Just when I think things are starting to even out a little, am managing my pain to some degree that is bareable for me and was still working my regular shifts without wanting to pull my hair out until last Friday when I was getting ready to leave for work and went to go down the stairs, not sure what happened but as soon as I went to the first step is all I remember until I was at the bottom landing and dazed out of my tree. Luckily I didn't break anything but gave myself a decent concussion which put me off work for a day or so. I have no idea what made me fall, there was nothing on the stairs for me to trip into and now that I think about it, its the 4th major fall I have had since the 23rd of Dec. I have a fear that my leg is giving out on me without warning. I don't even know if that is a possibility with PsA. I have alot of movement loss in both of my feet, I cannot extend my feet and point my toes, I have little to no movement in my toes at all and cannot rotate my feet side to side or in a circular motion. My PT was giving me some strengthing exercises to do before I was diagnosed with PsA but the cramps I got after working out in my calves were unbearable and they would come one after another at night to the point I was beside myself with pain.
Now to top it all off I have developed pneumonia again, this takes such a toll on my whole body I guess due to the fevers and that every movement makes my lungs and heart work harder. Sometimes there is no winning for losing but I know there is alot of you out there who has things alot worse than I do and for that I feel truely sorry for you. Sometimes I think I'm at my breaking point but then something else get dished out to me and I take that on as well, maybe I dont have a breaking point after all who knows.
Like all of you I didnt sign up for this deal and am trying my best to keep up a good front all the time but damn, its just not so easy any more. I'm tired of doctors who only put bandaids on me and walk away, I'm tired of traveling to see my rheumy only to sit in her office for 20 minutes while she decides on a new medication for me to take, I am tired of calling and calling my family doctors office for weeks on end only to be told time and time again that they don't know when he will be in or they don't have his schedule and to call back next week, this usually goes on for months before I can get an appointment, and its not only me its happening too its all his patients and because of our pityful health care system on our island, we cannot change doctors if we already have one because they are so scarse. Then to top it off when I finally do get in to see him and tell him how I am feeling, he told me to see my rheumy because it isnt the field of his expertise, thanks for nothing doc! The fact that the clinic has lost my file does nothing to reassure me of their competence. Any way sorry for dumping like this but had to release it cause im driving myself mad and its not a feeling I can easily deal with
Oh Easternlady I am so sorry for your troubles. I know sometimes it feels we can not deal with one more thing. But amazingly that is when I find I had strength I never knew I had.
I do not know what your health care is like but I know that I have to be under the care of a Rheumy to get the meds that will get this disease under control. For me the cortisone injections work well but I kow that is just chasing the symptoms. To get any lasting relief, and to preserve my joints, I have to take the "scary" meds. I also do PT in a heated pool. It has made a big difference in my over all health and has helped immensly in staying upright! I use flexeril when the muscle spasms are bad at night. But the more PT I do the less muscle spasms I get. Right now I have been having a terrible time with abd muscle spasms. And my tummy is looking rather round so I know I have to strengthen my tummy muscles to help with the back pain. I never knew how much the abdominal muscles help stabilize the back! I work with PT when I have a problem with the pain or mobility and they always find a way that helps. I hope this helps you.
It does seem to be one thing after the other. I agree with Michael. . . The PT can be a good friend of yours. I keep my appointments down by doing all of my exercises at home religiously, so I only have to go in once or twice a week (rather than 3 times). Water exercises can be great for when you hit a rough patch. They can also help you work on balance, which is something I'm working on now.
Thank you Stoney and Micheal for your comments and advice. Even though I have had this pain for approx 14 years I am new to the diagnosis and what it means for me. I am still awaiting approval from my insurance company for Humira. I am happy that PT is working out so well for you both and that in itself gives me a renewed hope that now they know my correct diagnosis they can direct my exercises based on that and I won't feel like I am injuring myself like I was before. Thank you again and best of luck to you both
I’m so sorry, Easternlady. It’s difficult enough having a nasty disease like ours, without having the added problem of a doctor shortages. I hope you’re feeling a bit better than you were a few days ago. Venting is good. Take care!
I do hope your on the mend with your pneumonia and have recovered from your fall. It does take time to come to terms with having PSA and the next big step is learning to live with it and to make the most of our lives with this disease. Do get help if you feel you need help coming to terms with PSA or if it becomes all too much as that is not good for you either. Your Rheumy has to go through the try this and that to find out what might work for you. They never want to use anything stronger until everything else fails. In the meantime all you can do is hang in there and go through this process. Sometimes it takes a long time going through this process and most of go through this at some stage. The trouble is this disease is not an easy one to diagnose or to treat and it can be very frustrating. I wish there was some shortcuts or a way to get better results quicker. In the meantime learn as much as you can about PSA and get all the tips you can to help you along the way, you will find most of what you want to know on old posts, if not just ask and I am sure you will get plenty of good advice.
Hang in there, I'm thinking of you............get well soon xx