RA

Hi, i was diagnosed with RA last wednesday after 12 months of pain, i have had 5 falls firstly causing pain in my foot, the next fall hurting my other foot, next fall my knees, next my wrists, each time i fell i couldnt stop myself falling to the floor, i was diagnosed with goute in my elbow, all these injuries not healing, i went to the doctor and explained that i felt as though i was breaking, for the first 2 hours in the morning i can hardly walk hold a cup, struggle to get out of the bath, once on my way to work in london i struggle to get out of my car and walk to the train, i shuffle, then im squashed on the train, i then struggle to get out of my seat putting my weight on my knees then on my feet, and shuffle my way into work, which is about 20 mins walk, by 10 a.m. the pain has numbed and things start to get easier...

i have an appoointment with the specialist coming up and cant wait to get answers to my questions, ?

how long will this go on for

how long will i be able to work

how will i afford not to work

im very scarred, my dad was riddled with this desease, and was unable to carryout simple tasks in the end...

are these normal thoughts ??

8 Replies

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  • Welcome! First off, these thoughts are normal! We've all been in that scary place that you are now where the future seems a bit grim and frightening. It sounds as if it's your GP who has diagnosed you, so you will learn a lot more from the specialist rheumatologist and he or she will be able to tell you more about what stage you're at.

    There's a lot to take in at first, so I don't want to bury you in information but a couple of things to bear in mind

    - your Dad probably didn't get the treatment or drugs we get now, and things have moved on a lot. I could hardly walk when I was diagnosed and am now back to nearly normal. For most of us although this is incurable it is a manageable disease.

    - stick to looking up info on the good sites like NRAS.org.uk or NHS sites as there's some rubbish around which is not very reliable.

    - take things a bit at a time and try to look after yourself right now, lots of rest, good healthy food and sleep.

    it'll take a while to get things sorted, but you'll get there.

  • Hi CTrigss,

    helixhelix is right. Usually RA is diagnosed by a rheumatology consultant. Treatment for RA should it turn out to be that has improved tremendously and there are now very good drugs to treat the condition. I have put a link to our website for you to look at to find out more. If it does turn out to be RA then please feel free to call the helpline to talk in more depth about it. RA is a fluctuating condition and is different for everyone so some of the questions that you have asked will be difficult to answer but there is a lot of help and support out there for you:

    nras.org.uk/

    Helpline - 0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Hope this helps and I hope your appointment with the consultant goes well.

    Beverley (NRAS Helpline)

  • Hi thank you for that, the gp took blood test for rheumatoid and phoned me at work to say I have the decease I can't imagine a gp would say that unless totally sure?? As today has progressed both my feet and ankles have swollen and in a lot of pain in my right wrist along with my right shoulder joint it just seems to be popping up everywhere !!!

  • Hi

    there isn't a specific blood test for RA - just for things which can help inform a diagnosis along with your symptoms. Good though that the GP has got this testing done so that your rheumatologist will have all of that to hand the first time they see you.

    It is scary, but for me anyway, not knowing for sure is scarier than knowing. Hopefully the specialist will be able to give you some answers. If it is RA - everybody is different. There are no rules about how quickly it moves or how bad it gets. However, as others have said, there are lots of treatment options now that wouldn't have been available when your dad was diagnosed. I used to be a nurse (and continued to nurse with the disease.) I remember seeing people with badly damaged hands and feet in the early years of my career but that was incredibly rare by the time I left nursing.

    Hope you get an appropriate treatment plan going soon - that should help with some of the worry.

  • Hi I still haven't got my appointment through for the specialist, but going back to docs the last couple of days I have been in a lot of pain particularly my hands and wrists , my feet are a constant wearing off as day goes on. I have for the first time phoned in sick today it's all become too painfull not sure how work will see it, although I have told my manager I have RA when I showed her a painful lump with appeared only wrist full of pain she asked I'd I knocked it then commented on how the RA had taken off since I was diagnosed last Wednesday !! Made me feel she thought I was putting it on ??

  • Oh my, you have had a rough time & I really understand how rotten it is for you just now, believe me your experience isn't unusual, I particulary relate to shuffling around as it was my feet where I first noticed all was not well. Well, you're welcome here & I hope you find the answers to your questions though experiences may vary as the disease is variable but here talking to others it's great as we each understand how it is more than someone who doesn't live with the disease.

    You're going through the most difficult time, waiting for testing & a confirmed diagnosis from a Rheumatologist & having little med wise to help ease your pain & inflammation. It will get better, promise, not immediately but your symptoms will improve once you start your meds. The DMARDs can take a little while to build up & notice any difference but they are, the need time to reach their potential. As others have said it's likely your dad's Rheumy didn't have access to the meds we have nowadays, I know my nan had little other than brufen & ointment, & thankfully the gnarled hands & crippled bodies are a thing of the past.

    Do keep to the most reliable sites if you're reading up as there are quite a lot of unreliable sites out there, nras.org.uk is of course an excellent resource as is arthritisresearchuk.org. Of course we'll try to answer any questions as well so don't be shy, you won't ask anything we won't have seen before!

    One thing, when you do have your first Rheumy appointment try not to take any anti inflammatories or pain relief for a few days before, either prescribed or over the counter, as your Rheumy needs med free baselines to give a correct diagnosis & drug protocol & he/she will need to see any swelling which the NSAID may be dampening down, or pain relief easing the pain of course!

    Take care & let us know how your appointment goes..... of course in the meantime we're here if you need any help or have more questions leading up to your appointment. :)

  • You just helped me a lot by saying not to take anything for the pain and swelling. I am sitting with ice on me.. I have been in wraps and I am due to see the doctor in a few hours - without the ice and wraps -in about an hour I will look pretty normally swollen so doctor can see the problem.

    I would have took the ice wraps off immediately before doctor walked in the room giving him no idea.. duh, right? I am only thinking of my wrists and how much those babies hurt... I know, I have the wrapped right tight in ice here.. Thank you. =)

  • Sharing this info seems to have helped a few people here. Such a simple thing but often not realised. I can't take the credit though, it was my GP who told me to stop taking the anti inflammatory & pain relief she prescribed for me between the blood tests coming back positive & whilst waiting for my appointment at the diagnostic clinic.

    I hope your appointment goes well Karen & your Rheumy sees your inflammation at it's very best. x

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