I have a question about your strength during a flare. I got off prednisone about 3 weeks ago. I stayed on my Embrel which wasn't enough to prevent a flare. So now I am on 10mgs of Mtx as well. I am a patient person with a good attitude! But this flare is going on and on. I understand I need to wait again for my meds to work...but I just wonder if you all feel loss of strength as well when you have a flare? I barely have any strength. To hear me on the phone, I sound fine. But, I cannot get up off a chair, or just get my household chores done. Part of it is pain as well. All my joints hurt. I was so much better on Prednisone but I took it for so long that I had terrible side effects. Would love to hear your reactions as you waited for the meds to work. Thanks for your help! Susan Lee
Susan Lee- I am weaned down to 2.5 mg. pred and hoping to get off it soon. I have definitely noticed a loss in strength. I struggle to get out of a chair or off the couch. A couple times I have fallen when I tried to hold my own weight to get down to pick something up or leaning over.
I attribute it to lack of exercise. I pray for the day I can exercise regular. I miss it so. I felt so strong.
I am not flaring so it has nothing to do with a flare for me. I hope the MTX kicks in for you soon and you don't have to go back on pred.
Keep us posted and I hope you find your strength. When you are flaring there is not much you can do but wait it out. IT SUCKS. I hope you get some better advice.
I really am trying to be supportive
I have been this way for two months straight. I got my positive
blood tests back last week. I have my appointment in about a
week. I am waiting for some relief. I have been in severe
pain for well over a month.
I am just hoping to not live this way for the rest of my life. I
haven't had a pain free hour in months. I honestly am doing all I
can not to lose my mind. I am holding out hope for my doctor's
appointment.
My weakness is so extreme, I am really worried. I feel your pain
and hope you find relief. My mom got off prednisone and does
really well on MTX and Arava now. She is practically symptom free
for years now. I am hoping for the same results.
I too can sound normal on the phone. I find myself stuck on the
toilet at night terrified to stand because of the excruciating
pain. I also can't life my arms at night to get off the
bed. I am practically paralyzed. I have never experienced
anything like this before. I feel like I am in triple gravity
pinning me to the bed, along with shooting pain in my neck and
shoulders.
At a 10 in pain and lethargy, I cannot do anything. I sleep constantly an dcannot muster enough energy to roll over in bed. Going to the bathroom is out of the question. I swear my body knows this cause it seems that I typically drink something all the time cause of a dry mouth and always thirsty the majority of the time, but right before a flare, I do not ever want anything to drink for about 2 days.....then the flare comes, usually right before a weather front.
9: I can make it to the bathroom but that is about it, I am sleeping or just laying there in bed dozing.
8: I can walk.
7:I can drive but have barely enough energy to grocery shop.
6: I can grocery shop a little.
5:I can do household chores and maybe mow part of the lawn in the summer.
4: freedom at last but with pain
and so on.
It ebs and flows for me mostly and I get discouraged. Recently I have been really concentrating on teaching my daughter several things about me and trying to get all pics in order for the time when I am at a 6 or above always. I miss the life I used to have when managed better Rheumatoid wise and I also miss my youth and all the energy it gave me. Did I mention I hate this disease more every year? I have gotten used to it but do not like it at all. THe only way I know how to cope with it is to become very educated on it and to learn my body and how it reacts. It is mostly environmentally charged but not always. I have been under tremendous stress this past year but more so since the turmoil in November concerning my daughter.
I guess the only thing I have to offer as far as advice or insight is to take it easy and try to keep ahead of the flares, if that is even possible.
bb
I went to the rheumy on Feb. 22. She gave me a whole body cortisoneThank you Badbones, roxy and Fiona for your replies. I so appreciate your taking the time to write. And, I am so sorry to those of you who are having problems with a flare. I pray you will get relief soon.
And to Arizonara...Your reply sounded sooo familiar to me. And, reading your explanantion about feeling paralized is just what I am feeling. What meds are you taking? I hope it helps to know someone else is going through the same scenerio that you are. And, I have to believe that with the right meds we will see an improvement. Please keep in touch and let me know how you are progressing. I will do the same. Susan LeeSusan, I am on all natural therapies until I see a doctor. I
haven't been able to get to a doctor having no insurance, but I
gathered the funds and am going in Monday after this. I can't
wait! It will be my first medication. I am soooooo ready
for something. I take OTC right now and it doesn't do much, my
diet seems to help me more than any OTC meds. I am still working
part time though to get by.
I hope you get some relief soon. I feel so hopeful with this
doctor. I will let you all know how it goes. 20th can't
come fast enough!
Arizonara...I will pray that you get some relief soon too! I didn't know that you didn't have insurance. Did you try the places that help with monies for medication? If you don't know about them, I did save a message that gave a list. You may qualify! Just write me back if you want that list. Take care, feel better and keep in touch! Susan Lee
Hope you are feeling better soon!OMG this all sounds so familar. When I'm really bad, moving isn't
something I want to do. Pain, aches and stiffness make all but
the most simple tasks nearly impossible. On those days, its all I
can do to put dinner on the table.
I can't keep up with housework even when I'm not in a flare, I keep
waiting and waiting for the drugs to "kick in". Shopping is the
thing I dread the most as it is sure to wipe me out for at least 24
hours and is very painful.
I've had a couple of flares where I ran a low grade fever, chills, and I swear even my fingernails ached.
So what do I do? Take it a day at a time. Its so
frustrating because I can make firm plans. One day I'm alright
the very next day I'm so stiff I can barely move. Fortunately, my
rheumatologist has addressed my pain with some pretty potent drugs and
also my sleep. I take them, do what I can when I can.
Problem is, these drugs are also don't really take care of it when its
very bad.
One coping thing I have done is to get very easy to prepare foods that
hubby likes. All I have to do is zap them, whole meals from Ala
Zing. I also make every trip up and down the stairs count.
Those are good ideas. I am also making foods that make good
leftovers for days I feel bad, like homemade soup or stew. It
reheats nicely and is easy to eat. I buy lowfat frozen spaghetti
dinners. It isn't much, but it is like a feast when I am unable
to cook.
I will bake muffins and things like that so I can just grab one and
they store well. I keep an apple and banana on my nightstand at
all times in case I can't get out of bed. It is helping.
Part of losing your energy is if you don't eat healthful foods if you
can't move. This doesn't take pain away but helps me get going
and feel less helpless.
I have also started brewing tea in the coffee maker, then I have leftovers I can heat in the microwave on bad days.
Copyright ArthritisInsight.com