Newly diagnosed

Hi lovely people. I've just joined the community because I'm having a bad day coming to terms with the likely diagnosis of RA.

I only had the results of a blood test last Friday so I know it's early days, but I feel like the rug has been pulled from under my feet.

I have a rheumatoid factor of 170, although ESR & CRP were normal (I had no physical symptoms on the day of the blood test). I have no idea how the RF score relates to other patients, but my GP seemed quite alarmed. I hope to see a Rheumatologist within a few weeks.

Although I have no current joint inflammation (not for about 2 weeks) I suddenly feel extraordinarily fatigued & can't work out whether it's real or psychosomatic! I'm usually a very active person & wouldn't normally sit & rest until the evening. Today particularly I feel absolutely pooped with lead weights in my legs!

I'm overthinking my future & feeling pretty low at the moment, so I guess I'm reaching out for a little support from people that have far more experience, understanding & acceptance of RA than I currently do!

I hope everyone is feeling well & enjoying the weekend. x

18 Replies

oldestnewest
  • I was diagnosed about a month ago with psoriatic arthritis-lots of similarities with RA. Can't give you any words of wisdom as I'm sort of in the same boat with worrying about the future and what this might mean. I think it's an awkward phase as it takes a while to get meds sorted and for them to start working so in lots of ways it's the worst bit! Just wanted to let you know I understand how you're feeling xx

  • Bless you Rachfaul! How are you coping?

  • You sort of hit the nail on the head with "I'm overthinking my future...". I did exactly the same of course, but with hindsight I realise it didn't help!

    RF of 170 isn't off the scale, and can mean precisely nothing. Many people have positive RF for unknown reasons and never go on to develop inflammatory arthritis. But fatigue is a bit of a hint. Anyway, try to take comfort in the fact that if you do have an inflammatory disease then it's been picked up very early which tends to give best long term outcomes.

    The best thing you can do for yourself right now is look after yourself. It can make a huge difference. So sleeping, exercising, not smoking, being at the right weight, and eating well can bring huge benefits. There is a small piece of research that says that doing that before major symptoms emerge can keep things under control. Oh, and avoid stress!

    I've had RA for 6+ years now, and am absolutely fine and living pretty normally. So it can be manageable. Try to stay off Dr Google and the horror stories.

  • Thank you helixhelix. I'm grateful for your reassurance & advice. I have much to learn!

    I've had increasingly frequent short-lived bouts of acutely painful & inflamed joints for about 3 years. Each episode only lasts 1-3 days & I perhaps foolishly thought it was perimenopausal symptoms (changes are apparent in that department too).

    Over the last couple of months the episodes of pain were reaching such a peak (a different joint affected every couple of days), I decided I needed to get it investigated. I should've done it sooner I know!

    The fatigue has only consciously hit me this week, since seeing my GP, although on reflection I can see my energy levels have not been as I would normally enjoy for the last 2 or 3 months... that corresponded with a relationship breakup so I put it down to feeling a bit blue & lonely.

    Thinking about my future is largely because I am a physiotherapist and use my hands to treat patients every day. Thankfully so far there have only been a couple of days that hand & wrist pain has restricted what I can do at work. My symptoms have generally started in the evening (after or towards the end of working days) & on first waking for 2-3 hours (until ibuprofen & codydramol has taken effect). I'm lucky I don't start work until 11am ... on bad days it's agony just to wash my own hands let alone apply manual therapy to a patient early in the morning!

    The other consideration for me is that the clinic I've worked at for 10 years has just lost a substantial NHS contract, so there will not be enough work for me to continue there from July. I am self employed & single with a large mortgage so the financial concerns are very real... & finding local work with similar timings (starting late morning) & an understanding boss is my next challenge!

    I can't deny I am feeling rather overwhelmed with the combination of factors in recent months... with the sadness of relationship breakup & consequent lonliness, imminent changes in my working life, financial concerns, assisting my darling but exquisitely nervous rescue dog through a slow & complicated recovery from major surgery since January, the ongoing sadness of losing my Mum to dementia, trying to support my poor 92 year old Dad as her carer, and now feeling vulnerable & frightened about my own physical health & capabilities.

    Sorry for sounding negative.. I'm usually such a positive capable & active person so this is an unusual bad time emotionally for me, & I know the cloud will lift with a new day!

  • Well it sounds like you have a history of being strong, so you'll find that again in time. Menopause + stress + genetic predisposition does seem to be a common trigger for inflammatory diseases. I know it was for me (two parents in law with dementia and dying mother, and job turning hellish).

    If you do have one of these chronic diseases then it is a major life change, but do believe that you'll cope as for the vast majority of us it can be controlled. And you have a major plus being a physiotherapist as keeping yourself in good shape makes a huge difference, and you'll know how to support your joints.

    But don't try to be superwoman. This is a shock, and takes time to get through it. So don't beat yourself up about being a bit negative right now. And the fatigue can be a nightmare, so don't push it. The clouds will lift.

  • Mwah! Thank you :) x

  • Undo like the stress in your life may have triggered an onset. Life is so hectic these days with children who keep coming back to parenting your parents, all on your own. Feel free to vent anytime.

    If you have moderate to severe RD (RA), you will definitely be looking for a new career. There are days when walking from one room to another is impossible but hands have many joints and is often the most affected area. There are many levels of affectivity, so wait for Rheumatologist.

    Also more sensitive test now available.

  • Hi and welcome to our little group

    Just reading your post reminded me of when I was first diagnosed.....getting on for 4 years now. It is a shock to think you may have a long term condition.....I just couldn't get my head round it and kept thinking it must be something else and it will go away! I guess I did what we all do, googled alsorts and scared myself silly. Finding this site was the best thing I did, and reading about those who have got on with their lives and are managing to live ok with this condition made me feel better about the future.

    I'm fortunate in that now I am in that position, a shed load of drugs, but I'm working and exercising and feeling fine again.

    If it does turn out to be inflammatory arthritis, then the prognosis these days is a world away from what it used to be.

    Remember when reading posts on here that most people post because they are struggling with something. Most people are fine most of the time and you will be too.

    Good luck

  • Mwah! Thank you :) x

  • Thank you for the reminder that most people are fine most of the time. I'm a newly diagnosed RA gal who is struggling about half of the time.

    Question- I'm not in remission yet, can I expect pain in my hands and wrists all of the time or just until my meds get set?

  • Hi

    I've never been told I'm in remission. I still get little flares in joints from time to time, but nothing like it was and easily managed with a couple of anti inflammatories. I am mostly not in pain now, once the drugs kicked in my inflammation was reduced and the pain with it. So your pain should go once your drugs kick in.

    Some people though will continue to have pain if they already have joint damage or OA.

    Good luck,hope you are soon pain free.

  • Once your meds take, the pain should lessen, however you may experience other area of pain

  • Boy , oh boy, if it doesn't rain it pours! Hurtling piles of the unseen " STRESS!!"

    There is support from agencies to help with practical issues like ESA / interest assistance on your mortgage . Get ES

  • Morning QuiteFrankey,

    First of all welcome, I only joined myself quite recently.

    The RF Factor alone is not a brilliant indicator, as you can imagine it's like piecing a jigsaw of blood results together. If there is a positive result of RA go on how you feel now and not get too ahead of yourself. As you say, you are showing no signs of inflammation etc.

    I was diagnosed in 2004 aged 42 and it was full on for me, but that does not go for everyone. My hubby can you believe it was diagnosed sometime around 2012 aged 62 with a little swelling in his fingers, he was prescribed Methotrexate a disease modifying drug and within a month his inflammation had gone. Five years later you wouldn't know hubby had RA even though he had a double hip replacement two years ago which was not due to RA, he was in hospital for a week and upon his discharge he was literally cooking, feeding and bed bathing me for a month as I had then slipped a disc. You see we are all different.

    If there is a positive diagnosis of RA I completely understand the mixed emotions as I struggled with them all for quite a while...Worry, anger, frustration, why me? why not me? what? when? who? These are all normal reactions and as a forty year PMT sufferer I can suggest the method I use for that to try and cope. I tell myself that the negative emotions will pass, just look towards the end of the tunnel because it does come through talk, forums like this, exercise albeit limited, good diet and I find a really important one...keep your mind active with anything but RA. The emotions do still catch me out from time to time throughout this journey but you will find a new you and be amazed by how you adapt.

    For me I have always had to have control of my own life and I find that talking openly with my consultant and accepting his guidance whilst regaining control helped more than I could have ever imagined. I think I fought against it for so long but in time accepted that this is another chapter of my life and as with most challenges come lessons and enlightenment.

    Take care and gentle hugs. X

  • Hi and welcome to this wonderful place. I don't post that much, but read posts every day and have found it the most supportive, informative, friendly place ever.

    I was diagnosed with RA almost four years ago, and understand the turmoil you must be going through. I was all sorts of things - scared, confused, in pain, all over the place really. RA runs in my mothers side of the family and I have a couple of aunties who became very deformed and disabled in their early forties. I could only see that for my future too.

    BUT - I had a serious talk with myself, and tried not to think about what I couldn't do but focus on all the things I could do. I have a big mortgage, a very busy stressful job and was in a bad relationship.

    I havent seen my remaining family for many years - I'm on my own. I have fab friends, but I don't like to bother them with my worries and concerns.

    Here I am now - feeling good, feeling positive, feeling resilient, feeling strong.. My relationship ended, I have reduced my hours at work and I have learned to be kind to myself and rest when I need to. I can just about manage financially, manage most of the house chores, DIY and gardening.

    I know I will have poopy times again, that's part of this journey, but I do everything I can to help myself - take my drugs, lost weight, exercise daily whether it hurts or not, and try to avoid stress.

    I have just come back from a week holidaying on my own in Penzance - I never dreamed I could do that kind of thing on my own but I did and I loved every minute.

    Life will never be the same - it will be different for sure.

    What I have found though is that I really appreciate when I feel almost normal - something I used to take for granted. I feel a stronger, more self reliant person. I have coped with a lot and know whatever life throws my way I will deal with.

    Keep positive, keep smiling, life (albeit slightly modified) goes on but just different.

    Big hugs to you xx

  • Hi, please don't feel like your future is bleak. I was diagnosed 4 months ago am 31 and positive CCP and RA factor and all very high. Struggled to use my hands and, feet, knees, back, shoulders and neck was in agony. I'm quite stubborn and don't like things getting better of me so took diagnosis not too bad but I said to myself I won't let it rule my life. Am on cocktail of drugs and used to find it crippling doing anything simple. Today I climbed a very very steep hill (more like mount snowdon lol) was achy but I managed it. I swang on monkey bars, on balance beams, swinging tyres the lot! Felt like a kid again. Then got back and took my dog for an hour walk. I am a bit achy in foot, knees and hands and bit swollen but still can use them. Before even looking at a hill I wouldn't be able to do it! What am trying to say in a nutshell is please don't think life goes downhill from here! Once on right drugs can do things and live a normal life. I had such a great day and a laugh and like I said although very achy it hasn't caused me to not be able to use my limbs which what like before. There is hope :) had a great day today, so much fun and I did it :) you can too!!

  • Thank you everyone.. You are all very kind.

    Had my first lie-in for weeks & woke up feeling brighter this morning, Had a lovely day pottering gently in the garden ☉ which always cheers my soul!

    Hope you've all had a good weekend x

  • Hi and welcome to our forum,

    Don't read to much in your gp seeming alarmed about your blood tests, I was diagnosed in 2002 with RA, within 4 weeks of pain and weaknesses I could hardly move my right arm, gp said I had pulled a muscle 6 weeks later I couldn't walk up stairs and my 15 year old son was helping me to dress in the morning. I saw another gp who straight away put me on steroids and refered me to a rheumatologist.

    I was diagnosed with rheumatoid arthritis within a month but I am rheumatoid negative regarding blood tests so as other's have said your blood isn't the only thing to take into account, you can have high readings and no inflammation or like me the opposite. Once of the steroids it took about two years to sort out the right meds for me, but that wasn't two years of constant pain and I carried on working. Some medication I tried had awful side affects especially sickness and upset stomach, if any meds make you feel ill after giving them a try don't suffer, tell your rheumatologist or specialist nurse ( most people have a help line to a support rheumy nurse team) as there are lot's of different meds to try until you find the right one's.

    I have been on anti TNF injections (self inject ) Embrel for 13 year's now, and they gave me my life back. I was able to carry on working until last December and raise my daughter who was only 2 when I was diagnosed. It's only been this last couple of years that I have had secondary conditions diagnosed connected with RA but, not everyone develops other illnesses.

    You have been given some great advice on here and I can only back that up by saying yes make sure you have a good healthy diet, ( still treating yourself though ), exercise though you may have to change the way you do that to suit your body, like Tara I walk our dog even if it is more slowly now! And if and when you need to rest and pace yourself.

    Unfortunately you can't get rid of your RA but, you can live with it. Take care Linda.

You may also like...