything requires typing so Google Voice typing is a lifesaver.
My new job is part time, my work colleagues are awful people and its less than ideal career wise.
I feel like running away tbh. Good job my legs still work! (at the moment😁)
I've stopped telling friends and family how bad I feel because they just cast it aside anyway.
Phew. Vent over! Again any reccomendations would be greatly appreciated.
Edit=thank you SO much everyone. I've re phoned the doc asked about prednisone and asked to escalate to be passed on to my GP that is frankly amazing. She's back from holiday Monday so I feel a bit more in control now! Xx
Update= my GP surgery contacted me this afternoon after my econsult was passed to a triage doc.I've been prescribed diclofenac ,daily use and I'm being escalated to rheum. Thank you for all your lovely comments and replies. I wouldn't of got the bravery to call without your help. Xx
Written by
Quinni
To view profiles and participate in discussions please or .
First ask if any cancellations become available then ask can you go on the list. Secondly I’d go private and see a consultant as you might then get on his NHS list and it ain’t good but heh it’s your money and your life. I had insurance and still belong to Benenden and if you have one of their hospitals near by it will be slightly cheaper but honestly it might be worth it and bearing baring in mind tests also need paying for.
But to be honest for most people sadly not all RA is controllable and the faster treated the better the outcome. We can’t give advice about pain relief although your GP can do a steroid shot or prescribe them but they only mask the disease by reducing swelling whilst not treating the condition. However for some they give great relief. Are you taking paracetamol correctly and I only found out last year with a broken leg that you don’t wait till it hurts but take on a regular basis. Don’t loose sight of the fact that there are many treatments for RA if you’ve got it and these days things are taking so much longer. Please don’t loose hope and also keep as active as you can as that really helps. And finally can you ring the NRAS helpline they I’ll have more advice and best of luck. X
Thank you so much! Yes I've asked re cancellation lists and one person on the NHS appointment line for rhuem said they don't exist. Then when I tried again another said it did but as I don't have the actual appointment they couldn't do anything!It's so daft. I didn't know about paracetamol I've always relied on high ibuprofen doses so I will try that thank you! X
Thank you , I did call this morning but I was told there were no appointments today due to lots of kids needing appointments. I may go there as its round the corner. X
in my more painful moments I went online and got a stock of diclofenac which calmed my inflammation. Along with ice packs and hot baths - it all helped .The Naproxen as prescribed by the gp was never enough.
You going if you can take it for pain Relief. I went thro amatripyline, tramadol and codeine and nothing touched it at the start but pred did. I was started on 5mg and told go up in 1mg til it kicks in and this worked for me. The RA drugs can take 13weeks to kick in so no miracles unless you are incredibly lucky.
Keep a diary of everything you are doing and what is hurting and what does not work as in time you will forget what did what and when.
Get checked for Vit d and maybe folic acid too as I was very low at the start and we are in winter mode and no sun either does not help
Work- pace rest pace and if you don’t like it look elsewhere as the stress will not help either. RA means as no one understands it you have to be proactive for your health and life!
I went private due to a useless GP, once diagnosed the consultant transferred me to his NHS list. It was by pure chance that he had clinics at my hospital. I didn't have any intention at the time to sort of jump the queue, I knew something was happening to me and I wanted to know what it was.
The problem with steroids is most consultants don't like to see a patient that's on them because it can make it harder to diagnose (I'm sorry to have to tell you this because they are wonder drugs RA wise). I watched a video that Nras put on Facebook months ago about the use of steroids in RA and the consultant did say that, I know it's the same at my hospital. I'm just saying this incase you do ask for them and then manage to get an appointment soon, they do mask the symptoms.
I was so incapacitated when RA hit me I paid for a private appointment with a Rheumatologist as I could not cope as live alone. After that appointment the consultant got me on the NHS list almost immediately. I think a few of us have done this to get seen quickly. Good luck!
I'm sorry to hear you're having problems getting the help you need.I went through ibuprofen, co codamol, tramadol, naproxen , until finally the pain got so bad I was prescribed steroids ( prednisolone I think- was quite a while ago. ) Thankfully I could time tapering off them to coincide with my first rheumatology appointment.
The rheumatologist gave me a steroid injection ( in my bum) to tide me over until the meds kicked in.
Sorry , but I can't think of anything else to add to what others have suggested, apart from echoing what Deeb said about keeping a diary about symptoms etc..I had pages of notes but it was worth it.
I hope you get some answers, and the support you need asap.
hello Quinni I feel for you some days I’m in terrible pain and I was diagnosed 15years ago . They say weather does not effect RA butter it does with me. I’m lucky I have a very caring Husband . My GP told me not too go private because it’s a condition that never goes away and you will have a job too get back on national health when you can’t pay any more . Thinking of you darling. Hope this helps a little
Hi Quinni. There isn't a right or wrong way to post on here as long as it isn't offensive or confrontational. Things are so different now than when I was diagnosed almost 21 years ago. I did go privately for my first consultation with a Rheumatologist. I saw him 2 weeks after my referral which was brilliant but sadly I suspect that wouldn't be the same now. I was in a lot of pain and had a general steroid injection. Two weeks later I was dancing at my nephew's wedding. I then continued my appointments on the NHS. I used heat wherever and whenever I could but only took paracetamol before starting on methotrexate and hydroxychloroquine. I wish you all the best.
All the above replies have given you excellent suggestions. I would also suggest taking pictures of any swollen/reddened/hot joints, especially if you actually do start on Prednisone before your Rheumy appointment, as pictures are objective irrefutable evidence of your joint issues, whereas a written description may be subjective. It's unfortunate, but sometimes we have to "prove" our disease in order to get treatment, and more so being a female patient, sadly.Good luck with your journey, take advantage of the wonderful, experienced minds on this forum.
I am so sorry you are in this position and I imagine everyone who replies will also have been when they were rediagnosis or treatment. I too like many others went private for diagnosis. Money spent on your health it the best money spent .
Anything you can do to keep inflammation down at this time (I echo steroids) is the way to go. You may find it’s quite a wait between diagnosis and treatment that really works for you so by keeping it down you can avoid some of the irreparable joint damage you will read about here.
If you can’t get diclofenac (which I also had when waiting for the good stuff) take any low dose anti inflammatory you can handle. With paracetamol. An ibuprofen an aspirin. Never stop them it will reduce your inflammation even if by a small amount that will help.
Be really strict on timings.
The gels don’t work imo when you’re not treated so don’t waste your money.
I also had a drug called Robaxin. A life saver. Not for long term use, addictive, but boy took pain away in one hit which was pure joy!
Organise yourself one of those prescription discount bulk card things trust me you will need it.
Get rid of everything that doesn’t need your energy right now. Conserve it all for you and your health.
If you can get a steroid shot then do. Fight for this on the nhs (and it will be a fight) or go privately if funds allow. It will be the relief you need and won’t interfere with your diagnosis and treatment because they wear off. These saved me!
Don’t give up it does get better! I went from not walking to riding 100 miles for arthritis research when I found the right meds
Wow, this is brilliant thank you! .I'm doing much better today, the anxiety and pain is much less, I feel more in control after speaking with the gp yesterday. I get free prescriptions down to long term thyroid so that's a worry off my mind financially. I am using something called rheumabuddy app to catalogue daily pain but the photo idea is excellent advice also. I know I'm extremely tough on myself as I fought tooth and nail to get to where I am in my field so this whole thing has thrown me. I really appreciate allllll the comments, I really do! X
I too live in Herts,and get brilliant treatment from my rheumy at chase farm hospital in Enfield as he looked after my ra for last 20 years.dr persey.He charges about£220 for initial consult,or The Rivers at Sawbridgeworth is very good for rheumy private consult.I agree with others on here that prednisone is the interim answer it works very quickly and gives great relief.I was started on 20mg for a few days at first then tapered down to 5 mg gradually,also injection into joint works immediately but is painful when given.keep us posted please.best wishes.don’t despair,there are brilliant drugs out there now,so just hold on in there!
I also went to the rivers and the consultant was great but choose wisely which NHS hospital you go to as I'm in the middle of changing to Addenbrooks for treatment which is further away for me but have been left in limbo and my consultant promised me steroids last December but nothing happened and not due an appointment until the end of May. I also heard good things about Chase farm .
Very good to know, thank you so much! I only know the Spire Bushey as I was lucky enough to have private hc through my old job for 14 years. Coming back yo the NHS has been quite the shock! I will definitely be looking at the ones I can get to. I don't drive or have anyone that can so it's definitely a research day for me 😁
Wow thank you, this is incredibly helpful! I will definitely be looking into a private rheum appt 😁I know if Chase Farm as my old paramedic friends used to work there when I was at University in herts. I really appreciate the reply, definitely makes me feel less isolated!
my son who lives in Hoddesdon where I live is now having trouble with his hands,so I asked dr persey a few weeks ago if Alex could see him privately ,although he would be under Harlow with nhs,and he said that would be fine.he sees patients privately at Kings Oak hospital on Chase Farm Hospital Site.His secretary details are on his website.You would then need to go on Nhs for treatment as the new drugs are expensive,but he knows people!! Best of luck.Worth a try if you need help fast.
He actually works at the Spire Bushey which is down the road from me! I can't thank you enough 😊, I'll be sending them an email today, many thanks again 😁😁
The forum is great place for support and things to try.Hope you get rheumy appointment soon.
I did pay to see rheumy privately to begin with as our area is so overstretched.
He was lovely man and started me on prednisolone which are steroids plus a rheumatoid dmard. Which helped so much before my NHS appointment came through.
I can only take paracetamol for pain as I'm on warfarin for one of my other conditions.
With the rheumy drugs they work reasonably well.
You'll get there hopefully soon.
Glad that things are in hand. I was going to suggest paracetamol, piroxicam gel, deep heat and central heating. Getting some Mental Health support is also very useful, so I’m pleased to hear you will be starting with that soon. I am significantly worse when I am stressed. Maybe also ask for some fluoxetine (SSRI) in the short term to help lift your mood a bit… Take care.
I went private for my initial diagnosis it cost £170 but it did speed up seeing the NHS people. Prior to that I was overdosing on paracetamol (not recommended) and taking top dose of ibrophen.
I found that neproxen really helped me when I was waiting for a rheum appointment make sure they also prescribe a stomach guard as it can be hard on the stomach and take it with food. it is a none steroidal anti inflammatory med you only need to take it twice a day. See if your doctor can prescribe it for you but be aware that it is hard on the kidneys as well but it worked well for me. Good luck
Thank you! Unfortunately naproxen doesnt work on me and I've tried it several times. I have had severe reactions to Tramadol, aspirin even codeine which is absolutely rubbish. My very good Gp says I'm an " unusual one" and I'd very much rather not be! I've been prescribed a stomach guard with the diclofenac I picked up yesterday so I'm hoping it works.
Hi. I’m so sorry that you are in so much pain but just know that once you get in the right medication from your Rheumatologist that the pain will improve. Meanwhile, just please make sure you are taking a stomach tablet as naproxen and drugs similar can have a bad effect on your tummy. I would also ask your GP to prescribe some steroids to help until you get to see your rheumatologist. Wishing you well and hope you get an appointment very soon!
Hello,I can empathise with your problems, l had similar before my diagnosis15 yrs ago. My gp insisted l had osteoarthritis and for several years and refused to refer me to the RA dept so despite being a senior nurse in the NHS l asked him to refer me privately which he reluctantly did . I was diagnosed immediately by her as having had it for several years by markers showing in my health records and a blood test to show inflammatory markers . I was then transferred back to her NHS list after a while as l needed infusions of biologics.This was the best money l ever spent so go for it this is expensive but health needs to come high on your list of importance.
I really feel for you. Nobody understands what it's like except us,unfortunately!One thing I had to learn when I received my RA diagnosis was patience. When, eventually you are on the right meds for you ,you will get your life back. But be prepared, it may take time. Good luck!
Hi Quinni. I doesn’t help with you being in such a volatile workplace. It escalates your stress levels that cause pain. I was the same. Maybe ask your Gp for help with something that helps with the stress. I take amitriptyline 10mg at night which does help with the pain. It’s a low dose so you will be able to rest. Also I take sertraline 10mg that helped me with anxiety due to stress levels at work. Also I went back to my gp and asked them is there a Rheumatology clini that has a shorter waiting list if you’re willing to travel. My rheumatologist is 25 miles away from where I live but was worth it. I hope you find something soon. Kind regards Gail.
I’m so sorry you are in so much pain and at the very start of your RA diagnosis. I remember being very afraid when I was first diagnosed - of the drugs, the pain and the long term prognosis. This group is a great place to find help and support though!
I don’t know if anyone else has suggested this as I haven’t read all the posts, but I just wanted to offer a few everyday tips to help.
You may be unaware of this but my doctor told me you can double up your pain meds by taking paracetamol and an NSAID ( ibuprofen, naproxen, diclofenac etc ) two hours apart so that you can get a clear run of pain relief. The drugs work differently and as long as you don’t take more than the prescribed four doses of each in every 24 hours, they are safe to take. So you take the paracetamol and then the ibuprofen two hours later so that they overlap. That way you don’t get that tailing off, can’t wait for the next dose discomfort that pain killers give as you are covered by the two drugs. ( Ask your doctor or pharmacist if you’re not sure).
Some another tips are to alternate hot and cold water for your hands to reduce swelling. (I always want hot!) First thing in the morning this helps relax them. And wearing a compression support glove really helps too. They are easily available online and in chemists and are a life saver. I used to wear mine all day and at night in bed and even with a carpal tunnel splint support over the top to help! Because the finger tips are open you still have good control. Buy two pairs so they can be washed, and don’t get them too tight as you need to be able to flex your fingers.
Keep your fingers moving, - keep a little stress ball near where you sit and squeeze it while you watch tv. It helps to stop them seizing up. Another thing I keep handy is a wheat bag. Heated up this is great to wrap your hands (or feet) in and reduce the pain.
Good luck on your journey - finding the right RA drugs which work for you can take a while so I hope some of this helps. As does chatting on this group with all the folk on here - you are not alone! x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
WARNING - Grumpy woman in the house!
Wrist and arm pain!
Wrist supports
