Hello, i was diagnosed on jan 12th.
I have been reading posts over the past few weeks and i feel for every one of you. I have received virtually no information from my rheumatologist about my condition or what i can expect. I was given a leaflet about sulphasalazine and told i need to go back and have blood tests every two weeks after taking the meds. I have not yet had an appointment with a nurse although this is booked for april. I have not yet started the medication prescribed to me, one because i am quite worried about side effects and i have trips coming up for work requiring me to travel abroad I am also in my head wanting a few more weeks of not having to take tablets before i embark on this journey of having to take tablets every day for a long period of time.
Do i have to take these for the rest of my life ? I was told at least the next 2 years. Does this mean i could come off them completely or will i have to change drugs? I think i am probably a little bit in denial about the whole thing. I am rebelling and dont want to take them, started to go out and run and then realised i cant very well at all! I have read LOTS of information on various websites about the condition, but feel very alone and cant seem to find anyone to talk to who can relate to what i am experiencing. Having told my two bosses at work, one said i should forget western medicine and look to chinese medicine and then forwarded me details of vitamins, omega 3 and various other vitamins to take. The other went to the other extreme and said that i will end up in chronic pain and should start to look for medicinal cannabis ! My partner thinks that i need to get second opinions to see if i really have it and to see what can be done to treat it. Of course i know they all mean well, but clearly dont really understand. My mum, after asking about all my symptoms now thinks she has it and has been less than sympathetic.
I have no friends, and no one to talk to. I take the passenger lift at work because walking up the stairs several times a day hurts my knees on some days and makes them swell up. I then have comments albeit jokily that im lazy or people laugh that i take the lift. I do understand that people dont know i have it or understand the condition but it is frustrating, and lonely and i then get embarrassed. At the moment i would not say that i am in chronic pain. I feel a bit of a fraud when i hear how people are really struggling with pain and have had to give up work. I am not at this stage. I hobble around in the morning for half an hour as my ankles hurt a bit and my knees hurt a bit and swell up. I have wrist, elbow pain, so when lifting a pan of water, or now even a cup of tea i start to feel the twinge in my elbows and wrists. Its not chronic pain though, just bit by bit, twinges, swelling and aches are creeping in across more and more of my joints. There have been days where i ache a lot and other days when i dont. have a lot of neck tightness and pain and severe migraines and headaches which i have had all my life. Now i am worried my neck could be arthritic. i am often tired. I am worried that i am going to end up in severe pain and lose mobility. I dont know what is down to arthritis and what isnt. I dont know if this is going to get worse or could stay how it is. Could anyone tell me what the role of the nurse is? I feel a little bit like the walls are closing in around me and that the more people i speak to the more i realise how on my own i am. I am 43. If anyone can shed any light as to what i can expect i would be most grateful