Feel a bit on my own with this

I was told over a year ago I have reactive arthritis. Doc says from a viral threat infection.

My fingers and toes are deformed. My thumbs are now going the same way. Recently acquired painful elbows and my knees and thighs are causing pain. I take ibuprofen, which helps.

Hard to sleep, every time I turn over the pain wakes me.

Stiff four a couple of hours every morning. And because I have an office based job, sitting at the desk, when I get up it's hard to move and walk.

Should I go back to GP or just get on with it.

I also get a temp and feel unwell when it gets worse.

Tired and fed. I realise it's not r.a. But feel as though it's so hard just doing the day to day.

Blood tests a while ago showed no inflamation. Doesn't make sense as various joints hurt most of the time.

Just feeling frustrated and a bit fed up.

Dix

22 Replies

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  • My blood test show my RA is inactive,but i am in constant pain in my fingers and toes and my consultant said yesterday it was fibro flare that was giving me a good kicking. So he has given me two weeks of steroids. i go back then and see how i am. Go and see your dr and see what they can do to ease your symptoms darling. Sending gentle hugs.xxxxx

  • Hi Dix, first thing you are not on your own, the genuine care, compassion, kindness, support and understanding i have had since joining this site has made even the darkest moments brighter and is as good a therapy as i have come across and i think its probably the understanding that makes the huge difference, i have had plenty of "there there" voiced at me by well meaning people since becoming an RA victim, but often that is something to say because they dont understand what we are going through, to be fsir they cant really. But the kind folk here know what we are feeling and regardless of their position they hold out hands of support and gentle hugs and cups of tea from across the miles, those caring thoughts come with knowledge of what we are going through and they understand and never say "get on with it", they say "dont give up, we will help you", that is as good in my opinion as any steroid jab.

    Now the advice bit from a non medically qualified fellow sufferer, what you are describing sounds to me like the type and range of symptoms that are experienced with devoloping RA, i dont think the label that has been put on it makes much diffence. It seems to me that you are not happy with the treatment you are getting and my thoughts on reading your post are that you should definately ask for further investigation and consideration of your condition, how it is affecting you and the severity of the symptoms you are experiencing.

    I hope you get the further medical intervention that you so obviously need, meanwhile we are here. Remember, we never find out how strong we are until strength is the only thing left.

    Leon.

  • Wonderful answer Leon... I loved the visual in my head of the "there, there"...

  • Leon doffs cap and takes a deep bow

  • You're in the inflammatory arthritis wilderness Dix and I do feel for you, horrible to be experiencing all you describe without people understanding what, why and how awful you feel. Definitely go back to your GP and tell him/her how bad you feel. I would be demanding (yes, it can be done politely) to see your Rheumatology team, perhaps a specialist nurse because they have a bit more time than Consultants, and can escalate things if necessary. Maybe as Silvi says, some Prednisolone would ease your symptoms and allow you a glimpse of how life once was and can be again once you're stabilised on the right treatment. Emphasise that if this carries on you'll be unable to work and dependent on benefits - that usually gets 'em going! Let us know how you get on. You are not alone, most of us here know exactly what you're going through.

  • I'd definitely go back and insist on more tests and a referral.

  • Hi Dix

    Have you been referred to a Consultant Rheumatologist or is your GP managing your condition?

    If the latter......please get to your GP as soon as possible & ask for an urgent referral. If your GP queries this....summon up all your strength & insist.

    RD of any sort needs specialist treatment ....the sooner the better.

    I know it's difficult if a GP resists referring you....but think of the worst pain you have & get that referral,

    Good Luck....let us all know how you get on.....

    AC

  • I would definitely go back to see your GP and insist on a referral to see a specialist. Don't suffer in silence. x

  • Meant to say that all my blood tests came back almost normal yet I was in so much pain. My best advice would be just keep going back to your GP. Let them know it's not some minor thing, and that it's having a real impact on your ability to function and carry out daily life tasks. And just INSIST on a specialist referral.

  • I'll echo what the others have said, Dizzy. It's not fair to be suffering like that. It sounds like the symptoms I first had before I was diagnosed with RA, even though I know your tests came back negative.

    Insist on a referral to a rheumatologist, he or she will have a specialist nurse team who will support you. You need that support especially as you are showing visible symptoms in your joints and stiffness.

    Good luck, please let us know how you get on.

    Ally x

  • Go back to the doctors you need more help 🌹

  • Hey there, Dizzy , that could have been me writing , so in the same boat x . The only difference that after several bouts of being off work my Occupational health wrote a letter requesting more specific blood tests and referall to Rheumy's so my GP has now obliged . Still waiting for appointment tho.. and yes, inflammatory markers are not showing anything either... so hope you are going back to GP to state your case as you are feeling so poorly xxxx

  • Yes, as everyone else has said, do go back to your GP and stress how much pain and stiffness you have and how it's affecting you.

    'Putting up with it' isn't an option until it's been fully investigated and different treatments tried by a rheumatologist.

    Hang in there, with the right treatment you could very well feel a lot better, so don't settle for fob-off from the GP.

    Best of luck to you xxx

  • Yes definitely go back to your go, nobody should have to suffer like you are plus if you have RA then you need treatment to try and contain the disease good luck xxx

  • Hi, have read your post with interest as I too was diagnosed with reactive arthritis eighteen months ago and with some ups and downs seems to be romping through my joints. Knees, hands and wrists, ankles and shoulders are all affected.

    I think as reactive arthritis normally settles within 12 months it is a bit of a waiting game, however I have been seen by rheumatology who have now diagnosed inflamatory arthritis and started me on sulfas alanine.

    I do understand that you are feeling isolated and a little afraid, I do too, in fact this is the first time I have had the nerve to post on this site.

    Feel you need the support of ruematology team, good luck and let us know how you get on.

  • What's in a name? It's all part of the auto-immune family of illnesses. You need help, get back to the doctors.

  • Hi Dix. We cab all, everyone of us, relate to what you are going through. We have all pretty much been through it.

    Just my 2 cents or pence ;-), but I would definitely not give up and just tolerate it. You need meds and that should include pain control. You (and all of us for that matter) have the right to a life... and it is hard to live that life if you can't move or can't move without excruciating pain. Yes, I would go back to the GP and look for a rheumy referral or however it works in the UK.. The NRAS administrators can help you with this...

  • Hi Dizzy, I am sorry you are feeling so much pain. I have rheumatoid disease (it's not really an arthritis) and my regular doctor didn't pick up on it. It was just your routine blood work so he chalked it up to osteo arthritis in my knees. When I started experiencing pain in my hands and wrists and other parts of my body on a daily basis I looked up my symptoms and I had a lot of the benchmarks for RD. Went to rheumatologist, did blood work for her and she confirmed it, aggressive RD. That was 5 months ago. I was given prednilisone for a week to calm everything down and then started on methotrexate tablets, meloxicam and folic acid. I had cut my hours at work to only 15 a week and now it seems I am in remission and am trying to get my hours back. Go to a rheumatologist, I think they look for different things than a regular doctor. Good luck, hang in there and continue reading this sight, it's very informative, lots of advice and genuinely caring people.

  • Hi there. My.better half was originally diagnosed with reactive arthritis but then RA due to inflammation levels. We reckon a virus first set it off. The consultant said to us that whether it did or not it would have developed into RA within 18 months anyway. Just to be aware and I hope not for you xx

  • thank you, everyone, for taking the time.

    I think what I might do, is make an appointment. My GP is on holiday at the moment. And in the meantime, keep a diary of symptoms and pain medication I'm using. Then I can refer to it.

    I really appreciate the support.

    I will let you know how things go.

    Thanks again

    Diz

  • Just a thought - might it be better if you actually saw a different GP?

    A different one might review your case and refer you to a Rheumy? Maybe use the fact your own GP is away to your advantage.

    I know in the past I have been with a GP for a long time and when I changed the new one looked at me afresh and I followed a different treatment plan.

    Good luck and I hope you find some respite from your symptoms very soon x

  • I have similar symptoms. My RF levels are apparently high, but other tests low and show no inflammation, although my fingers and toes say otherwise. I am waiting for an appointment with an RA consultant. I would go back to your GP and ask for help. I too have an office based job and have to get up and go for a quick stroll every hour or so which helps. I too have the same issue when it comes to sleeping and have found that high dose cocodamol helps.

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