I am waiting for an urgent referral to rheumatology. My GP says my anti CCP is 2777 and my RF 31. We have wasted 3 months because he thought I had Reactive Arthritis then Polymyalgia. My fear is that permanent damage has been done. I have pain (neck to fingers) obviously but the worst symptom is numbness and tingling in my feet. Hoping for some positive stories as I'm current feeling that I can 't live with this if is irreversable. I have pretty much come to terms with having a chronic illness and hope to get the pain under control with the right drugs but the feet are in another league altough not exactly painful. Also does stress make it worse as I can't get my anxiety under control today. Thank you.
Fear and Panic: I am waiting for an urgent referral to... - NRAS
Fear and Panic
Written by
Zill8
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47 Replies
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forgot to say I am on 15mg prednisolone.
... maybe your rheumatologist needs to increase the steroids, 15mg is still a relatively low dose.
I've had RA for 54 years since I was 6 years old, once you get the drugs that work for you hopefully you'll feel better about things. Don't forget at 63 everyone will have some degenerative changes.
As zen4 says below, you can have a good life with RA.
Yes, stress makes it worse, your immune system responds to stress by becoming more active.
Have you been out for a walk today? I find just a few minutes outside walking helps to calm me down, even if it hurts a lot to walk. Apologies if that sounds spartan.
My RA is severe, I am now taking two lots of pills and some injections called biologics. It is now under control and although my life is not back to where it was (I get tired easily and my joints can become painful if I put them under a lot of strain), to a large extent my life is pain free and I can do most of the things I used to. In a way being obviously badly affected can help get the treatment you need once the GP gets you the referral to rheumatology.
Hi There Sorry to hear about your fear and panic I would like to say you are unlikely to have any damage in this small amount of time but do be proactive I learnt over many years that all referrals need to be followed up Call rheumatology to check they have the referral Things sometimes go to wrong depts or hospitals or get bounced back or forgotten Its just the way it is Most times will be fine but always check Its true you should try on focus on other more positive things in your life and any exercise that you can manage is good for alleviating stress otherwise you're body is on permanent high alert
I have had RA for over 50 years and I've still had a wonderful life so dont panic It just takes time to adjust and to get things under control Hope rheumatology sees you soon
1st Don’t worry about numbers that’s all they are it’s how you feel that matters.
2nd Cronic just means long lasting like acute means sudden it doesn’t mean worse.
3rd Your GP has presumably referred you to a Consultant and it’s going to get easier when your prescribed medication.
4th It can take time to find the right medication and the NHS has a treatment pathway and you can find a lot of information on the NRAS and NHS websites but don’t overthink or believe all the horror stories that can be found via Dr Google.
5th I don’t know if stress has any impact on RA but it’s not good generally anyway.
6th Life is not over RA is treatable and for most people it is controllable with good medications that are now available to us. You will die with it but not of it ! I was diagnosed over 35 years ago and had a good career, a family and apart from a few pills a day RA had no real impact.
7th Stay positive, active and enjoy what you can do rather than mourn the stuff at the moment you might not be up to as things will improve in time.
8th Ignore negative people you have a disease that isn’t your fault, it won’t be cured by internet stories of miracle diets etc. But it is treatable.
9th Remember medications are your friends and if you have a long waiting list to see a consultant see if it’s possible to get a cancellation.
10th Don’t concentrate on the diagnosis and keep a diary for when you do see a consultant as time can alter perceptions.
In conclusion it’s a diagnosis no one wants but it’s not the end of the good times rather the beginning of the end of the bad times.
Thankyou so much. I’m generally quite a positive person it’s just this horrible numbness in my feet that getting me down. The online horror stories imply it can’t be reversed and I’m finding it difficult to cope with.
RA can't be reversed because it's auto immune but it can be treated. Has your GP tested for Anaemia as numbness can be related to vitamin D deficiency. Obviously we are not medically qualified and can only suggest what to ask for but in your situation I'd ask for a full blood count and take it from there. If your GP has already done that he must have addressed if it's RA related or something else.
Please don’t panic. Just after I was diagnosed the disease went nuts. I could hardly walk more than 40metres, cook, clean, dress myself easily and even going to the toilet was a painful nightmare. My fingers looked awful, and I had tingling all over and was permanently exhausted.
I was convinced I would be in a wheelchair within months.
But no, once we found a treatment that worked I got back to 95% normal. It was perhaps the worst year of my life as nothing with this disease is quick but no permanent damage.
Just had another bad year, but 14 years later it has been far more good years than bad years.
Thank you so much. This community has made me feel 100% more optimistic already.
a good place to look is the NRAS site as they have lots of info re RA , a fab helpline for questions or just the need to talk about RA in a comfortable zone who “get RA” !
I think it’s important not to think things will be quick at the start , wait for consultation, wait for tests they might want, wait time for medications etc etc. there is no such thing as immediate, so if you have a good GP work out what will keep you upright whether painkillers or prednisone or both and keep a journal or questions you might want to ask. If you can with first consultant take someone with you as you might get a lot of info. 🥰
I had symptoms for three months before I even went to the GP. I thought I'd partied too much, so don't worry. There are others who take much longer to get a diagnosis. Walking and swimming qre great, staying physically active is important to keep you mobile and help manage your symptoms.
RA is a long term condition and stressing about is the last thing you need.
Hopefully the rheumatologist can help with medication.
Thank you for the positivity
l had to wait 3 months to see a rheumatologist when diagnosed. I had severe pain. My left toes are distorted perhaps because of the delay but apart from that l am ok.They gave me steroid injections and Methotrexate. I am okay and on same medication for the last 21 years. A
I have inflammations sometimes but l am managing everything considering my age. l am 79.
So don’t be disheartened your pain will improve once treated.
just sharing that I was diagnosed with Adult Onset Stills Disease aged 17 in 1979 which manifests as rheumatoid arthritis and once prescribed the right medication (for that era) I went from bedbound to pretty much normal in a short time.
Over the years I’ve learnt to pace myself to avoid over doing it, always keep warm as cold is the enemy (for me), to avoid stress as it definitely makes me feel worse and that food with tannins (tea, red wine) definitely aggravates my joints.
Diagnosis is the start of getting better.
Hi It's always a shock to find out you may have RA or similar diseases it took my GP to accept it was it was not osteoarthritis and only after l had asked to be referred privately five years later. By that time l was clearly showing symptoms of an auto immune disease not wear and tear . Best money l ever spent but annoying as a Senior Nurse many of us have problems being referred so hope this referral will set you along the thevroad to an expert dealing with it and you very soon are on the right drugs to make you feel better and on the path to relieve the symptoms and the pain is relieved and you can start to lead your normal life again .
Many thanks
I’m at your stage currently with prednisone not helping with pain but I’m starting RTX infusions on 17/4 so I can’t complain, was only mentioned before Christmas about starting them after another CT scan. It’s a slow process or has been for me trying Dmards first then bio meds but I’ve probably been quicker than most as mine is different, it’s attacking my lungs. I’ve had the pain in the feet years ago, swollen and felt little walking on broken bones., I didn’t realise at the time that was RA , I just hobbled into work and got on with it, with help with pain relief and gabapentin, I’ve had the signs but negative bloods for years until I met my new rheumatologist who told me I have seronegative Ra and sjogrens and I’ve had it for years. Don’t worry, you’ll get there, I can’t wait for my infusions as everyone on here has had brilliant relief from them so hoping it helps me too. Once you see your rheumatologist things will quickly get moving.
Take care
Wendy xx
Thanks Wendy good luck
Hi Zill. You’ve had some excellent answers from others already but I just wanted to give you some reassurance on your current feet symptoms. It took me around 3 years to get to diagnosis and treatment and over that time I had many periods of time with painful and swollen feet accompanied by feelings of numbness and maddening tingling and crackling sensations. Like you, at the time I was worried that this indicated permanent damage in my feet but once I was on biologic medication and my condition became more stable over the next year or so, these symptoms reduced dramatically. They still come back periodically when I am in a flare (this last week funnily enough) but my understanding is that they are the result of swelling in the foot pressing on the nerves and so I feel less worried as I remind myself that as the swelling goes back down they should resolve again.
Thank you so much - that makes me feel a lot better.
I am very new to RA. The mornings are my worst time wake up with such stiff hands. I’m on two different medications which I’m told take at least 3 months to kick in. I’m so fed up I’ve asked my rheumatoid nurse can I have steroid injections to help with my hands. Still waiting for that to be sorted. But hoping it will make a difference. It surely is a shock to be told you have RA. As up until now I was such an active person but this has knocked me for six with feeling so knackered and tired
Do hope you get some medication soon.
Just take things easy like I am having to do and let’s hope that once you are sorted you will feel much better
Please try not to worry about the time frame & things getting worse because of it. It took me 9 years to get diagnosed as it didn’t show in my blood. So in the scheme of things 3 months isn’t very long. That said it’s a horrible time & I remember it well. Like you I thought I would have damage & be in a wheelchair. There are lots of different medications they can offer & although it’s trial & error with what suits you best & controls your symptoms most find the right one for them. You can ask your GP if they can expedite your appointment with Rheumatology or see if there’s a cancellation list. NRAS (National Rheumatoid Society) have lots of useful information online or booklets & also a helpline. I think everyone else have pretty much covered things. Take care x
I had symptoms like this while I waited 6 months for Rheumatologist appointment. I found anti inflammatory medication helped a lot. Mainly Vimova. My doctor was very reassuring. When I started on methotrexate my symptoms disappeared completely. Although I wasn’t able to stay on it due to side effects. I am now on Benepali with very little symptoms. Good luck with your journey and try not to worry.
That’s brilliant news th as no you so much.
Although I am not medical doctor there are good chances that the pain and damage is reversible. There are many good helpers out there that can slowly bring life back to limbs and nerves. The key thing is that currently you don't know, and that is hugely anxious place, but soon you will know if the new drugs / better drugs can work and when they do the small improvements will feel wonderful. I almost gave up hope too - but am making millimetres of progress each day (i think). There is an exercise that can help with panic and overwhelm and that is the sad/glad/mad - each day say a few things you are sad about, glad about and furious about - weirdly helps. but please advocate for yourself strongly about getting the best drugs and best treatment you can. As we age things will change - but with the right drugs the body is an amazing thing. reach out for help as you are doing. wishing you well.
Thank you that’s so kind
Don’t read horror stories from Dr Google et al
Worry does aggravate your pain I am not sure why but in my case it does. Telling someone not to worry is not helpful but a friend said to me everything gets better with information and that is true. This site and the good people in it help a great deal.I have found that once you get the right medical help things will improve and you learn to adapt very quickly simple things like doing something that requires effort today -give yourself an easy day tomorrow.
Good luck on the journey 🍀
Thankyou so much. This form is great.
I so recognise this. 67 and in UK. The prednisone will be stopping progression some. There is a huge problem here in the infrastructure for getting RA diagnosed and treated. Like you, my anti-CCP is through the roof. There is a fairly recent paper that says we only respond to Abatracept and Rituximab - not DMARDs, however these treatments are not cheap. I had rituximab and it was successful but moved and now no one will repeat the dose. Currently taking nothing and getting flares and bone thickening. Only advice I have is to hotly pursue any leads, try and gain access to all your paperwork and tests 9they will lose them) and minimise sugar and processed foods. Wishing you more luck than I am having!
My experience has been RA since 2006 and about 2018 started to get the tingling often like small electric shocks every, maybe 25 seconds or a minute or so. No joy from Rhumies so very extensive testing done by a consultant neurologist to conclude that i also have poly neuropathy. Unfortunately an age deteriation of nervous system. Very annoying and painful but comes and goes and for a few years now just numbness in some parts of my feet and toes. Good news is it doesnt kill you but it does annoy you as nothing can be done about it
hey hun, please don’t panic I had a r/f of 80 and my sisters was 122 it can simply mean you have infection somewhere in your body. Your inflammation markers are up but again it may mean it’s fibromyalgia. This is hard for you but always remember the body keeps the score whatever emotional or mental anguish we struggle with in life at some point our body’s ask for time out…. Your. Body is asking you to stop and listen to its needs …. You mention stress and yes it’s our worst enemy …. Its best if you can take some time out surround yourself with good and positive influences and allow your body time to rest and heal ….. no medication is a miracle cure but being able to self regulate ourselves and get in touch with nature and taking time out is so healing …. I wish you all the best on your journey but my advice is listen to your body … 20 years living with fibro and all its co morbidities plants fasciaitis (sorry can’t spell it) medicated pain plasters and pain meds only once a week you can get through this … warmest wishes to you xxx
Thankyou
I just wanted to post a bit of info, my husband used to get planter fasciitis and had a new treatment. As he described it a sort of very painful sonic hammer. He’d been doing exercises for years etc so decided to try it. He had 3 lots of treatments a week apart then follow ups for a while last year a couple of months apart and the pain has gone. He went back to playing golf and is pain free. It wasn’t cheap but worth seeing if you can find a local Osteopath who can offer the treatment and the cost. He used to be in agony with bottles of frozen water in the freezer to roll his foot over and it’s just an idea if your suffering that might help.
Thankyou
That’s really good advice - thank you so much as I’ve just been struggling on with it . I’ve got an osteopath I trust - I didn’t even think of it … so was it an osteopath treatment or a new different technique?
Our Oestopath suggested it to my husband and he was desperately to try anything as off golf for a couple of weeks. I was pleased it worked for him but be warned he said it really hurts when it’s done! He’d been doing exercises for months it sort of helped a bit but this sonic hammer just solved the problem. And when a lovely young Italian with a voice like chocolate and a man bun suggests something don’t you just have to try it ? My husband did know that I’ve have agreed to just listen to his accent never mind pain relief. Roll on the next bit of back ache. Lolxxx
I was treated for 7 years with PR on steriods I'm now on the correct drugs for me and doing well. don't be scared xxx
thankyou
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