Fear and Panic

[Zill8]

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.

[Zill8]

forgot to say I am on 15mg prednisolone.

[JenniferW]

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.

[Zill8 in reply to JenniferW]

Thank you Jennifer

[zen4]

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

[Zill8 in reply to zen4]

Thankyou Zen that has cheered me up.

[medway-lady]

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.

[Zill8 in reply to medway-lady]

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.

[medway-lady in reply to Zill8]

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.

[helixhelix]

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.

[Zill8 in reply to helixhelix]

Thank you so much. This community has made me feel 100% more optimistic already.

[Deeb1764]

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. 🥰