Hi everyone, I was diagnosed on the 6th of September this year after years of having the most painful lower back, the pain was nagging continually and eating away at me, so much that it slowly pulled me down, I had other symptoms as well but the doctors kept telling me I had mechanical back pain and it was due to my job, I was a senior carer in a nursing home and it involved lots of lifting, and handling of patients. In November 2011 we moved to a totally new part of the country to live a more rural life and to be nearer some friends. I had a new job to start but only managed 6 weeks and the scalp problem got much worse and my back was totally unbearable,i also had developed painful feet, hands and knees shoulders as well and my chest was painful. I was immediately signed off of my job and given more painkillers. It didnt clear up and then I was sent to a Rheumatologist who took one look at my scalp and listened to my symptoms of chronic back pain and he looked at my swollen hands and feet, he ordered blood tests, xrays and diagnosed PSA. So after 20 years of pain and taking painkillers I had an answer! Now Im at home and taking methotrexate currently 12.5mgs but it is being raised 2.5mgs a month. I also have a morphine patch for the pain, I take co-codamol too. I feel so blessed to finally have a diagnosis but also so down, the methotrexate has not done anything to help at all, I was also prescribed steroids but they made my pulse race and also made me sick so could not take them. Im so stiff and in so much pain all the time, I have days where I want to do so much but when I do I pay the price the next day so I guess I have to pace myself all the time. I have gone from being in charge of 18 elderly residents to being like a little old lady myself. I miss my job so much but have been told I will never be able to do that type of work again. I couldnt do a whole day at work at the moment because Im so tired alot of the time, is that normal? Most days I could do with having an afternoon sleep or if I dont I fall asleep in the chair at 7 or 8pm. I dont mean to whinge but I feel so yuk most of the time, are you all the same?
Hey lynbo,
so glad you finally got a diagnosis. Like you I'm waiting for the methotrexate to kick in. I'm on prednisone, too, and the mania at first was terrible. I made a joke out of it (afternoon crazies--gave my work a "breathless" quality) and luckily it did subside over time. I feel lucky that I've only just recently had some truly bad days. Mostly it has been manageable--but I know others have different stories to tell.
It does seem that the lesson with PsA is coming to understand yourself--what you can do versus what you want or feel you "should" do. I think this is a hard lesson as so many of us are driven by our passions in life and, to some extent, by our need to just carry on the pace of life that we have already set for ourselves (pre-diagnosis). PsA is a game changer. Our bodies tell us this. Our brains and our emotions may not catch on so fast.
If you're going to fall asleep early in your chair I hope you pick a comfy blanket, fuzzy slippers and a good mug of something you like to accompany you into la-la land. And I really hope you can find a way to leave the guilt to someone else. Cheers to you!
It can take a while for the methotrexate to work, so you need to be a bit patient. Some of that fatigue may pass with proper treatment, but it may continue to be there much of the time. It doesn't mean that you can't do things, simply that you need to plan so that you can rest and take breaks as needed.
Welcome to the group!
Your next step will probably be one of the biologics. They can reduce symptoms and disease progression for most. Some have mild response and some do very well on them. Hang in there!
Good morning to you all! Its 10.00am here and it is the most beautiful day cold crisp and sunny.Firstly I want to say thank you for your replies knowing there are other people out there with this is a comfort. I took my methotrexate last night for the tenth week. I have the usual morning stiffness and continual pain. The usual tiredness is here also, I have been outside with our chickens, geese and ducks and watch them on the pond and feed them, I am sorry to be such a moaner but I really am used to being in control of my usually hectic life, I feel like Im being left behind. I want to do so much but simply cant. Do all of you still go to work, I spoke to my GP and he said the disease has got a hold of me and is in a massive flare up, so I have just got to go with it I guess. I hope you all have a lovely day and are feeling ok today xx
Oh gosh! You aren't being a downer! We can all understand! I have actually got to the point where I am sick of hearing myself complain but right now it is just my reality. I try not to wallow in it but you are right - it is so hard to look at the life we had, the things we could do - and realize things have or need to change. I do still work - but I have been blessed to have a mostly-work-from-home job for the last several years. Even my less physically demanding job (I was previously a classroom teacher - there is no way I could do that now!) is a challenge these days. I am so tired all the time and my brain is foggy - neither of which is conducive to my normal late night work schedule.
I hope you find your happy and comfort in your 'new' reality. Sounds like a beautiful day there - enjoy it!
lynbo said:
Good morning to you all! Its 10.00am here and it is the most beautiful day cold crisp and sunny.Firstly I want to say thank you for your replies knowing there are other people out there with this is a comfort. I took my methotrexate last night for the tenth week. I have the usual morning stiffness and continual pain. The usual tiredness is here also, I have been outside with our chickens, geese and ducks and watch them on the pond and feed them, I am sorry to be such a moaner but I really am used to being in control of my usually hectic life, I feel like Im being left behind. I want to do so much but simply cant. Do all of you still go to work, I spoke to my GP and he said the disease has got a hold of me and is in a massive flare up, so I have just got to go with it I guess. I hope you all have a lovely day and are feeling ok today xx
Coming to terms with this "condition" is the worst for me> after two years I still havent accepted the facts. The biggest problem for me is also the lack of understanding from other people. They dont seem to get it that we have to pace ourselves each day and need to decide how much we can cope with and do each day. I have learnt to slow down but sometimes its also hard to do that. Hope your flare-up doesnt last too long....
Hi there, all I can say is hang in there…MTX took about 4 months to even start working for me when I started it 18 months ago. I was signed off work for a good few months during the start of my treatment.
The best advice I got was to treat myself to the advice I had dished out over the years to my patients…be gentle with yourself, learn to adapt your life to what you can do not to what you can’t. But we hear you…going from being in charge of your busy life to stuggling to cope with everyday living is so hard on the mind as well as the body
You may hear people talking about ‘spoons’ on here…there is a lovely post about a thing called ‘The Spoon Theory’ when I first read it I cried…it explains beautifully the way thought goes into everything you do.
Good luck with your treatment 
Hi Louise and Jo jo and everyone else who replied thanks so much for your replies, it means so much knowing that there are people who understand what this is like. I have decided that I have to go with it, after all its not a terminal illness and there are always people who are so much worse off. I guess its the accepting that is the hardest for me, I hate feeling so tired all the time and I hate the way people stare when I go to get up out of a chair when we are anywhere, I look like a little old woman after I have been sat down for a little while. I will have to lighten up abit I know and stop worrying about what I cant do and concentrate what I can do. I nursed my husbands mum in April this year she had a brain tumour and came to live with us on the day of diagnosis and she died 2 months after she moved in and it was such a horrible way to end a life. I was with her 24 hours a day the whole time, She was only 59 and I was thinking about her alot last night and I realised that my illness is going to be manageable eventually, sadly hers wasnt so Im the lucky one. I thank you again you lovely people x