Hi
All its a while since i joined the forum ( mid december by the looks of it). Have read through all of the postings and found it all very interesting.
Its all new to me so i dont know that I can actually add anything which provides light in the tunnel however some things did seem familiar.
a) for the two years i was being treated with tablet form steroids prior to diagnosis in November 09 my gp kept asking questions about me bones. i constantly added that it was not just in the bones but also the muscles, weakness and pain, so that kinda empathises with a lot of what was said.
b) when i eventually got to the Consultantm my one leg below the knee and in the foot was like a lump of ice with no feeling. I described the same symptoms to her but she made no comment to define any diff in pain muscular or otherwise other than to say she believed it was RA but would await the test results before being prescriptive.
c) in respect of the steroid tablets, at first they worked very well, then they became less effective, to the point i had no idea why i was taking them at all, i had gone from 10mgs daily to almost one every other day, and then gradually back up to 10. The specialist advised that they are only effective with RA in the short terms and that what had actually been happening was that they were masking the true nature of the condition. She promptly took me off of them with only the anti inflamitory tablets to keep me going until all test results were in.........then i really got to know the meaning of pain.........
d) when i went back for my test results and confimed RA she asked the nurse to give me a injection into buttocks of steroids, miracle cure whilst i started the new meds.
e) four weeks after i had my first appt with specialist nurse, by this time i felt the injection was starting to wear off so i questioned whether i would get another. advised not, usually only given as a one off to help me whilst drugs kicked in, usually lasts about 2/3 months, this did not impress me greatly, however the pain and swelling did actually reduce, although my feeling sick kicked in and took over from any pain issues - every cloud and all that.
f) up to xmas pain was no longer an issue, do not quite have the movement in my knees that i would like yet, but i would say the reduction of pain, movement and energy levels has increased, with the affects of the meds taking over my main area of complaint!!!
g) i got so fed up with feeling sick i made the decision to come off the meds over xmas, this worked really well,dont know that the specialist will agree tomorrow.but not feeling so sick every time i moved let me begin the pacing process and to gain more understanding of how much i could do and what things were easier to do for what length of time, so overall a positive experience.
h) i have had a couple of minor flares as i understand them, one was more pain and feeling generally unwell , the second was more swelling, not a lot of movement in knee and feeling very tired so both quite diff. Interestingly one seemed to come fromnowhere whilst the other came on after a period of the nasty cough and throat thing going around now.
i) back on the meds on 4th Jan, back at work and having to get used to pacing again combining home and work, so appear to be more tired again. Worked for over and above my four hours today and by six hours brain cell failed to function ( i used to do 14 hour days and still have plenty energy!).
j) work have been very good the nature of my role is that i dont have to start at any given time, i only have to work four hours a day ( was part time before it started), but now work 5 hour days or take hours off my annual leave which enables me to have a wednesday off to rest or slowly catch up with things around me i cannot/dont want to do having finished work. I have not needed any other adjustment at work, although i am confident that it would be there for me if i did.
I have felt fortunate each and every time i have come on here , as i dont have a third of the problems some have, but i agree its all subjective, so when it does get on top of you, degree compared to others becomes irrelevant.
I have stopped beating myself up with what i cannot do in terms of housework and the things i used to do and now concentrate on slow but sure improvement with a view ( may be tainted, yet to be seen), that once the meds fully kick in, i will be much much better off than now, and i will regain some of the old me back again....................
Lets hope the consultant agrees when i see her tomorrow.........
You all take care now.
Regards
Issy
