Saw the internist yesterday and he is referring me to a Rheumatologist. Feel like my life is falling apart. Can't handle stress at all. My prednisone is down to 45 mg now and I have been having temple pain again. Seems like no body understands how I feel. My major symptoms are gone and I look normal so I'm no longer sick.lol. Are these feeling anything thatbanyone else has felt or am I really going crazy?
I think most of us have felt just the way you do at one time or other during our journeys with PMR. 45mg is still a hefty dose of Pred. Lots of potential physical and psychological side effects. Hang in there, it will get better. You find a stride.
Also don't be shy of advocating for yourself with your doctors if you are suffering. Just because the major symptoms have been controlled, it doesn't mean you are "fine". There's still an autoimmune illness underneath.
Hang in there, it's poos and wees on this journey so just concentrate on getting through the next 10 minutes and that will be 10 minutes you never have to do again. This is Endurance Survival 101 good luck big hugs
Hello. 45mg is going to make you feel anxious, panicky, out of control etc. It is just one of the side effects of the Pred. I had it at that level and it’s really tough, so as had been said, take things 10 mins at a time if you can. If you have any real stressors in your life, the Pred makes you less able to cope, so do try to get support if you can. I just acknowledged I felt terrible but tried to take no notice of it knowing it wasn’t really me and the feeling of catastrophe wasn’t real, which prevented me acting in knee jerk ways to everything. Pred can make you think you are razor sharp due to racing mind but usually one’s thoughts are disorganised with poor memory and poor judgement. I did next to nothing because I felt so weak and exhausted too. IT DOES GET BETTER! 🎺🌈 Remeber also, the Pred is doing a fantastic job, it just isn’t a miracle, side effect free drug like all drugs.
Try also to make sure you don’t stress eat the carbs your body is being duped into wanting too. That’ll stop the crazy blood sugar highs and lows that don’t help the mental state either. Panic on this forum as an outlet.
You are not crazy, nowhere near it, but a lot of people have felt the same way at some point on their journey with GCA. You will get through it - in a few months you will feel a lot better and in a year you will look back and see how far you have some. That may sound a long way away - but it is the thought you have to hold on to.
Me too in the early months but this too will pass, there is light at the end of the tunnel. Two years into this journey I can look back at some of the things that set me off on a rant and wonder was that really me. I’ve now got my rheumy trained to leave the tapering to me and friends and family trained to duck if they think a rant is looming. Be kind to yourself, sending lots of virtual hugs and 💐
AverilG, keep telling yourself 'This is a normal reaction to the high dose of Prednisone; I'm not crazy." Then just try to ride it out. As the others have said, it will get better and eventually you'll feel more like yourself (or yourself with GCA/PMR).
When I was first diagnosed, a friend suggested I take some time off work while I was on the high doses of Pred. My reply was that no, I felt that I could still work and thought I better save my sick leave time in case I needed it down the road. Looking back, that was when I needed it the most. It was when I was most 'scattered' or even a better description 'shattered'. I'm at one year in now and look back and think "whoa, that was a crazy ride". It still is somewhat, but now I'm on a frisky horse and not a bucking bronco.
Be really kind to yourself. Allow others to help you. Don't ruminate, if you can help it. Get sleep when you can. Eat healthy. Get out and take a walk. Breathe. Educate yourself on your condition as it will take away some of the fear if you know what to expect. You can and will get through this rough spot; it's just going to take a bit of time.
You are not going crazy and I understand the aggravation. It's insane what we go through. Do Epsom salt baths. Take melitoin, and make sure to take care of yourself. It's hard when people dont see the pain.
My heart goes out to you as I know exactly what you are feeling. I have gotten so bad I just can't take any stress. The least bit of upset I am screaming and crabby. Also get the cold shakes. I finally saw my dr. and she said my whole system is on alert and very very tired. I agreed to a small amount of xanax at night. My sleep is so much better and I'll just have to wait and see if it helps all the other problems. I suffer from fibro, pmr and back problems. It is the triple whammy so no wonder I feel so bad.
You aren't going crazy. You are on powerful drugs and your body is being asked to do a lot. I am lucky. I have a supportive husband and dear friend that get it. None the less
I want my old life back.
Have the best day possible
This is all so hard to deal with emotionally and physically... but what gets me through each day is knowing this will go into remission eventually... Thankfully it's not a life sentence... it could be worse believe it or not.
Hang in there... we are all here for each other😊
Feels like a cold
feels like water in my ear after showering
Feeling like a rabbit all those greens
What does GCA feel like at first?
Feel like I have wasted the week.
