Got my diagnose this summer and it seems like whatever I do I just feel more and more miserable. To the point where I cant beleive my body has come to this. Feeling like a bucket of cr... Just getting worse and worse.
I don't want to diskuss symptoms or get special advise... But could anyone just please tell me a story about feeling like this and then getting just remotely better? Please?
Just need some hope. Or I'll book an appointment in Switzerland. Or is it Holland?
Crappy disease....
Just please tell me stories about experiencing improvement. Don't care what sort
My dear, I am sorry you are having a tough time. When I started my big flare that led to diagnosis last February, I was so so sick. I was dizzy that I could barely walk, I was so tired that I could do very little and stayed on the couch for weeks. My joints hurt so bad that I had ice packs everywhere. I couldn't eat, I could sleep. My eyes hurt so bad! I had troubled speaking and thinking and reading.
I was in heck. When I started Plaquenil, my rheumy also put me on prednisone to help calm my flare until the plaqunil started working. After a few weeks, I started feeling a lot better! I no longer felt like I was dying.
After 6 months, when Plaquenil should have had a good chance to work, we started tapering off steroids. That didn't work so well. I got sicker. So, now I am on methotrexate, and doing much better, and I am almost off steroids.
You are are still feeling very badly, you might ask your rheumatologist about a lose dose of steroids to help for a few months. I took anywhere from 10-20 mg a day. 20 at the beginning, then 10 for the last few months. Now I am down to 6 mg a day. I may not be perfect but I can do stuff, make it through a day, and play tennis once a week! Life is okay. I hope we can tweak the drugs more so that I can feel even better.
I hounded my rheumy. If I felt sick I called. I was calling them every week or sometimes twice. I wasn't going to just lie around sick waiting for Plaquenil to work. I couldn't. I have two little children that I have to take care of every day. My rheumy is very nice and always helped. You must be your own advocate. If you are so sick that you cannot function then call them up!
I truly hope things get better for you soon. Be hopeful, as things will get better. Peace and hugs!
One of the hardest things for me to get use to is the ebb and flow of this deal. I feel better and then I feel bad again.
In the begining (the first few years of coping) I didn't see that things do get better. It felt like I only got worse and worse and contemplated how I was going to cope with a life where I felt as horrible as I felt at that moment.
I would panic and question my life. "Is this the new me?" "Is this how life is going to be from now on?" "If it stays like this or gets worse I cant go on."
Now, almost 10 years later, I see that nothing ever stays the same.
When the pain and fatigue get unbearable I am able to remind myself that it will change back again. The up and downs happen the roller coaster is not finished moving yet.
The bad times are still horrible but at least I know that there is an end to them.
I can adjust my life in the pits and valleys and I will rise again.
Even if it takes a few months to feel better I WILL feel better.
And I know you will too.
I hope you feel better soon. It is hard to stay positive sometimes when in a flare, and feeling so lousy, but it will get better, at least better days in your future.
I said a prayer for you.
susanep :)
Thank you everyone. This means so much to me to hear.
I may need you to remind me of the same thing in the future. Thats why this forum is so great!