New to this forum, hello

New to this forum, hello

Hi there. Sorry if this is a bit of a ramble. My name is Amy and I'm 26. I have had pain in my hands (started off with my right hand but now is both, and now also both big toes and wrists) for about a year now but with having a poorly child I put all my worries aside to focus on him. Well I have now attended the GP as my hands are getting worse and I'm struggling to open bottles, use keys etc and I'm constantly feeling drained. She organised blood tests and the results are as follows:

RF is 38

Anti CCP is 35 (although not sure on the unit of measurement as it says on the results that anything over 7 is a positive whereas online it usually says anything over 20)

ESR is 15 and CRP is 7.

They have urgently referred me to a rheumatologist at Addenbrookes hospital. Does anyone else go here?

I'm super anxious and struggling to concentrate on anything until I've been seen. I've talked myself out of having RA as although I have pain I don't really have much obvious redness or much swelling except on my knuckles which are swollen.

When my GP phoned with the blood tests he kept saying 'I'm sure you are very scared, please know we are thinking of you' etc which makes me feel like I'm dying!! And surely they don't even know that I have anything yet (although I'm guessing it is likely with a positive RF and anti CCP?)

I have teeny hands and to me, the swelling is obvious (and I can feel it is tender to the touch) however I'm worried that they won't see it?!

25 Replies

  • May I also add I do have the morning stiffness (hard when I have a 16 month old wanting a bottle of milk and I have to walk at snails pace to the fridge and struggle with the milk bottle!!)

  • Hi Amy,

    I am Amy too. Go for the appointment immediately. It is very important to get early treatment to avoid any joint being damaged. If you are treated early, you will be back to your normal life. Read my link below to see what had happened to me two years ago and now. I will also upload a very good video that I have just gone through recently, do check that out for good information and decision.

  • Hi Amy,

    I'm not sure about RF and Anti CCP - My Rheumatologists have always just quoted CRP - 0-10 is normal range and ESR 0-20 is normal range. It's good that your GP has been proactive, sympathetic and referred you quickly, it may still take a few weeks or months though. It sounds like you could be at very early stages and symptoms can vary a lot between sufferers, as you will see if you read all the posts. I was diagnosed in 2001, my GP was very honest and said " You will be able to lead a relatively normal life ( I hate that phrase) but you will be on medication from now on" The first appointment is only the start, standard, least expensive, things will be tried first and they may work for you. I had extreme pain and stiffness in all joints for a year and then I got to the top of the waiting list for a biological, Enbrel, which was a miracle, in two days I was pain free. Things were good and pretty settled for 14 years then I had some forced medication changes. Been a tough last 6 months but things are improving again.

    Thinking of you, you are not alone. Hopefully you will have a good team that you trust to look after you. Write down notes for when you have your appointment so you don't forget to mention things. I don't have stiffness in the morning but I'm always asked that so it must be a major sign.

    I only had two very patient dogs when I was struggling so I feel for you with a young child. I hope you get all the love help and support that you need


  • Hi Amy I started with pain in my right hand but just the thumb and first finger now I have it in both hands, my left wrist keeps giving way and I have nodules on 2 of my toes, I had both my big toes "fused" some 20 years ago through arthritis and I am hoping the MX does the job lol

  • Hi Amy

    An unfortunate welcome.

    You may be aware that some folk test positive for anti ccp and RF and don't go on to get RA (or one of its cohorts), and your low ESR and CRP are a good thing.

    On the other hand some folk test negative for RF and still have RA.

    I have (a diagnosis of) seronegative RA, which means negative RF but my inflammatory markers were both in 3 figures for a long time.

    I realise it's impossible, but I'll say it anyway. Try not to over analyse things at this stage, there are many conditions that mimic the symptoms of RA, and even RA itself has a huge variety of symptoms. Some of us have one thing but not another etc. Almost without fail we all have pain as a common symptom, but to greater or lesser degrees, and even with a severe case it can, and is usually controlled to the extent that you can still enjoy your life and look after children (I have two and have been main carer for a few years since they were 1, now 5 & 7). I manage, although it's tough at times.

    If you have been reading through this forum bear in mind that a lot of the people that post on here have particularly severe forms of the disease and don't assume if you have it, it will be anything like some of them.

    I have a friend with RA who runs half marathons, has 2 children and a full-time job. I would guess that is more 'typical' than some of the horror stories you may read.

    When you have been assessed by rheumatology you will have a better idea what you are dealing with. And if it turns out to be RA, know that you can and will be able to live your life. It may take some adjustment, but if you have coped with a poorly child you are strong enough to cope with RA.

    Good luck, and keep us posted.


  • Thanks all. I was under the impression that with positive results for both RF and anti CCP, Morning stiffness and swollen joints it was more than likely.

    I was given an appointment the same day that the referral came through, it's next Friday so Ive only had to wait 12 days in total. I am being seen by a Mr Shenker who runs an inflammatory clinic, as they sad they would rather me be seen there then waiting for an appointment with the early arthritis team.

    It's getting to the point where my right hand fingers will no longer go into a fist and my toes constantly ache and I als have shoulder pain but I still blame my bed for this lol.

  • Keep us posted and we'll help as much as we can! The low inflammatory markers are a very good sign. Are you pretty fit and healthy otherwise? Do you have a good diet?

  • I'm not going to lie, it does 'sound' like it could be an inflammatory arthritis, but like I say there's more than one condition that can cause symptoms like these.

    The positive tests and the inflamed joints seem to point at RA, but you still have to wait and see.

    You are being seen very quickly, which is a massive plus, early treatment can go a long way to minimise any damage that might be done. Some folk on here have had to wait over 30 weeks to see a rheumatologist, which is ridiculous and against the guidelines.

    And some forms can go into remission spontaneously for years.

    Don't give up hope, you will feel better once the meds have been sorted - just be aware that it can take time to find the right one.

    There is also the dietary approach to consider when you feel up to it. If you Google Paddison project or AIP it will give you a starting point. Loads of information out there, but it's important for you to do what's right for you, and listen to rheumatology.

    Good luck.

    Incidentally my wife's family are from near Cambridge. 😀

    Good luck.


  • I know people are saying the low inflammatory markers are a good sign (good sign of what?) but they don't seem to be echoing how I feel as my hands and feet are constantly painful.

    My general health is fine except for having a constant cold like symptoms and just feeling a bit run down. We are pretty good diet wise and everything we cook is from scratch.

  • In general low markers tend to suggest that there is a lower level of inflammation in your entire body.

    That doesn't mean that your hands don't hurt, but it hopefully indicates that your feet, knees, hips, elbows, shoulders etc etc aren't all currently inflamed - too much.

    When your markers are really high it is usually because there is a lot of inflammation all over your system, and it can indicate that you are currently 'uncontrolled' or 'flaring'.

    And it usually goes hand in hand with fatigue, malaise and all the other nasty symptoms that are possible.

    Quite often by the time someone gets to see a rheumatologist their inflammatory markers are off the charts, as mentioned mine were historically in 3 figures for years, until I went on biologics and they have been 'clinically insignificant' since. But my hands and wrists still usually hurt, although I can usually cope with most 'normal' activities.

    And I have one seemingly permanent swollen wrist, that doesn't always hurt even though there is obvious swelling.

    It is confusing, and the tests are just an indication, they can be raised if you have an infection for example that has nothing to do with RA, and they can be quite low for some people but they can still be quite poorly.

    It's all part of why being a rheumatologist is a difficult job!


  • Oh yes forgot, what most people would consider a 'good diet', that is usually a wide variety of different food groups etc, is not always the 'best' diet for autoimmuners.

    There are lots of variations and different folks have different responses to different foods, but in general avoiding fats, dairy, sugar (including from fruit), processed or refined foods, any simple carbs etc etc seem to be the commonly agreed inflammatory foods.

    Some recommend an elimination diet, cutting out lots of potential trigger foods and then slowly reintroducing in a controlled way one at a time to find out what your personal 'safe foods' are.

    Like I say there's lots of info out there, but when (and if) you're ready.


  • Yes, I know Addenbrookes.

  • It sounds as if you have a very proactive GP that and the fact you have been referred to a rheumatologist so quickly is all beneficial for your diagnosis and future care.

    I hope everything works out for you. I would suggest as we all forget things when we are anxious, that you write down your symptoms before seeing the consultant include the morning stiffness, the weakening of grip in fact anything you can think of and how it is affecting you. It will help whoever you see have a clearer picture.

    good luck, let us know how it goes.

  • Hi Amy,

    Sorry to here that you qualify to join our ranks but a heartfelt welcome.

    Good to here that you have a supportive GP who is proactive about getting things right for you.

    These next months can be scary and stress making so be sure to talk things through with Drs, family, friends, here etc. Ask all the questions you need to and hopefully you'll get the answers you need.

    The meds can be a bit hardcore but early robust treatment is the key to getting things back under control.

    Ask to see an occupational therapist re your hands and they will give you advice on how to best protect your hand joints... I have soft sprints for when typing or doing heavy stuff like making beds.

    A podiatrist will advise about your feet and an orthotics practitioner can have special insoles made for you to protect toe joints (my insoles have a sunken space where my big toe joints sit to take the weight of them and they are the best thing ever in my opinion) - again GP can refer you to these.

    I asked to see a counsellor when newly diagnosed to talk through my feelings and fears around having condition and it greatly helped ... quite a few of us here have/do use therapist/counsellor support and quite a few don't!

    It might help to write down any questions or things you want yo say to the rheumatologist re your symptoms as, if you're like me, such things just go out of my head in the moment. You can also, if you want to, take someone in with you (a family member or a friend).

    All the best


  • Thanks everyone. I'm going to write a list of my symptoms and things like that and my husband is coming along with me for moral support. It might sound silly but I don't mind having RA or lupus or whatever it is, as long as I know and it's being treated. It's the waiting that sucks and I know I've had a ridiculously short time to wait compared to lots of people.

  • Hubby going is a good idea for lots of reasons.

    It shows he cares. ❤️

    He will better understand what you are BOTH facing.

    He will be able to listen more objectively than you, and may remember things / think of questions that you don't.

    It will help him to address any concerns that he might have (and he will have concerns, lots of them).

    Moral support.

    And you haven't had a ridiculously short wait, your wait has been about right. Others have had ridiculously long waits. 😉

    I was lucky enough to have private cover, so didn't wait at all. That's how it should be for everyone.


  • Too true. We did require about private appointments and could have got one for last weekend, but the consultants secretary was on holiday so although there was a free appointment it couldn't be reserved!

  • Hi Amy. I would like to echo Ade's comments and wish you all the best. x

  • Hello Amy,

    I am under Dr Shenker at Addenbrookes for RA. You will find him to be an excellent physician who is easy to talk to. Do a bit of research before your appointment and ask all the questions you have. If the diagnosis is confirmed you will need to become an expert and manage your own case.

    You have my sympathy in having to cope with a young child and be suffering. I started with the disease in my early 20s and my son was born when I was 32 and the condition was fairly advanced. However, modern therapies are highly effective and prevent the disabilities and deformities which used to occur with ineffective treatments.

    It may be trial and error at first until the right drugs are found for you as everyone responds differently. Hope things go well for you. Best wishes Pam.

  • Thanks so much scorer. May I ask how you found out you had it - did it start gradually or fairly quickly? And how did your first appt at addenbrookes go? I know some first appts are very quick and some are more thorough. I'm hoping that as my blood results were all done in the last two weeks he can use them, and hopefully do some tests on the day so I'm not left completely in the dark.

    I'm so grateful as apparently he has personally decided to take on my case so that I didn't have to wait for the early arthritis clinic.

  • And my little boy is on oxygen and it's getting to the point where I can't carry it or change the flow meter on the tank. It's hard when my husband is at work and my hands and feet are so stiff and all he wants to do is play as id never want to hold him back

  • Dear Amy,

    My Mum had severe RA so I suspected I had it when I was 21. Came on very rapidly. Was diagnosed at 23 after seeing the consultant. That was 42 years ago so things were very different then! I was a nurse and eventually had to give up my job at 28 as I couldn't do the physically demanding tasks. Then went to University.

    So sorry to hear about your little boy. Do explain to Dr Shenker about your difficulties. He has a young family of his own. Would be interested to hear how you go on.

    Just one thing I would say to you, if anyone offers any help don't be too proud to accept whilst you are unwell.

    A big hug to you

  • Hi Amy,

    Welcome to the forum. This is the most taxing time when you are waiting for a definitive diagnosis. If you would like to call the helpline and have a chat about things, please feel free to do so. You can call us on:

    0800 298 7650 Monday - Friday 9.30am -4.30pm

    I went to a talk given by Dr Shenke last year about medication and pain management. It was very interesting. Hope you get sorted swiftly,


    Beverley (NRAS helpline)

  • Thanks Beverley, I would phone but im at work. My hands and feet are feeling worse every day and I'm so worried they will X Ray me and not see anything! Surely it can't all be in my head though?!

  • Don't overthink things. If they do an X-ray and it shows nothing - rejoice! It means no damage, nothing that shows up on X-ray. I don't know Dr Shenker but he sounds like a decent chap, as mentioned above tell him about the problems you are having with your son, as a family man he will empathise and I'm sure do everything in his power to help you.

    And no it isn't in your head, it hurts for a reason. Let the rheumatologist work out what that reason is and treat you accordingly.


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