First timer too

Hi, I have been reading flowerpot's introduction, and I am a newcomer too. I am 46, and diagnosed under two months ago. I am seronegative, and while I had the first flare up in 2010, it didn't last long and by the time I saw the consultant, it was over, so I didn't get a diagnosis. Now in hindsight, I have not been 100% "normal" since then, but without a diagnosis, I was very stupidly assuming that all my frequent aches and pains were just the normal part and parcel of getting old, and also perhaps due to my rather sedentary job and lifestyle. Then in March, I woke up one day that I could not move at all, and after that thanks to my husband's private insurance I was diagnosed in just two weeks. I was given a depo injection of steroids and put on MTX and Prednisolone, and my CRP levels started to come down. I was on sick leave for 8 weeks, but when I started back at work, I only lasted 4 days and I relapsed quite badly, so I am on sick leave again and worrying quite a lot about the future.

I don't want to write too much and bore everyone, but I will be coming here again, as I am also experiencing this illness as a game of snakes and ladders (great metaphor, by the way), and I have been extremely grateful for the excellent support from the NRAS helpline, and I know how important it is to have a support group to let steam off a bit and not ending in tears everyday you try to explain how you feel to your nearest and dearest.

Thanks for reading

20 Replies

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  • HI Teremazon and welcome .....

    everyone lets off steam on here and we are all in the same boat

    we all help each other as much as we can .. we all have good and bad and very bad days and no matter what time of the day theres always someone here ... i was diagnosed last march and was put on salaz first and then added MTX and was doing well till car accident and now i feel im going backwards ... but had rheumy app today and got all body steroid injection so fingers crossed i get some sort of relief

    debs x

  • Hi, thank you for introducing yourself. I also have fingers crossed for the second depo injection that I had yesterday to kick in ASAP. Hope you get better and start going forwards again soon.

    Tere

  • Bless you. It such a roller coaster. Hang in there and try not to stress as that will not help.

  • Hi,

    Welcome to the community, no one minds if you have a moan.

    Hopefully things will pick up for you soon.

    Look forward to getting to know you.

    Mary

  • A big warm welcome from me too :-) I look forward to getting to know you. I was diagnosed 2nd May so I'm relatively new to all this too. I was given a steroid injection and put on mtx, just moved up to 15mg last week. Hopefully things will improve for you soon as the medication kicks in and you'll be able to get back to work. I agree, it's lovely to have a place to talk openly about our feelings. Take care.

    Paula x

  • Hi and welcome! I was diagnosed in November - also took a while for me to get told it was RA. I am having a good spell - been on MTX for 6 months and hydroxy for 2 weeks and somehow and magically the RA has almost gone into hiding after a rocky ride with flare ups and non tolerance of MTX (liver). Seem

    Things have settled at last for me on 15mgs MTX and 400mg Hydroxychloraquine. Long may it last. Hope things settle down for you too soon as the drugs take effect - hang in there though it can take a while.Hope you will soon be as lucky as me! Tilda x

  • Hi, and welcome to the forum.

    I have found it such a lovely safe place to come and share my experience and gain insight into the ups and downs of RA.

    I am newly diagnosed too, and the advice I have had has helped so much.

    Just wish I had taken notice of all of it.....I got advice about work, and didn't listen, and now I regret my actions..but that's for another time, when I feel brave enough to talk about it lol.

    It's not just the physical things, it's the emotional roller coaster and the impact on relationships with family and friends that has a massive impact, for me anyway.

    Take care and keep coming back, even if you can't or don't feel like sharing stuff, it's still great to just come on and have a read.

    Nic x

  • Hi Teremazon

    Welcome to the site, the lovely thing about the forum is that there will always be someone who knows what you are going through. Also, if there is something that has been niggling you, it is almost certain that there will be a member of Health Unlocked who can answer your question or put you in the right direction. Hope you enjoy the support as much as I have. I also hope that you feel better soon. Wendy xx

  • Hi I am new here too, been asking questions and getting brill answers . Now i know i am not loosing it lol. Hope you feel at home here.

    take care carol

  • Hello all. I am newly diagnosed too. I am 40 and a Mummy of a gorgeous five year old boy. Feels such a relief to have found this site with such amazing people who understand exactly what having RA feels like. I am not taking any drugs at the moment but back at the hospital next week to try and sort it all out. I'm scared and feeling a bit lonely in all this. Ally xxx

  • Hi AllyMac ... welcome

    Once you get on ya meds hopefully things will look better for you ..

    your just scared about the unknown we were all the same ..when i first started on meds my head was upsidedown thinking do i wanna take them meds or not and then panicking wen taking them but it happens to us all ... you ave come to the right place to rant and moan and get a lot of answers that niggle you ..

    they are a great group of people on here

    debs x

  • Hi, Essexgirl, that was definitely one of my dilemmas too. At the beginning, when I was just trying to get my head around the enormity of the diagnosis and implications for my quality of life, and luckily I managed to get a bit beyond the initial "OMG, my life is over!", what has hit me is how difficult it is to get the balance right between taking enough drugs to send you into remission but with not too many side effects. They have kept telling me that the side effects will go away, but so far they haven't. I am trying a different attitude to them now. Luckily, apart from the constipation, the worst are not physical, but psychological, and since I am a Psychologist myself, I sure should be able to deal with them. I have become totally bi-polar. Tremendous mood swings, I'm manic and hyperactive one minute, with my mind racing at 4 am and having all these great ideas that suddenly are the most pressing thing in my world. And I take copious notes that the following morning don't make any sense! Then the next minute, like yesterday, I'm back to "my life is over!". So I after being scared and concerned about these symptoms, I have discussed fhem with a lot of colleagues, and I am sure now that I am not loosing my mind, it is due to the steroids. But the dilemma about the advantages and disadvantages of medication is a huge one, especially if your consultants don't feel the need to explain properly. For the time being, I've given my credit card to OH to hide, in case I get too manic with it!

    Teresa

  • hi and welcome,glad my introduction has inspired you to join us,its a great place to come, as you know i am also new here,but the help ,advice and the welcome is fantastic,i dont know why it took me so long to join?, anyway just wanted to say try not to stress to much as it doesnt help anything ,things always sort themselves out with time, just concentrate on trying to get better,and understand the whole situation, [am still working on this], and keep popping on for loads of support, look forward to talking again soon, sue x ps am going up the snake at the moment.

  • Thank you so much girls. Means so much. I'm trying to look into the condition too and wade through all the info. The society website is so helpful and the people on the helpline. Have a good day, fun in the sun! Ax

  • hi, sorry meant to say going up the ladder at moment,not down the snake, [not much sleep last night too warm] x

  • Many thanks everyone for introducing yourselves, and for the encouragement. Yesterday I was totally down in the dumps with the relapse now becoming another full flare up and my CRP levels back to square one. It took me two months to bring them down and a stomach bug (consultant thinks that was the reason), has put them back as high as they had been at the verey beginning.

    But I am glad that at least being like that made me restless and needing to reach out for some understanding, and therefore coming here and starting to

    get to know all of you going through the same.

    Counting my blessings often and keeping a gratitude diary keeps me going strong. After all, I am very lucky in so many other ways...........

    Teresa

  • Hi teremazone, gjad that you have been diagnosed.,sorry that it took so long . I too have been recently diagnosed. The site is a great way to share info, also good to let off steam. I was going to try and go back to work, but have been to in back. I have decided that my health, long term must take priority by occupational doctor, not to go back too soon. I was being harassed by my manager to go back next month. Decided his advice was what I needed. His support also was reassuring. Good luck..

  • Hi Teremazon, I have been here since last Nov, never have I known a more delightful, kind, thoughtful, understanding and more adjectives,group of people!

    I have had Psoriatic Arthritis for more than 30 years, and RA for about 15 now. So my disease advanced and destroyed during the time there were no goo d drugs like we have now. Now I am as good as it's going to get, and alot better than I used to be.

    I can see, you are not one who "will go quietly into that good night"!. Be assured, it is entirely possible to get to the point where RA doesnot have to enter into your mind every hour of the day. You can have a relatively normal lifestyle, just might have to make a few adaptations. Stick with us, come back often, you will be able to see others making advances also. All the best, Loretxx

  • Welcome, In sero negative and 47 , Eight weeks is quite usual when first diagnosed, it is important you get well before returning to work, make sure you have sick notes and then when you feel up to it a fit note.. returning on reduced hours and building up gradually helps too x

  • Hello and Welcome, I was diagnosed with RA in 1990, nothing was ever done with it back then, but last year it reared its ugly head in a worse way, and I also have Fibroyalga , I recently, last month began MTX and I also take Hydroxychloroquine and fluoxetine and Celecoxib as well as slow release pain meds, I recently started on this website, and I will say, When I have felt my worse, I get some really awesome feedback from some really wonderful people here, their suggestions, and understanding have meant so much, and I will keep coming here as This is where I find my relief in an otherwise feeling of despair, Glad to see That you also have found a place to come, You will find, yourself, after checking emails etc.. You will start checking this page, You'll see, Good luck and welcome again, Just a suggestion, You can click on any persons profile who replies to you, if you are inspired by their response to your situation, I have found, when I do that sometimes, That I kind of feel closer, Because They get it, and what we go through. Good Luck

    Lisa x

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