Hello Everyone. I'm new here and feeling anxious. I hope you don't mind me telling you my story and asking for a bit of advice.
About six weeks ago one of my fingers started feeling really stiff and painful first thing in the morning. I ignored it for a bit, but it then progressed to all my fingers on my left hand. Lots of my joints began to ache, especially if I sit still for any length of time. If I keep my hand still for a few minutes it begins to lock up. My other hand has also started hurting. I went to the doctors last week and she said she thought it was probably rheumatoid arthritis. She said she'd refer me to a rheumatologist and tomorrow I'm having a blood test at the GP surgery (for the rheumatoid factor I believe). I got my referral form today and tried to book an appointment on the online system to be told there is none available. Apparently the clinic will contact me to book an appointment within a few weeks, but the average waiting time is 17 weeks. Meanwhile it feels like every day new symptoms arise. Today I notice my knuckles in my sorest fingers have little lumps developing on them. I feel exhausted all the time and am struggling to sleep. My joints ache intermittently in a way that's impossible to ignore. The GP stressed that getting a fast diagnosis means that it's easier to treat and more chance of preventing damage so I'm scared at having to wait so long to see someone. This has all happened so quickly from nowhere and I feel really anxious about it. I have previously been really active and had a healthy lifestyle running at least three times a week and coaching a junior triathlon club.
I feel like until I get a diagnosis I'm in limbo which is a frightening place to be :-(.
Any help or advice gratefully appreciated.
Thanks for reading
Deb
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DeborahOBE
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Hi Deb- so sorry to find you on here...I mean that it the nicest possible way 😆
Your story sounds similar to mine. At the beginning, while I was waiting for my appointment, the gp gave me a steroid injection. Although it didn't help me it does help many people - you could ask for one possibly? Also anti-imflamatoties can help which your gp can prescribe. Hope you get sorted soon. Resting and moving helps too- if that makes sense 🙂
Thank you for replying to me Moomin8- I really appreciate it.
It's useful to know that the GP might prescribe me anti-inflammatories while I wait. After my blood test, I may ask if they can do that for me. I know what you mean by resting and moving- I've felt how much that's a delicate balance already.
I guess there's no answer to the mental torment I'm putting myself through while waiting! I'm not very patient at the best of times- I like to know all the answers straight away.
Sounds as if we are all in the same boat I take Ibuprofen by the bottles, but today I just started Kenalog 40 injections I hope and pray all goes well for both of you
Push your GP to give you an urgent referral, and then keep politely pestering. If you are flexible you can also ask about cancellations, as sometimes these can pop up - but short notice. If you do have one of the inflammatory diseases then sadly you'll discover that rheumatology departments are very overstretched. So you have to be proactive and keep on top of everything, and keep notes.
It can hit you like a train, but that doesn't necessarily mean that it will continue like that. I went from active to bed bound in weeks and it was terrifying. But am now fine, and 95% normal again. So try not to panic (hard I know, and I certainly did!)
As Moomin said there are things that can help in the short term, but stop taking them at least a week before your first appointment so the rheumy can see you unmedicated.
Thank you Helix. I'm not great at being assertive so I'll find it hard to push for an appointment, but I'll definitely look into cancellations. It's reassuring to hear that you recovered from your initial fast deterioration. It's all such an unknown to me and I'm constantly searching the web for stories to give me some idea of what to expect.
I also have a difficult time being assertive but you have to be your own best Advocate when it comes to your health and pain do not give up keep pushing and yes I agree call for cancellations at least two to three times a week you may get lucky as I did good luck to you
Hi Deb I have been to first clinic today, been waiting since August. Clinic phoned me Thursday to attend today. Last week I asked at my gp reception as I hadn't even received a letter, they chased it up for me! Got a different diagnosis than my gp thought. It's hard waiting I tried to focus on other things (got all my Christmas shopping done) and did a lot of reading on different types of arthritis
Thaks Jules. I've decided today that distraction is the way to go! Reading up on stuff really helps me too, but it also raises a lot of questions that I can't get the answers to yet, which is a bit frustrating. Christmas shopping is definitely my next priority!
I I feel so badly for you I have been in the same boat takes 3 to 6 months to get an appointment with a rheumatologist in the meantime you're in pain and you still have to carry on with life all I can suggest is ibuprofen which I don't know that it really helps it does relieve the inflammation which in the long run relieve some pain right now I am just begun Kenalog 40 injections and I'm waiting to see how long before it begins to work good luck to you and don't give up
I know that you are scared of the your future now, but you needn't be. There have been a lot of advances in treating this disease over the last decade. Your doctors are going to find the right "cocktail" of meds for you.
The smartest thing you did to halt this disease was going to the doctor with your strange symptoms. The second smartest thing you did was join this well informed caring support group. You have friends here. You are not alone..
The best advice I can give you is to contact your GP and ask for a steroid shot. Then request that your rheumy appointment needs to be fast tracked. Offer to accept any cancelled rheumy appointments.
Hi sorry that u are struggling your story very similar to mine. I was diagnosed a year ago I was a nurse ( still am) and a part time fitness instructor. I have had to fit all the way with this disease. I am now struggling to get the next level of drugs. I don't know your financial situation but a private consultation is about 250. If u get your inflammatory marker and rheumatoid blood done at the drs and a referral letter u could been seen by private consultant then but back in nhs system I know this is disgusting. And I really feel for you. This is my email add if you would like to talk more robonson_zoe@sky.com xxxx
I agree with Zoe I was diagnosed very recently but I took my first two appointments privately because the Nhs wait was so long I am on a cocktail of meds which doesn't seem to be working at the moment by that I mean I am not getting any worse but not getting better. Now I am on the Nhs my next appointment is not until January but I am happy with that because I know I have to give the drugs at least 3 or 4 months to work. If you could I would do as I did it's so worth it. I do hope you get sorted soon because I know how you feel so scarey x
Thanks Zoe. My husband did suggest a private appointment, but right now we can't really afford it (especially with Christmas- I have 4 kids!) :-(. I guess if things continue to get worse it might have to become a priority though. Thank you for your email address- I may take you up on that offer. xx
I can think of 2 ways to hopefully get seen quicker. 1). Can you afford to be seen privately for your first appointment....(.check costs first though as they can vary ) and ask consultant to transfer you to NHS. 2). Contact the appointment line and say you can at short notice accept a cancellation. Hope you get seen soon.
Hi and welcome. Keeping my fingers crossed for you that you find some relief soon. I also had a long wait for an NHS appt but have a great team of people who look after me now, GP and Rheumatology team and physio. It's so important that you have trust in the team around you. I'm very early on in the diagnostic process so know what a scary time this is for you. Really hard but try to stay off Doctor Google, it's really not good sometimes. If you have any questions, come here for support and advice. There's a great group of people on here and I know I have found them to be a great support.
Hi, it appears that your GP knows that an early referral is important, as did mine. She helped me by faxing a letter of referral through asking that I be seen as urgent, which worked.
Yes the same happened to me. I first went to Gp in late Dec, was given a 'semi urgent' app for mid March but NSAIDs and other strong painkillers did nothing at all for the strong pain. Back to Gp again in early Feb when a blood test showed massively inc inflammmation so put on steroid tablets and Gp fast tracked rheum app to urgent. App then 10 days later by which time of course steroids had dampened all symptoms down! Probably is an idea to stop them a week before app as suggested above but I was just so relieved to be relatively pain free. I was found to have both rheumatoid factor and to be anti CCP positive for RA as well as having x ray evidence of OA in both knees and my hands so, along with my history, I guess in my case not too difficult a diagnosis. 9 months on I am off the steroids completely, on methotrexate and hydroxychloroquine and am very well- very little pain or side effects from drugs. Long may it last!
You don't say where you live darling. Can you afford to go private for your first consultation as the rheumy will be able to start you off with some dmards. I am surprised your dr didn't give you any painkillers to help you darling.xxxxx
I'm in the same position diagnosed with osteoarthritis of the hip then all hell broke lose....hands ankles hips and its affecting my spine I have 5disk displacement....I've had the rheumatoid factor blood test....amongst others and hand x-rays (still waiting on results) waiting for a rhumy appointment waiting list is 89 days...limbo is just how it feels....I was preparing to go back to work as I'd been a carer for my partner who passed away in February....so I really am stuck not knowing....but keeping fairly upbeat... between bouts of fatigue I'm working on small pieces...its good to know I'm, we are not alone 😊
I know it's no comfort, but you should be quite thankful that you have a GP that wanted to refer you. I spent two years being told by 7 different GPs at my surgery that I have gout even though I knew it was something else. I saw an out-of-hours GP at my local hospital one night when I was struggling who said I needed to demand a referral from my own GP - they still refused!
2.5 years later I finally got someone to refer me after taking the wrong medication for a couple of years, then I had a 14 week wait. Thankfully I think I'm only left with permanently degraded ankle so far.
If it's 17 weeks you have to wait (I couldn't afford private) then the absolute best thing you could do would be to prepare by keeping a log of your flares and aches and pains and try to educate yourself a little on the right questions to ask on the day.
Thank you- that's really helpful advice. Thanks for reminding me that I should be grateful that she referred me too. One of the reasons that I was delaying going to the GP was that I didn't think she'd take it seriously, so I was really pleased when she referred me straight away. I'm sorry to hear that you had such a hard time getting the right treatment
Cannot add much to the mix of advice here but my GP had x rays done at the local hospital and put me on Naproxen to start me off with some assistance. The hospital told me to continue the Naproxen whilst I settled on my regime of meds.
Persistence is the key and like others I did a lot of research prior to my first consultation. Once you are on the merry go round (in my - lucky- experience) the help is there!
Thank you so much for all your replies. It means so much to me to come on here and read all your kind words and advice. I'm just back from my blood test and oddly, I feel slightly better this morning. I don't know if this is normal, but the pain seems to come and go. Sometimes I feel alright for part of the day, then something flares up.
Anyway, I really appreciate your support and I'm so glad I found this forum.
Hi Deborah, Welcome to the site. Sorry you need it.
I think the the period between diagnosis to being seen by a rheumatologist is the worst, stuck in limbo and scared . As others have said keep phoning the rheumy team to try and get a cancellation. Sadly it is not seen as a sexy dept, so underfunded and overworked.
In the meantime I suggest you make another appointment to see your GP they can help in the interim . Steroid injections work for a lot of people myself included, there are also anti inflammation drugs and pain killers they could prescribed in the interim. Not ideal but if it gives some relief worth discussing with your GP.
Hi Deborah, im another one that agrees with tbe pack and im afraid im also another one that got hit hard and fast by this evil disease. My problems hsve been well documented here and im not going to dip into that pool here and now because i regard your situation as more important. I too would push as hard as possible to move this appointment forward. Im guessing that your helpful GP is maybe not aware of the long waiting period?, if you havnt already i would suggest getting another appointment with your GP and asking that they email the consultant asking that you be moved forward and or offer a cancelation. You will find that there definately will be cancellations because although everyone here realises the importance of those appointments the nature of the disease is that it can be that you are too ill or immobile to make the appointment and that misfortune of others may work in your favour. If you have any other route to get access to a private consultant through maybe employment of yours or your husbands? or maybe a relative that is able to help you out then i would advise you to consider biting the bullet and asking for help from them. None of us like to turn to family for financial help but in this case it maybe that in the future those people will say that they wish you had asked them, please consider it. I do also agree with others that your GP could maybe start you with anti inflammatories or other treatment that they consider appropriate and again when they realise the wait it may be suggested. However those treatments will be to address symptoms not the cause. I agree again with those saying stay away from Dr Google but with reservations because sites like this are wonderful and the links to advice that you get here will lead you to balanced and accurate information, i have also found Google useful to reference specific drug information and for example to be informed on blood test values of what is a "norm" or base level and what the test are for. After 5 years i can honestly say that the best support and advice i have had has been right where you are now, the variety of experience and knowledge here and the kindness and understanding is in my experience unmatched. Im really sorry that you have had the need to find us, but given that need im glad that you have. Please consider that all of us are able to help each other here, any one that thinks they know everything about this disease has a lot to learn and we can all gain from your fresh views and looking at things from angles that maybe none of us have considered but also whilst some of us are way ahead of you on this journey next week and onwards there will be others that come along behind you and for them your recent experience may be much more relevant than for example my more historic perspective.
It is difficult to take too much from one posting but you come across as a polite and intelligent individual with consideration for others. I would never suggest you loose those attributes but remember that your children depend on you being as well as possible and whilst you might not stamp your feet and shove yourself forward for your own sake try and look at this as a health problem that they are also facing and in this case give yourself the same priority that i know you would give them.
Please keep us informed. My very best wishes and gentle hugs. Leon.
Thank you Leon. What you said about looking at it as a health problem that the children are also facing really struck a chord. I find it hard to prioritise myself, but doing it for them makes a lot of sense. Thank you for your support. Deb
Hello Deborah,
I am very sorry to hear about the lengthy waiting time you are experiencing. It would be useful for us to know where in the country you are so that we can get a better picture of the state of services. I understand if you would rather not post that publicly so please feel free to email campaigns AT nras.org.uk instead.
As others have said, your GP pushing for an urgent referral, often through the super-modern tech that is FAX is often the only way to hurry things along. Please do contact the NRAS Helpline if you would like to.
Thank you Conn. I'm in the Nottingham/ Derby area. If my pain persists then I'll definitely get back to the GP and ask for an urgent referral. I appreciate your advice and support.
Hi Conn, just to let you know that I got a date for my first rheumatology appointment through today. It is for 12th Jan, so it's 8 weeks from my original GP appointment. Although they stated 17 weeks was the average wait, it seems that it's not quite as bad as that at the moment!
Hi Deborah,
please feel free to call the helpline ti have a chat about things. You can call us on:
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hi i'm new to the site.
Long and frustrating road
RA or Psoriatic arthritis?
I'm new here, would say hello to everyone
