Possible RA?

Hi All, this is my first post and I'm new to all this. Posting at this time because I can't sleep because my shoulder hurts too much. A few months ago I started with pain in my little toe and the one next to it on both feet at the same time when I walked. Over the space of a month it gradually moved to both ankles, both knees, my little finger and ring finger on each hand (bad enough that I could no longer wear my wedding ring) both elbows and then both shoulders. As it got higher up my body, the intensity of the pain seemed to increase. My elbows and shoulders are the worst, and my left side worse than my right. Sometimes my elbows get so stiff, like they've locked, and I physically have to force it straight and it lets out a massive, painful click before it will go straight. It seems worse on a night. If I roll onto my shoulder whilst i'm asleep I wake up due to the pain. It took me nearly 2 months to get an appointment with my preferred doctor, and I finally had blood tests on Monday to test for Rheumatoid factor, uric acid (think that's the right one) and something else. I called today to see if my results have come in and the receptionist has said my uric acid and other came back 'normal' but that my rheumatoid factor came back with low levels of inflamation. He didn't tell me what the levels were, so I have no clue how 'low' they are, but my question is, does this mean I have RA? Would the result for the rheumatoid factor have been completely negative if I don't have it? The doctor who got me tested hs no appointments free at all so I need to call monday morning to see if I can get hold of a cancellation for wednesday or not. I'm obviously very new to this, and maybe i'm just making assumptions and jumping the gun based on the limited information the receptionist gave me, but can anyone advise what I do next? Or shead any light on the 'low levels of inflamation' showing for the rheumatoid factor? Did any of you have low levels, and what did it mean for you? Thanks in advance for any responses. I am currently off work sick due to anxiety and depression, and this pain isn't helping, neither is the unknown, so I just want to get to the bottom of it as soon as I can.

I'm only 30 and have two young sons, aged 21 months and 3 and a half years, and having them climb all over me is agony, but I don't want to be mean mummy and refuse cuddles :(

Thanks again.

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15 Replies

  • Morning MrsH

    Bless your heart and hello from the wee small hours where us sufferers lurk frequently due to our aches and pains, side effects and insomnia.

    Later today I am sure that far more experienced words of advice will come for you but I saw your post and just had to give you a virtual hug.

    Whatever is wrong with you and the definitive diagnosis can take a while sometimes you will have to become your own advocate and expert.

    My advice is get an appointment with your doctor, in fact as you are suffering so badly with multiple joints effected I would take the first appointment you can get on Monday morning.

    Your symptoms sound very similar to mine which started in June this year ( in retrospect there had been hints a long time before it all exploded)

    I thought I had over exercised and pulled my hamstrings or something muscular but like you it swiftly overtook many joints in quite spectacular fashion.

    Going from super active to the physical capability of an 85 year old in a matter of days.

    From that moment started this new journey and a extremely swift learning curve.

    Some GP's are excellent and knowledgeable about inflammatory arthritis some are stuck in the dark ages, some are kind but not 100% up on the latest tests and treatments.

    You will need to go through the blood tests with your GP who using these and examining you and listening to your symptoms will then probably refer you to a Rheumatology Specialist.

    In my case my referral took just under 4 weeks. The belief now is to fast track people and start early aggressive therapy once diagnosed.

    In the meantime you might find that your GP might prescribe you Corticosteroids such as Prednisalone.

    These will almost seem like a miracle drug but you will need to learn a lot about them and as in my case there can be a love hate relationship with these little pills.

    The GP will check your ESR which stands for erythrocyte sedimentation rate. This is an indicator of inflammation in your body though not a diagnostic for a particular disease.

    My disease is Seronegative Rheumatoid Arthritis. This means I tested negative for Rheumatoid factor but I am told by the Consultant and Rheumatology nurses that this can change in time. I also have negative anti CCP antibodies which I am told is a good thing but still all this doesn't take away from the fact I have RA.

    My nurse explained it that you could test everyone on the high street and a large percentage would test positive for RF and would never actually show symptoms of the disease.

    You must also be aware that there are multiple causes and different diseases and types of arthritis that can give similar symptoms. This is why specialist treatment is so necessary and to get it quick to prevent permanent joint damage.

    Please come back and tell us how you get on with your GP, you have to start there and if we can help you in any way, there is vast amounts of advice on this site.

    Try not to be too overwhelmed though that is a ridiculous thing to say on my part as my life has been changed beyond all recognition in the last few months.

    Good luck and one of the best pieces of advice I got from my Rheumatology nurse was to take soluble paracetamol for the pain and take it in a regular fashion. It's not as cheap as ordinary tablets but made a big difference to me in the early days before I got onto the hard stuff.

    All the best and my total sympathy goes out to you struggling with little kids.

    It will improve I promise.

    Mand x

  • Hiya - well, I'm always learning, didn't know there was such a thing a soluble paracetamol!! Thanks for the tip, I struggle with pain relief so will give that aa try. x

  • Hiya Scotslass,

    I know, me neither but it helped me, another weapon in the armoury so to speak.

    Approximately £4,00 from any chemist.

    Mand x

  • Well darling you sound like you have RA,but before i go on look at the NRAS site for symptoms. Try not to worry too much if you can as if it is ra it is not the death sentence it used to be. Yes you will go through periods of flares and you will wondr if your ever going to get through it. Youwill though. You won't be the same,but you will be different and different is fine darling. Keep on at your drs about it and if there is ra elements then in my book it is ra, to my mind ra is ra how ever high or low it is and if you get treatment and it kicks in(sometimes it can take weeks before you feel a difference) You will feel so different. So try not to worry too much darling. Hugs from me.xxx

  • Hi, and welcome to the site! I'm no expert on the various blood tests because nothing has ever showed up in mine, but that can happen, it's called seronegative RA in my case. But from what you say about your pain, it definitely sounds like RA. Please, please start pressing your GP to be referred to a Rheumatologist right away - even if NO inflammation showed in the blood tests, your symptoms alone mean you need to see a specialist. Don't take no for an answer - that's a really hard lesson we've all had to learn, you need to push and keep pushing until you get the help you need. Of course, a referral will take time, but I hope you'll get one as soon as poss. Is there any chance you could afford to see a rheumy privately? Sadly, with the state of the NHS nowadays, I do think some sort of health insurance plan would be worth paying for, if I was younger and working. (over 60 now so no chance!) Anyway, I really feel for you, esp having young children too - it must be horrible to not be able to cuddle them properly. I'm sure you'll find lots of help and support on here, we all need each other! Remember - even if you can only speak to your GP by phone, insist (politely!) on a quick referral. Good luck, sending you love and hugs. x 😊

  • Thank you all so much, you are all so kind. My Doctor is usually great, so I will speak with him and ask for a referral. The only issue is that he's the only good GP in my practice, so appointmemts with him are like gold dust, extremely hard to come by.

    My work do offer private health care for me as standard with Bupa, so I may look into that. I think I need a referral from my doctor still and I need to pay an excess, but worth looking into as I've never used it before.

    I'll get some soluble paracetamol. I try to put up with the pain as much as I can, as I don't like taking tablets if I can help it. I've been the healthiest in my family all my life, never any issues, always had a high pain threshold, and this has just all come on so suddenly the past few months. I feel like I turned 30 and my body just gave up and I got old all of a sudden. I can't even hold my arms in the air for too long because my shoulders hurt too much. I'll have a look at the NRAS website and arm myself with info to take with me to the doctor when I see him.

    Thank you again, you're all so lovely. X

  • Told you!! (about everyone on here being so supportive I mean). Really hope you get a referral and some answers soon. Just what you wanted for Christmas, eh? Try to get as much rest as you can in the meantime. Hope you have a little bit of help with those wee ones! Sending you even more love and good vibes. S. xx

  • Keep a record of your symptoms and signs (like swelling, redness of joints) in a diary. It is so easy to forget whether it was two weeks ago or four weeks ago that you had the pains in your finger joints and then it moved to the ankles...

    Make another appointment with your GP as soon as you can now, and make another one for two or three weeks time when you come out. You can always cancel if you don't need one, but at this stage you are probably going to need a series of appointments. You also need a referral to a rheumatology team in the pipeline.

    It depends very much on your GP's interests and confidence whether you will get any specific treatment at this stage. Many GPs have little expertise with musculo-skeletal conditions and can only do the basic tests and give pain relief. Others may have more experience.

    Read the information on the NRAS site. Remember that most people on here have problems - that's why they are writing in. The masses of people who live with RA and have a controlled disease is larger.

  • When I was diagnosed with RA 7 years ago I had a battery of test privately at the time for other things such as Lyme Desease and Iron Overload syndrome which throw up similar symptoms. A lot of GP's are not up to date on RA diagnosis which shows when they are still using the Rheuamatoid Factor test which dates back to the 1940's. You need to get a CCP antibody test done which is the proper standard now for RA. My RA started by pain jumping around from joint to joint especially my shoulders, wrists and hands similar to yourself. I am generally stable now with methotrexate (which gives me some side effects) but if I stop the MTX I get a lot of fever/flu like symptoms. RA is a strange disease and is much more than just joint pain.

  • So sorry to hear what a rotten time you are having. I like to have copies of all my blood test results so I can keep an eye on what's happening. When you eventually are referred to a rheumatologist they will probably give you a card to chart your results. Meanwhile if you ask your GP receptionist for a copy, (mine emails them to me), then at least you can start to understand what's going on.

    Hope this helps!

    The important ones are CRP, ESR CCP, RF......you'll get lots of support and help from the forum.

  • Some great advice. I am just starting to go through the process for RA but having had several other autoimmune diseases in the last few years I also found that knowing more about your disease than your average GP and knowing which questions to ask tend to determine the quality of of the treatment received. And unfortunately I learned the hard way and suffered too much, for too long.

    Many GPs have expert experience so in my GP practice we have a GP who specializes in end of life care, another who trained in cardiac and another in emergency medicine, most GPs nowadays will have a 'special interest' therefor it is always a good idea to read up on their professional biographies or ask the reception staff if there is a GP in your practice who has specialist rheumatoid experience, I found out that one of our GPs was the best person to see for RA as it turned out he had been a consultant rheumatologist in a previous life. He was brilliant and cut straight to the chase ordering X-rays and blood tests and booking further appointments and flagging up stuff from my early life into what they call the 'front page' so it didn't get missed. He was not my preferred GP but had the expertise to pick up on stuff, you don't have to like your doctor, just ensure he has the right training and experience for your condition.

    I echo everyone else's empathy for having to cope with such pain and immobility with small children. Very best wishes CD.

  • I also made app with a physio to get wrist splints and gloves which have helped and I also asked to see an OT who came out to my home and advised about gadgets around the house to help me with everyday living. But I have pushed & pushed over the last 2 years since I felt the first pains ! Good luck hun. No one will tell you what to do thats why this site is a godsend. X

  • So sorry you've needed to reach out here but welcome. You've received good advice in the main but specifically mine would be to heed your GP's advice & the others here 're the blood tests & ensure you're referred to the Early Arthritis Clinic for diagnosis & further testing & imaging. The earlier you receive a firm diagnosis & treatment the better the long term prognosis.

    If you can gather as much family support as possible, that would be extremely helpful. It may not be easy with two little ones just now but it will get easier, try to focus on that, this isn't a permanent situation.

    We're here when you need advice or experience whether it be with your choices of meds & self help or hints & tips from other young mums.

    An invaluable piece of advice my GP gave me after she strongly suspected I had RD was to not take the NSAID & pain relief she prescribed whilst waiting for my appointment for a couple of days prior to my appointment at the diagnostic clinic. This gave them med free baseline results to accurately confirm diagnosis through blood tests, imaging & physical exam to start on appropriate meds & doses. It might be worth asking your GP if that's advisable for you should he prescribe interim non specialist meds.

    Take care for now & keep in touch. :)

  • Hi. Oh! you poor thing. It sounds like you have RA to me but obviously you will have to see a Rheumatologist to confirm this. I am sure there isn't one person on this site that doesn't feel every second of pain for you. It is particularly difficult for you with having very young children. My advice would be to take paracetamol and ibuprofen if you can tolerate them. Keep ringing and asking for a cancellation appointment. The annoying thing is that literally dozens of people make appointments and don't keep them, if they would just pick the phone up and cancel you wouldn't need to wait so long. There are regularly 30 to 50 missed appointments at my rheumatology clinic each month. I hope you are seen soon and can get started on medication that will help to alleviate your symptoms. The best of luck xx

  • Hello Mrs. H

    This is a great site to seek information and support and the U.K. Arthritis website is fabulous. I know that RA has many different manifestations and a diagnosis doesn't depend on one or two blood test results. You have see the specialist and I suggest bringing a written summary of how your symptoms began and describing your 'functional limitations' as you feel them now.

    It must be very hard being so young and with two young children. Take care of yourself and all the best, Doreen

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