Apprehensive

Hi All

This is fist time I've posted here, I don't have a confirmed diagnosis yet but my first hospital appointment with Rheumatologist is on Wed 1st Feb.... I'm abit unsure what to expect.

I think I'm in something like a flare up as I've been in terrible pain for a couple of months... feet, hands, shoulders and elbows.. I am currently taking 500mg Naproxen twice a day with paracetamol in between... blood test from GP was pasituve for Rhematoid Factor, but I don't know what that means. I should also mention these symptoms have been off and on for quite a while i.e. Pain in feet or hands etc but never all together like this... that is why I went to GP to ask if it maybe RA.

I'm quite scared for what the future might be... I'm 54 and work full time been struggling these past couple months....

Any advice most welcome

Thanks

Sue

18 Replies

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  • Hi Sue, I was diagnosed with RD at age 54 and I too was quite afraid. Being a chronic disease I went through a 'grieving' process which lasted about two years (there were other stressfull things going on in my life during this time too which did not help).

    For me accepting the diagnosis was the hardest part, it being a chronic disease. I am careful with what I eat, try to avoid stressful situations and after not tolerating three DMARDs, I started on a biologic three weeks ago. My RD is still there but my symptoms are not as bad as they were.

    Be kind to yourself and pace yourself.

    X

  • Hi

    I was in a similar situation to you last summer although hadn't been prescribed Naproxen so was surviving on ibuprofen and paracetamol. I'm 45 and work 4 days a week in a stressful job and have a 9 year old to look after. Anyway, the rheumatologist will probably ask you lots of questions, look at and feel your joints to spot inflammation and identify where the pain is. They will then probably order some more blood tests including an anti-CCP which is one of the best markers of whether or not you have RA. Rheumatoid factor can be present in those with or without RA so is confusing but if you have tested positive for it it sounds like you are on the way to a diagnosis. It is also possible that the rheumatologist will give you a steroid injection which will give you some relief from the pain and stiffness while you wait for the blood test results, final diagnosis and getting prescribed drugs. The rheumatologist may also send you for X-rays on your hands, feet and lungs to see if any damage can be seen as this is a long term result of untreated RA. Try not to worry; in my case there was no damage spotted, the steroid injection gave real relief for 4-5 weeks and the drugs are working for me with only very minor side effects. Seeing the rheumatologist was the beginning of getting my RA under control and getting my life back. Good luck!

  • Hi Sue, welcome to the forum, im glad you have bitten the bullet and at least asked for help, i have only had 1 Rheumy and he is very good and very direct which suits me fine, he will tell you straight what you are dealing with, what he can help with and what as he says you have to just get on with. Im really sorry you have started down this route but it sounds like you have a deceloping situation. You may only see a consultant briefly and spend most of your time being assessed by a specialist nurse who will do the donkey work and then move on from there, they will likely do a das 28 assessment which is a recognised scale indicator of what is going on with your joints, he may also request xrays of hands and chest. I admire you for continueing to work and being positive and continueing to do what you can is important but as a "bloody minded i wont be besten tough guy" i took on RA head on and tried to push myself through bad episodes, big mistake and dont do it, no matter what encouragement you receive about continueing exercise dont try shoving against a flaring joint, you wont win, rest and respect are the best answer. You didnt say what you do or what your employer is like but you seem like someone with a great work ethic, do your best to be honest with them it is the only way to nove forward long term.

    Hopefully your appointment will leave you better informed with a managdable programme to help you cope with this awful disease, many people respond well to therapy and cope very well. However it hoes for you this forum is a great place for information and inspiration from lovely people. Very biggest hugs. Leon

    Blessings

  • Hi Stats12

    I was diagnosed a year ago at 55

    I am sure I had RA for sometime but symptoms came and went.

    I saw a physio privately in 2010 who thought I may have carpal tunnel. I found carpal tunnel is a family thing as I had a brother and sister with a similar problem and my brother was waiting for surgery.

    Eventually after 8 months was referred to a rheumatologist who confirmed I had RA.

    My RF was normal but anti CCPwas high. From what I understand this is specific to RA.

    Started methotrexate initially, had Hydroxychloroquin and added sulfalazine Recently.

    It does sound like you may have something going on.

    Wish you all the with your appointment

    Matilda

  • Hi Sue and welcome to the forum what I would say is take someone with you if you can and also take a note off things because there's that many things going round in your head that you will forget some off the things you were told also jot down any questions you want to ask, it is a lot to take in I'm 51 and had to retire medically last July and it took me a year to come to terms with it as I've had RA,OA and angina since 2014 good luck xxx

  • Hello Sue, I hope your first rheumy meeting will be positive. In my own experience it helps a lot if you are well prepared. Make a list with all your questions and don't leave the consulting room before you are satisfied that you know what's going on and how you can go forward. If you are uncertain what to ask, have a look at the NRAS website (one link is nras.org.uk/meeting-the-rhe... I phoned their helpline and was given valuable information to prepare for my first appointment. Good luck and all the very best. Please give us an update.

  • Hi Sue

    Welcome to the group, everyone is so supportive on here and it's a big comfort.

    I'm 54 too and was diagnosed with RA at 49, having had pretty much the same experience and symptoms as you are. My rheumatologist and his specialist nurses have been amazing, very thorough as the other posts above have said. You'll have more blood tests and a chest x-ray and probably hands and feet too if your symptoms are there. I had knees x-rayed too! Once you have a confirmed diagnosis they will talk about medication options. I started with salazopyrin which worked for 5 years, then I had to add in methotrexate, both of which have been absolutely fine, not much in the way of side effects. I lead a normal active family and working life and people don't know I have RA unless I tell them.

    Wishing you all the best. It can be a shock to get a confirmed diagnosis, certainly was for me. So be kind to yourself and make sure you get plenty of rest when you need it. We are all here for you.

    Ally x

  • Welcome to our not so exclusive club Sue! Very sorry to hear how you are feeling and others have given you great advice so all I would add is, if you arm yourself with info, prioritise yourself and find a good rheumatology team, life with RA - especially nowadays - can be full and joints can be relatively comfortable if not pain-free. It's challenging at times but not all doom and gloom. And when it's tough you've got all of us to have to moan at! Take care.

  • ....I meant, you've got all of us to have a moan at!

  • So appreciate all the great comments as moving forward as a mom of a Son 27 who has RA(ankolosing Sponditis ) is encouraged that he will hopefully will be able to have a future in working and being able to do things. There will be flares and so forth, but sounds like having this form and a good rheumatoid DR. will make it a little easier.

  • Hello... I'm not sure if I'm even eligible to comment on here yet as I have not had a diagnosis but wondered if anyone had any opinions or advice. I have crippling pain in both my shoulders, moderate pain for 18 months but truly hideous this last week. Saw a new GP (hadn't even registered with a doctor in my new town for 6 months), he suspects RA so prescribed Naproxen immediately. Had X-rays and blood tests yesterday and seeing GP again on Friday. However, on way to work (work full time in school) I cried all the way as I'd woken at 4am as usual to be able to leave house at 6am and I was stiff to the point of paralysed and chronic shoulder blade pain that made me shallow breathe. Driving was terrible. I rang surgery, duty doc called me and saw me at 4pm... he was not at all sympathetic and gave me prescription for steroid tablets (prednisolone). I have regular bouts of sinusitis, chilblain type symptoms with my feet, cold/flu symptoms that don't result in a cold or flu and feeling lethargic and detached... struggling to keep putting in 10 hour days at work and staying positive! Any thoughts? RA or otherwise? I'm otherwise a very positive, vegetarian, happy individual... but the pain in my shoulders and other discomforts are making me SO miserable, especially in the morning!! Thank you for reading! 🤕🤗

  • So your test results are not back yet and there is no certinty that it would be RA. I had frozen shoulders at one point in my life, way before RA and it was really painful so I can understand your anguish:(. If shoulder pain is your only symptom it may very well be something else than RA.Hoping for the best😊

  • Good Morning, thank you for your response. I have other symptoms; regular sinusitis, flu and colds that don't fully develop, recurring septic finger, aches and pains that I never associated with anything... fatigue, blurred vision. I'm having my first day off work today in years as I'm too bad to get up... been awake most of the night, burning up?! Frozen shoulders would be a great relief! Thank you again Simba and have a great day!

  • Sounds awful. It is evident anyways that your body is quite stressed out and that your immune system is not working properly. It also sounds like you have adrenal fatigue. I would start by boosting your immune system. A diet without sugar, gluten and dairy, lots of vegetables and clean water, colostrum powder one scoop every morning, can get from amazon, D3(5000iu or more/ day), very important for fighting infections. Vit. K2 for the absorption of. vit. D3. Vit.C 2000-3000mg daily.Bvit. complex,B6 important. vit.A 25000iu/day. Magnesium malate, zinc. Cook ginger and drink as tea through the day. A good probiotic. There are good supplements for adrenal fatigue to by on line. And I do hope you can take sick leave for some time to minimize stress! I am quite sure you will feel much better after three weeks if you follow these instructions😊As for your shoulders if they are frozen, it will take some time to heal. Some take cortisone shuts, they help for some, some wait a year when they just heal. I got a very effective excersize program from my doctor and got rid of my pain in three weeks. All the best to you and good luck😊

  • Hiya Sue, welcome. Firstly please don't be scared for the future, though at this point in what does sound like flare & with no diagnosis or appropriate meds I can fully understand why you would be! With the meds these days give it a good few months you should really see improvement in symptoms, maybe even remission, that's the plan anyhow!

    Your Rheumy appointment will determine just what's going on, more bloods, examination & imaging will likely done initially & hopefully you should have a firm diagnosis then or at your second appointment. This link explains more fully nras.org.uk/1-recognising-s... The first step & the following 5 should give you plenty of info from understanding what's going on, what happens at your first Rheumy appointment right through to comorbidities. I'd recommend you have someone close accompany you, two heads are better than one when recounting what was talked about, there's much to take in. If you've any questions or something you're not clear on just ask, we'll help where we can.

    If I can suggest one thing, though you'll probably think I'm mad, think about not taking your Naproxen & paracetamol a few days before the 1st Feb appointment. This is what my GP suggested I did, the reason being your Rheumy needs to see you at your best worst if that makes sense? He/she needs to have reliable baseline bloods, imaging etc to make a proper diagnosis, recommend which treatment & doses will best help, to do that any inflammation & pain shouldn't really be masked by an NSAID or pain relief.

    I hope your appointment goes well. Let us know what happened won't you?

  • Hi Sue, hope it went well today.

  • Hi Jefflin

    I haven't been yet... my appointment is at 3.45pm this afternoon, I'm leaving work at 2pm and my partner is going to go with me... fingers crossed it goes well... I'll update later.

    x

  • Hi all

    I'm new here too and had my first appointment yesterday.........diagnosed and plans to see the nurse in a couple of weeks to start methotrexate. Madly reading everything I can at the moment and trying to be positive! Would be really good to hear how other newbies progress............i have loads of questions.......

    Sue, hope your appointment went ok x

    Vicki

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