Hi, I have been struggling with really sore elbows and ankles(mainly) for a few months now , I have spoke to a few GPS , mainly on fone due to lock down , but to be honest they didn’t seem interested always saying it was menopause related😪
But few weeks ago I just could not cope with how I was feeling , I was crying a lot, could hardly move , so I called doctors again in tears and they agreed to see me , the GP was great asked loads of questions and examined my joint which are very inflammed, she thinks it is RA and has now after bloods has referred me to rheumatologist, it’s not really a surprise as my mum was really bad and my symptoms are so similar. Unfortunately I’ve been told it could be over 20 weeks wait .
Anyway my purpose to talk to you was just I really feel better reading all your posts as a lot of the time I think am I just imagining all this , although 6 co Codamol and 2 diydracodeine a day tells me otherwise , also my main concern is I am a self employed domestic cleaner , and have had to put that on hold just now as I just can’t do it .
Thankyou for listening to my moans but I’m sure you can relate to me .
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Goodwin69
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Welcome to our world, the good news is with medication you can return to almost normal.
Can your GP push for an urgent referral, I don’t know what COVID has done but our hospital are still seeing newly diagnosed. You can ask for steroids to tide you over if you do have to wait 20 weeks but the Rheumy would want to see you in a untreated condition to confirm diagnosis.
Have you had blood tests?
Although it is a shock to be told that you’ve got RA modern treatment is really very good so hang on in there.
Thankyou so much for replying , I’ve had bloods done and have a raised ESR so that and my pain is why she referred me , I’m also going for ultrasound for my elbow which is the most swollen though my feet/ankles hurt the most, yea I’ve read encouraging treatments so maybe won’t get back to cleaning but try something else .
So sorry to hear you are in pain, I was recently diagnosed with inflammatory arthritis and my local hospital has a clinic just for new referrals and I had to wait 4 weeks for my appointment.
I think within the NICE guidelines they suggest quicker referrals so to prevent any possible joint damage, so hopefully you won't have to wait 20 weeks x
This is still all new to me but I know this group has been absolutely brilliant in helping me, big hugs and we can do this x
I agree with what the others have said here. I wish you luck getting your appointment and treatment. You can always ask for a second opinion at a hospital of your choice.
A new referral for Rheumatoid Arthritis should not have to wait 20 weeks. It should be an urgent referral so that you can get a diagnosis and treatment quickly. Press your GP and the appointments system at the hospital for an early appointment. Ring the appointments and tell them that you will take a cancellation at short notice and give them your contact details so that you can be fitted in if there is suddenly a space, say, tomorrow, or even today (as I have had).
Definitely push for an earlier appointment. My GP put me on the "fast track" last year which should have been 2 weeks. When I hadn't heard after that time she spoke to a rheumatologist and he agreed that she could prescribe steroids to tide me over; I had an appointment a couple of weeks later. Things might be slower atm but I know that my clinic is still seeing new referrals.
It might be worth pushing the job thing as that seemed to move things along for me.
Hi Goodwin and welcome to the forum, you have come to the right place for advice. I agree with others on here to ring and push for an earlier appointment if you need to - it may not be twenty weeks but as allanah said, have a look on the NRAS website and also ring the helpline if you need to:-
Hi Goodwin, welcome to this lovely forum. I agree with everyone else’s advice. Do keep in touch with us and let you know how you are doing won’t you. x
Can I ask who’s suggested you could wait 20 weeks? The NICE clinical pathway for suspected inflammatory arthritis says patients should be seen by a specialist within 3 weeks. This isn’t optional advice, it’s actually quite strict guidance, but as with other clinical pathways, the reality is that the guidance can’t always be met due to service pressures and caseload. I think it took 6 weeks to get seen for me, but within that time the consultant liaised with my GP so I could at least have steroids rather than keep munching on painkillers that didn’t (couldn’t) help: regardless of what’s occurring, 20 weeks is completely unacceptable, and the National covid guidance for rheumatology says that existing pathways and service should be maintained to minimise the permanent effects of untreated autoimmune and inflammatory conditions.
Hi Charlie , yea 20 weeks was what the GP told me on Thursday , i don’t know if you guys feel like this but if I have a not too bad day I think I’m ok .... then boom next day I feel awful like it’s all starting again 😪
When my GP referred me in June 2019, I was offered a choice of 3 rheumatology appointments at 3 separate hospitals (all same Trust); they ranged between 23 - 26 MONTHS! My GP then requested an urgent referral...and the answer came back that I should telephone each of the hospitals and say I could be available at short notice (2 of the hospitals are each 1-1.5) drive. I decide to see a Consultant privately and was seen 6 days later. She has now agreed to see me in her NHS clinic. I am in the fortunate position that I could afford to pay for a couple of private appointments, it must be extremely distressing for those who cannot.
Please go back to you GP and beg for a quick referral as the others here have recommended. It is totally unreasonable to expect you to wait for 20 weeks without being properly diagnosed or getting some interim treatment. Plus the strong painkillers you are taking are addictive. Is your GP aware you are having to take those to cope with the pain? Do push for help quickly.
Thankyou for replying, yea GP prescribed pain killers at beginning of lock down , just started my 3rd antinflammitary on Friday so hope it starts to work soon.
Im so sorry to hear you are in so much pain. I think we all understand the frustration of seeing a consultant. The heat prob isnt helping either. Please dont let it get to you and invest in some heat packs that can be put in freezer too. That should help little. Im on cocodamol and feel like a zombie most days as biologic not working. Sounds silly but rest up ad much as possible. Hope this gets easy tp manage over time xx
I too had to wait awhile for my first appointment so in the mean time I had steroid injection in my knee and shoulder that the hospital instructed the gp to do as that too was a 3 week wait to be administered at the hospital, which worked really well with the pain, and made waiting for the appointment less traumatic.
After being diagnosed I learnt to be more pushy and firm when it came to appointments and getting the ball rolling on medical issues, which is not naturally me. This condition does certainly change you in different ways.
Read loads and become your own expert which we have all become lol.
I too changed careers which is one of the best moves I made.
Hi, thankyou for replying, your right some great advice here. I’m happy your career change worked for you , do you mind me asking how long you were off your work , I haven’t been able to do my job for 4 weeks ( tried to go back a couple of times) and can’t see me being able to anytime soon 😪
I was off work for about five weeks until I had the injections then I felt able to go back event though I was still in pain and had bad fatigue, but I had a sit down office type job so it was easier, I can't imagine doing a physical type job like yours, I went back with a knee brace and wrist supports and on crutches I did look a sight.
Hi there, I hate that you are in this predicament. I've been in the medical field all my life and thought I had a good grip on the overall body conditions.
But along came RA (diagnosed almost 4 yrs ago at 47 years old). I didn't know Jack about our immune system.
With too many issues to begin with besides it all began years ago with my feet.
After procrastinating my annual physical I finally had to go find out what was causing the extreme pain in my hands and on prior occasion my shoulders and elbows (I remember describing that as feeling like I had swords in my shoulders weird!). The first 2 times this extreme pain petered out in about 5 days. But after ap. 10 days of it I couldn't handle it. I had told my GP I wanted RA test which he ordered. To my surprise he called me after hours on a Friday night. My 2 levels tested ESR CRP indicated it was severe. One wouldn't even register it was so high. (Nice way to start a weekend huh?) Luckily for me he had already referred me to a Rheumatologist with an urgent appointment at 8:30 that coming Monday. Pretty much took my breath away. Scared the living daylights out of me as well. I had too many issues to list beginning with what I had always thought was "arthritis" in my very flat feet.
***Note: if and when you are officially diagnosed with RA save yourself the it's "only arthritis in older people" fight your friends and probably family (especially strangers)will be assuming. Just say that you have an autoimmune disease. Otherwise they may think and/or say things about how you don't appear sick or it's just bones wearing out. This will eventually piss you off to no end!*******
I have been extremely lucky to have had excellent physicians.
I've now been on opposite sides of the doctor/patient relationship. I always insisted that the hospitalized patients I encountered know what was going on with their health. It blew me away at the number of people just listen to whatever the doctor said but didn't really understand what they were saying. Literally didn't know what they're being treated for or about medications. Not to be demeaning, they wouldn't know what questions to ask if they had the balls to interrupt the "white coated one" 🤔😳
**It truly amazes me how someone (aka my sister) goes to the doctor with a respiratory issue, was told it was bronchitis, gets 2 shots and was already feeling better. I asked what kind of shots did she get? Didn't know what it was. They didn't tell her and she didn't ask. Baaaa! WRONG ANSWER That sounded my alarm and my voice into the blunt interrogation of WHY would any sane person have a stranger inject you with something you have NO idea what it is?
Sorry I got off topic I don't get out much so if I begin my response it will end up a bedtime story by the time I shut up. And I am not or do not appear that I'm questioning your intelligence. I just hope to present my past life's realities versus whatever I am doing now. 😬
Back to that Friday night when my doctor called. Severe Rheumatoid arthritis. Severe? I didn't know much about rheumatology. Not one thing really. Took me down a few notches to say the least.
So I began doing some research and damn! The immune system is... well I don't know because IT doesn't know either. It's tricky and depending on what MOOD it's in determines your body's going to do. Short term or long term. I have had so many weird symptoms that would have made most people laugh hysterically. Seriously.
To do from now on if in fact you are officially diagnosed. Go back to school not literally but begin by learning about RA itself generally until you find out. But prepare for leaping into all the fine print later
Get ALL Lab results and learn what they indicate.
1. Get seen ASAP. Joint damage doesn't "get better" and your livelihood needs as little as you can get. This is YOU we're talking about. A lot of damage can happen while waiting and suffering. There's no going back after that. You and your family depends on your health. REMEMBER that you are a customer. They work for me and you!
2. Did your GP refer you to a specific doctor or maybe in a grouped practice of Rheumatologists?? Find out.
3. Call other offices seeing if they are accepting new patients. If they are you can then ask your GP for a referral to a physician who can see you soon. They do it all the time. Won't think a thing about it. Of course check reviews but you're in a hurry right now.
THINK of It like this: If you don't find what you want at your usual grocery store, go to a different store and see if they have it. You're the customer and only you can advocate for yourself!
There's no one definitive test for RA. I balked when another sister said that she was diagnosed with inflammatory osteoarthritis. I personally don't see much of a difference or if there is a difference. RA involves synovial fluid, antigens, antibodies, lymphocytes, T-cells, interleukins, and TNFs tumor necrosing factor. Then joints. Not simply bone. Synovial fluid is the lube job that keep them working. Just like oil in the car, if you go without it its going to tear up your engine. Identical to joints. No synovial fluid results with bone on bone rubbing. Imagine that in your head.
Okay 👌 I am done. I apologize for writing so much. After being cooped up I can try to think its like journaling.
Thanks so much for your advice , all I know is my GP referred me to rheumatologist at Forth Valley , I called them today and left a message to say I’m available for any cancellations 🤞
Where i life its a 2 year waiting list to see a rheumatologist. Disgrace! My gp put a referal in as urgent and it still took 9 months. When i first saw my rhematologist, i said i was glad to finally see him , and he was quite rude. He said youve only been waiting 9 months, id say your quite lucky. From there on in i havnt had a good rapour with him. He doesnt listen to how you feel or look at photos (cause you can guarantee theyll be no swelling the day of your appointment) lol. He just felt some of my joints and started me on methotrexate. No input to the condition or advise given. I actually read the report he sent to gp and it said no sign of arthritis but will start methotrexate!! I had been in agony for 2 years and had the photos of swelling there for him to see. But he wasnt interested. Finally after my 3rd appointment he said he was treating me for psoriatic arthritis. My point is, when you get your appointment, make sure the consultant listens to you. Xx
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