Hey all. I finally managed to get a GP appointment but it was with a locum,I nearly didn’t go because it wasn’t with my regular doctor who is fantastic with me and believes in fibro and PSA ( have come across a few who don’t!). But im so glad i went. She couldn’t understand why i wasn’t on lyrica or something like it. So far its really helped the fibro pain and helped me work out what is PSA pain and what is fibro? My back is really bad at the moment as is the fatigue. I’m totally devistated tonight as i have not been able to move out of bed all day. I could hear my kids playing and giggling down stairs and i just couldn’t move to go a and join in! I really hope that this new drug helps my fatigue because im missing out so much with my kids. It sound really stupid but i really miss them! I really miss being the mummy i used to be! My daughter jasmine is 12 and she has just grown up so fast this past 6 months, she has just turned into super sister and took on this new role of being there for her little brothers who are 5 and 6. I really feel for her. She gets great support from young carers and gets to go out once a week with them. But i worry about her so much. Its hard enough becoming a teenager but having to cope with my illness and doing all the extra things she does to help her dad and brothers? Its just heartbreaking. I just want to get well. I used to always pretend that this illness wasn’t happening but iv had to accep it and im realy trying to. I just hate the fact that my family is so affeted by it. sorry for moaning but iv no one i can talk to about how i feel and it feels a bit better just getting it out. Xx
It sounds like your daughter has really stepped up to the plate. And that's good that the lyrica seems to be helping. I was wondering what your treatment was for the PsA right now, and if it is appropriate. It sounds like you've been hit pretty hard at this point.
Yeh I really feel like I have been. I take
15mg Mxt a week
200mg x2 slow release tramadol daily
30/500mg co-codamol x2 4x daily
15mg Predinsolone daily
50mg cyclizine 3x daily
75mg lyrics 3x daily
plus vitamin d and folic
Jasmine is such a kind caring little girl. She always puts everyone else first. I think that’s why im so worried about her. Its far to much for her. I have tried to talk to her about it and asked her to take some time for herself but she just plays it down and tells my she want to help. I just wish I was well enough to take some of the strain off of her and my husband. Its just so hard because my youngest boy is disabled and needs so much care.
Have they talked with you about biologics or adding in another DMARD? I'm asking, because long term, prednisone is not good.
Hey stoney, iv been on prednisone since April,I am worried about how long iv been on it but when I asked about trying something I was told I had to do the mxt trial for another 4 months. I’m going for more tests this week including a tilt table test as my heart rate keeps falling and im now taking sezures and my neuro thinks its my heart causing them? I don’t know?
Hey Sybil. I just really feel for jasmine. We are really close, alot closer than I have ever been with my own mum. But I know she has questions she needs to ask me and is too afraid to. My health has really went down hill since last Christmas and its been hard on everyone. I just want to make sure she has all the support I can give her. I’m going to contact her young carers worker tomorrow and see if she can take her out for coffee and a chat. Jasmine would be to afraid of upsetting me or her daddy and she won’t tell us exactly what she’s feeling or thinking. At lease with young carers she can be honest with out feeling guilty. She hates making anyone feel bad. This weekend has been really hard as iv had quiet a few sezures and haven’t been really able to do anything.