New diagnoses

Hello all i was diagnosed last Tuesday and to be honest i am bit lost at sea. I have no idea what to expect moving forward !can all you ladies who were diagnosed a long time ago help with this. Once your medication was sorted did the pain go away or is this it forever. It's weird i have had a really swollen painful knee for two weeks and last night i went to bed and the swelling was gone by morning, such a relief. The pain was still there but the tightness had gone and i was excited about a little less pain. Crazy. i think i my be in a bit of denial. i keep telling my self maybe their wrong. i am fit and healthy i over snowboarding and am frightened that my life is going to change so much. sorry for rambling i don't know anyone else with it.

thank you for reading

Natalie

15 Replies

oldestnewest
  • Have a look at the website for NRAS - lots of information on there without being scary. And you can contact their helpline if you are feeling down or a bit lost.

    It is overwhelming getting a diagnosis of a long term illness. Take it slowly, find out what you can about your options, don't take any quick decisions while you are feeling bereaved from your previous good health. The diagnosis may mean some changes, but there is plenty to look forward to.

  • It is a bit of a shock, and a lot to take in. And even after 6 years I do sometimes still think the diagnosis was all a big mistake, I'm not sure you ever do accept it completely.

    But take it slowly, and don't spend too much time scaring yourself silly with Dr Google. These days for most of us you can get back to a pretty normal life. I reckon I'm 95% normal now as long as I don't go too mad and overdo things. And generally pain free, but with a well stocked medicine cupboard to stay that way when the fairly inevitable mini flares occur. Listen to your doctors, and look after yourself with good food, proper rest and gentle exercise. That will give you the best chance of getting back to normal as quickly as possible.

  • I don't think the pain has ever truly gone away. The stiffness and swelling has been absent but the pain and fatigue still get me. I have good days but they are few and far between. We just have to be honest with our doctors so they can get us on the right path again. I've had a very hard time controlling my pain and I feel bruised everywhere and this has gone on since Feb. 13th. Its getting better but I'm always afraid tomorrow will be worse. I hope my response finds you well.

  • Everyone is different but speaking for myself. I was given methotrexate which has worked very well keeping the disease at bay. I do have days where I have pain but they are few and far between. Be patient as the meds do take a little while to work and some have side affects. But you should get a good quality of life so try not to worry! Good luck xxx

  • I Have heard such scary thing about methotrexate, like hair loss and sickness have you experienced this at all

  • I have been on methotrexate for almost a year, it worked really well but then alot of my pain reappeared so now we are trying infusions of remicade but I am still on the methotrexate. I have had some hair falling out but nothing anybody else notices. I have had no other side effects from it, I still hate taking it because it is a scary med but it helps and the scary part is mental for me :) I hate taking medicine.

  • I haven't had any hair loss at all. If I ever do since ive started Humira, i will discontinue using those meds. The last thing I want is to take something that is supposed to help and lose my hair, be sick all the time and get pulmonary cancer and be miserable. I was told to weigh out the pros and cons. Seems like more cons than pros

  • Hi Natalie sorry you have had to join but you do get help with any problems you get to find if anyone else gets them I started on medication 1 year ago and I am one of the lucky ones i have not had pain since I started I ache but not pain hope the medication helps you I was in mtx tablets but suffered with nausea and was change to medijet and not looked back X

  • Hi and welcome. I too have been virtually pain free apart from a few hiccups since diagnosis a year ago. My symptoms came on very suddenly over week or so but, with the help of steroids initially and then methotrexate and hydroxychloroquine, I have only slight pain and I think that is due to the secondary osteoarthritis in my hands and knees. Of course we can never know if or when a flare will happen but I guess I'm conscious of needing to keep as healthy and active as possible while I can.

    Very much hope it will be the same for you.

  • i have had some degree of pain for about 6 months but this last two weeks it seems to have gone mad, swelling in my fingers, knees and toes. i was frightened as it seems to be spreading so fast.

  • Thank you all, this seems quite encouraging, so essentially if they get your meds right its not as bad as it is right now. Although they have given me naxproxen and this week tramadol which a helping ever so slightly. I am due to see the consultant next Friday so fingers crossed. thank you all for your time

  • Yes, from my experience of 4 years with RA, if they get your medication right you should be able to live just about pain-free. That really is the key, and that depends on a good consultant / rheumatology team.

  • You can also search this site for answers and discussions to specific questions. If you can't find something you are looking for, go ahead and ask here and we will do the best we can to help you.

  • Welcome Natalie to this caring, supportive and knowledgeable group. So sorry you had to join us.

    I know you are scared, so my advice to you is allow your doctor to guide you through this scary time. As time goes by, you will be able to help navigate this disease.

    You may be one of the lucky ones whose doctor diagnosed you right away. The earlier you start treatment the faster the remission.

    Take care

    Sue

  • Thank you xx

You may also like...