Newbie

Good afternoon all. I hope I am not jumping the gun in joining as I await diagnosis. My first rheumatologist appointment is on the 16th December and I can't wait as NSAIDs are not really doing much and I want to get back to work. I know it is a dangerous thing to self diagnose but I hope I have been objective about my symptoms and I had to do something in the 2 and a half months between referral and appointment. Anyway, it is good to read and expand my knowledge and, if I'm right and it is RA, I will have a head start. Rob x

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31 Replies

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  • Hello and welcome to the club.

    I am sorry that you have waited 2 and half months. It must feel like a lifetime.

    You are right to research this horridious disease. But for your own peace of mind stay off Dr Google and stick to NRAS and Arthritis UK.

    I hope that you get your diagnosis soon. Make sure that you write everything down and take a friend to the appointment. You may feel that you are ready, but the truth may still give you a jolt.

    All the best

    Jacqui

  • Thank you Jacqui and good advice. I am begining to realise it is an ever changing condition. In the morning everything seems to hurt and I am even having some problems with collar bones and ribs. But the worst seems to be toes, ankles and knees. These seem to be the joints that effect your day to day life. Fingers are bad too - I tell you what I am never buying squeezy Marmite again!

  • Hi and welcome hopefully your appt goes well and your given different drugs to help you everybody here was in the same boat and it can be frustrating at first until they get you on the right medication

  • Thank you. At the moment it is a day to day discovery of things I now cannot do that I used to take for granted. Draining a saucepan through a colander was today's one.

  • I haven't done that in months. We have changed electrics in the kitchen. The microwave has a big handle to pull, our kettle is a hot water dispenser, which I fill up with a hug (it has a variable dispensing level, from half a cup to about a litre). I also have an extremely understanding hubby.

    Jacqui

  • Jacqui, where can I buy a hot water dispenser which you can fill with a hug, I like the sound of that?!! Sorry couldn't resist.

  • So do I, lol

    Jacqui

  • My wife, like me, is just coming to terms with this. It's very hard as we are both used to me being quite active and I find myself having to swallow my pride to ask for help. One thing I am not looking forward to is being judged by a tradesman who gives me the 'can't you do that for yourself?' look.

  • I thought nothing of picking people up and loading into an ambulance, now I think twice about picking up a shopping bag. The problem is that we have an invisible disease. People expect the disabled to be in a wheelchair. It is difficult.

    Jacqui

  • Wink at that tradesman & blow him a kiss.....that will shut him up!

  • I use a slotted spoon to lift veggies out. My husband sorts the pans when he gets in.

  • Try a steamer no need for a colander & it keeps more of the flavour in the veggies!

    Wait until you try to turn on/off your electric toothbrush !!!

  • Hi Rob,

    Welcome. This condition is not one you arrive at from whimsy, in reference to your self-diagnosis. Your GP would not have made a reference without some idea that RA would be possible.

    This is a great place and I was all over it like a rash when I had a considered diagnosis. One of the things that struck me was the range of symptoms people report. Some this problem, others that, even some with both. You too, will probably be a mixed bag of symptoms but don't be concerned if your exact pattern is not matched by others here.

    As I like to say, "This is your auto-immune system making a disease just for you! It's personal."

    Your disease will manifest itself in ways that are unique to you. Do push medical staff for a plan on what's going to happen next and how you might deal with it.

    Meanwhile, save your joints and don't do that marathon!

    MJ

  • Thanks MJ. I have never been one to do the whole internet doctor thing but I kind of arrived at RA after eliminating everything else. Like many on here, I was a normal fit 40 something person when all of a sudden I was finding myself reaching for an imaginary rope when getting out of a chair and Mrs. Doe was complaining at me always leaving taps dripping. Work are doing the whole, 'aren't you a bit young for that?' thing but I hope to educate them. I never knew socks would become my enemy.

  • Socks? As in, my feet are too hot?

    Rip them off, I say. And the foot pain/ache in the evening when you get to take the weight off them - ohhhh... it's almost tears before bedtime.

    Oy vey.

  • Lever taps are the best taps invented for sore & stiff hands, all ours have been replaced. Door handles too, we had knobs, all replaced when I was stuck in the loo because I couldn't turn the door knob & with nobody in the house I was in there a good while!

  • Me too no more heels!

  • Hiya Kiki, How are you doing?

  • IVe messaged you

  • I do agree that every case of RA seems to be different in specific symptoms and reaction to meds- although obviously with things in common. I have a niece and a first cousin who also have the disease and we all seem to be different in our specific problems, reactions to meds etc. I also know someone who was diagnosed some years ago and manages with no meds at all?!

  • Hiya & welcome Rob. Well, we've info, experience &, from that, advice immeasurable here. Am I understanding correctly, have you self-referred to Rheumatology or do you mean self-medicating with an NSAID? Either way I'm sorry you think you need to be here & the one you're taking isn't helping much but your GP should be able to prescribe something which may help more. One thing to consider though is stopping taking it a few days before your initial Rheumy appointment. This may seem to go against everything that's right but if I explain. In order for your Rheumy to work from correct baseline results to diagnose & form a treatment plan from the blood tests, imaging & exminations you need to be showing the inflammation you're trying to suppress with the NSAID. The same applies for any pain relief if you're taking any.

    Ask away if there's anything you've not read or have any specific questions.

  • Hi nmh - no I have been referred by my GP. When I first went to the surgery, they sent me for blood tests but when the office telephoned me back they told me that the results didn't suggest RA. So I thought I was just a bit stiff and soldiered on for a couple of weeks before I thought - 'hang on, this is ridiculous'. Went back, saw a different doctor and they agreed to refer me. I am guessing they won't diagnose me on the visit? Will it be more blood tests? Any medication offered immediately because nurofen doesn't seem to be having any effect. One thing I don't really know what to do is with work. At the moment I keep going sick, going back to work, going sick - the main problem is the commute - I take 2 buses and it is about 90 minutes - sometimes on my feet. I am knackered by the time I get there most days. Working from home not really an option in my job.

  • The problem with going, sick returning and going off again is that you will trigger your company attendance procedures, so take care.

    Jacqui

  • Right, I would think then the second GP had a look at your bloods & considered differently. Didn't suggest is Practice speak for unsure, you should have been asked to make an appointment to be seen to discuss them., this is maybe why the second GP referred you, that & understanding all you'll have told him & alerted him to something inflammatory going on?

    It depends whether you're diagnosed at your initial consultation, some are some aren't. I was but I was diagnosed abroad in a Diagnostic Clinic, before I saw a Rheumy 3 months later, it meant I could be on my meds before I saw my Consultant & he repeated bloods, urine, imaging & I had another full examination & he tweeked my meds the clinic prescribed. Here in the UK much depends on how the Rheumy likes to work & how you present, some want all test results in before diagnosing & starting treatment others will diagnose, start treatment & amend diagnosis if necessary once all results are in. So there's no hard & fast rule but if needed you won't be left struggling you'll probably be offered a steroid injection whilst you wait for your follow-up appointment. Nurofen is ibuprofen & whilst good for inflammation it probably won't work so well on the sort of inflammation you get with RD with no other supportive meds. I'd ask your GP if he'll prescribe something a little more helpful, maybe pain relief as well, though do keep in mind to stop it/them a few days before your Rheumy appointment.

    Others will be better placed to suggest about work but I would think once you have a more appropriate NSAID you'll find things that much easier. The travelling isn't really ideal though is it but if you've no alternative I'm not sure what I can suggest, sorry.

  • All good advice thank you. I have had the good fortune to have lead quite a healthy life so I have always taken what a medical professional told me at face value. I will of course continue to take the advice but I plan to be more robust when I don't agree or would like to try a different course. I take it that, if prescribed, DMARDs don't work straight away?

  • I think you'll do well, just be sure to listen to the advice your Rheumy gives you, if you feel you'd like to research an offered med then do so. You'll be given a leaflet on whichever DMARD it's recommended you start on but generally he'll know what will be best, certainly initially, it's his Speciality after all! All of the DMARDs take time to work, usually around the 12 week mark but sometimes it can be earlier or later it's just a guideline. This is where steroids are helpful, they'll work on the inflammation & in turn the pain whilst waiting for the DMARD(s) to take over (sometimes double or triple therapy is used, this is where two or three DMARDs are prescribed). Your body will determine your treatment plan, how you respond but often you have a choice of which meds you'd prefer, though I recommend you be guided initially, you need to form a good relationship with your Rheumy. Lots of info on NRAS website nras.org.uk, a good start would be working from this page, relevant to you just now nras.org.uk/the-inflammator..., ARUK also have lots of good info arthritisresearchuk.org

  • Thank you so much. Whilst I wish none of us have this, it is comforting to know I'm not alone.

  • Hi Rob

    Welcome👍

    There are 200 types of arthritis and many are cared for by a rheumatologist team so roll on the 16th eh to find out more.

    I was tested For RA from age 13 onwards but not diagnosed until I was 26. Back then Doctors didn't diagnose RA if your Rheumatoid Factor was negative which is now not the case. It took a good few years for it to change.

    Dmards do take up to 12 weeks to work but not always, we are all very different.

    Re work you might want to consider going on sick until you feel well enough to travel. Once diagnosed you may be protected by the Equality Act.

    Come back to us anytime!

    Take care

    Kikidee lili

  • Welcome to the wonderful world of RA!

    Formal diagnosis isn't straightforward. Some people have RF factor but not RA, some people have RA but not RF factor. Your Rheumy will look at a range of symptoms and test results.

    Everyone is different, symptoms change - for example I've never had problems with my elbows, but I am having problems now.

    Although RA is horrible there is light at the end of the tunnel. DMARDs will help. Nothing happens fast though and it will take time and trial and error to find the right 'cocktail' for you - but remission is possible. I was diagnosed about 3 1/2 years ago and have enjoyed two prolonged periods of remission where I have felt pretty good, pretty normal.

    It is important to manage RA in order to minimise damage in the longer term - it's good you have started on that path.

    It might seem like it but you won't always feel this bad. Hang on in there, listen to the experts, ask lots of questions and most importantly hang on to the idea that it won't always be this horrendous.

    I think the hardest thing I found was but knowing how RA will progress in the future, how will it affect me in 2 years, 5 years, 19 years. I try not to think too far ahead. I do lots when I feel good, and not a lot if I don't feel good.

    I have put my faith in the experts, I ask questions, do as I'm told, have made some adjustments both mentally and physically and have managed to learn to live a good life, albeit with Mr RA as a bed partner.

    You are not alone. This place is fabulous - I thank the day I found it - so many caring, lovely, informative and supportive people 😀

  • Socks, those damned socks!

    Corners of fitted sheets too!

    Such daily joy😂😂😂

    Welcome rob and good luck with your referral.

    M x

  • I agree to corners of fitted sheets - really frustrating!

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