I am laying here being totally pissed off because for the past 6 hours my left ankle has been killing me and despite the fact that I have been resting with my feet up, now my right ankle hurts equally bad. I am so tired of this crap. I am going back to working nights and I am schedualed for a 7pm-7am shift tomorrow. I only worked 8 hrs last week and I have got to get in at least another 32 hrs this week or I am going to start drowning in bills again when I was just starting to be caught up from all of the work I missed in Feb. But I am most angry about being in pain..again...still. I think I just am still having some weird feelings of denial. Maybe I dont think I have arthritis untill I start having really bad pain and then I get all mad again because it just reconfirms it for me. I swear I feel like such a basket case sometimes. I wish that I either A-didnt have to feel like s*#t all of the time or B-could at least just be able to stay home and suffer with out stressing about work and money.
My knees and hips have been hurting lately too. What is going on? I was not expecting to start having this pain too...not right away anyways. I thought that would be 15 yrs down the road. If I was having mild pain and moderate stiffness to my hands for 5 or 6 years with barely any joint erosion, then why now all of a sudden in the past few months would it get proggressivly worse so fast? Has anyone else had this? Hi there: Yep, I was in remission for 5 1/2 years until Feb. 2005 and I had a severe flare. Put on 40mg Prednisone, Enbrel, and pain killers. Prednisone helped the inflammation to a point, Enbrel didn't do much, and the pain killers made the brain fog worse. Rallied enough to go to Mex. for 4 months but had another severe flare start up 2 months ago and there's no relief in sight. Started on MTZ along with the Enbrel and had tapered to 10 mg. of Pred. and now up to 20 mg. I'm not sure when this flare will end. It's been over a year off and on. I'm going to start Remicaid May 30th and hopefully I'll get some relief then. Mine progressively got worse over a short period of time and hasn't responded. In one years time I've developed erosions in my hands, elbows, knees, and feet and was also diagnosed with PA. Right now I'm scared because it's so aggressive. I also was in denial for those 5 years because I felt good and only had minor aches and pains. Guess what......it's back and can't be denied. You're not alone Crunchy and it doesn't sound as if many of us have come up with the optimum solution to dealing with the frustration that comes along with RA RA can flare at anytime and for any length of time. You can be in remission for 5 days or 5 years and I don't think there's a known reason for a flare. Like you I'm having problems with pain and meds not working and my mental attitude sucks. Have started to have crying jags
Happens to me too whenever I'm off prednisone for any length of time. Seems the longest I can go is a month. And yes... i'm dealing with the same thing. Mild to moerate pain in all my joints for 6-7 years, and now all the sudden, I'm getting progressively worse, fast..... My dad has a theory, and that is - Humira..... i felt better, and then I got worse. He thinks if I didn't take the humira, i wouldn't be getting worse. sometimes I wonder if he's right. Either way, I am getting worse, fast.......for no apparent reason. I'm sorry you're feeling crappy...... and I'm right there with ya. I cant work right now either... and my bills are piling up.......nothing I can do. Here's a hug for you. You feel me?
woobieLISTEN I WAS DIAGNOSED LAST JULY WHEN IN 4 DAYS I ENDED UP IN A WHEELCHAIR CAUSE THE FLARE WAS SO BAD JUST PRIOR TO THAT I HAD PNUEMONIA AND PLUERSY BUT FOR THE 2 YRS BEFORE I HAD ACHES AND PAINS I JUST THOUGHT IT WAS EXERCISING AND AGING THE DR KEPT CHECKING ME FOR THIRIOD AND OTHER STUFF CAUSE I JUST FELT LOUSY ANYWAYS SINCE JULY I HAVE BEEN ALLERGIC TO EVERY MED SO FAR SO I AM ALWAYS FLARING SOMEWHERE ON MY BODY. I THINK THAT YOU GUYS ARE AND HAVE BEEN LUCKY YOU WILL FIND ANOTHER DRUG THAT WILL GET IT UNDER CONTROL TO HAVE EVEN 1 WK OF NO PAIN AND A NORMAL LIFE WOULD BE GREAT AND YOU WILL HAVE THAT BACK ANYWAYS YOU GUYS SHOULD KNOW YOU HAVE BEEN LUCKY AND WILL BE LUCKY AGAIN.TERESAI understand all these feelings. Even on good days, it seems that so many things are taken away from us due to fatigue, pain and stiffness. I have always loved to run and play the mandolin. I most definitely cannot run, and the mandolin playing is limited to really good days. I actually love my job and worry about what I will do when I can't manage it anymore.
[QUOTE=crunchy]I appreciate all of the support guys. I guess the thing that makes it most frustrating, is that there are days when I feel okay. Not 100%, but then I havent felt 100% in years. But still, feeling happy and able to ignore aches and pains. Then the next day I am miserable again. I know this sounds bad, but I almost wish that if I couldnt feel great, that I would get bad enough that other people would see the difference. It is like being sick on the inside and no one else really cares. Just so long as the bills get paid and the chores get done. I want to be well enough to do it easily or too sick to do it at all. Sound crazy?[/QUOTE] I know exactly what you mean. On Saturday and Sunday, I felt like my old self...no aches or pains. By the end of the night on sunday, theneck, the hands, the feet and the ankles were in pain again. Don't let anything surprise you. Also; you may want to start considering a job that doesn't have you on your feet for 12 hour shifts. I can't imagine how it must feel to have worked so hard to get where you are and to now have to reconsider your career options.....but is standing 12 hours a day something you see in your future at this point? Hang in there girlie. I feel EXACTLY the same way you do. I go through those same emotions on a daily basis it seems. Not sure what exactly to offer other than the support of knowing you are not alone. Forgive me for not knowing, but what type of work do you do? Sounds like a tough job to be on your feet for so many hours with having RA. I feel frustrated just like you do. I think, oh I'm getting better and then it slams into me again. It's either the fatigue that just drops me to the core of the earth or unbearable pain. Here's how I cope. I do cry, lots of times. But I also make up lists in my head of all my dreams and want tos for when I feel good enough to do anything. I've found that changing activities and positions helps immensely. So, if I can't write on the computer, I write by hand. This is my love, writing. I also got to where I could barely use my hands. So, I bought a speech recognition program and started training it. This is hard to do. But it does focus me. I also baby whatever part is hurting so bad. For instance, with my hands, it was parafin baths twice a day. This works remarkably well. I also have lots of things to ease the pain. There's the medications of course. But I use heating pads, ice packs, the new tens unit, physical therapy, resting (I hate this one), doing something just absolutely fun (this always helps), calling friends (distracts me from my pain as some of them can make me laugh when my entire world is going to hell). Realizing it is a seesaw and preparing for it helps. I know that on the weekends I feel worse because one, I've worked all week and have exhausted my resources. I also take my mtx on Saturday and at some point, it makes my energy levels drop terribly low. I don't make any plans on weekends. None. I only do laundry every two weeks and alternate groceries the other two. Not making plans is very helpful because then if I feel up to doing something great it is all bonus instead of being this horrible disappointment. But yes, I hate the up and down, the constant changing levels of pains and where it hits you next. RA sucks so big! Well, hope you all have a Happy Mothers Day. Do something special for yourself, call someone you love,give someone a hug. Love you all Pam If I get on disability, getting closer to family is a high priority for me. Sometimes my flares are so debilitating, it is hard for me to make anything to eat and grocery shopping and errands are overwhelming. I am fortunate that my family has experience with RA. My sis in law first cousin is crippled from it and my niece's best friend, spent her childhood in and out of hospital with JRA. There are no questions in my family if my pain is real. I feel so lucky about that. I would not be so fortunate if they did not have first hand experience with ra. My family can be so in denial. When my daughter was diagnosed with schizophrenia, she had built up such a reputation of always getting into trouble, that they made comments like she was faking it for attention. It devastated me. One Christmas, they were making jokes about it, it was her first Christmas away from me and I started crying and yelling at the Christmas table. There were about 20 people there, some they did not even know me or my daughter. Anyway, I don't regret it, no more comments joking about my daughter's illness They are scared to death to say anything about her except how is she doing. Sometimes losing your temper gets things done
I know you have a supportive family Tara. It would be great if you were closer to them. My hubby is gone A LOT for his work. I have spent many days barely coping and wishing I had support. If I get on disability, getting closer to family is a high priority for me. Sometimes my flares are so debilitating, it is hard for me to make anything to eat and grocery shopping and errands are overwhelming. I am fortunate that my family has experience with RA. My sis in law first cousin is crippled from it and my niece's best friend, spent her childhood in and out of hospital with JRA. There are no questions in my family if my pain is real. I feel so lucky about that. I would not be so fortunate if they did not have first hand experience with ra. My family can be so in denial. When my daughter was diagnosed with schizophrenia, she had built up such a reputation of always getting into trouble, that they made comments like she was faking it for attention. It devastated me. One Christmas, they were making jokes about it, it was her first Christmas away from me and I started crying and yelling at the Christmas table. There were about 20 people there, some they did not even know me or my daughter. Anyway, I don't regret it, no more comments joking about my daughter's illness They are scared to death to say anything about her except how is she doing. Sometimes losing your temper gets things done
I know you have a supportive family Tara. It would be great if you were closer to them. My hubby is gone A LOT for his work. I have spent many days barely coping and wishing I had support. [/QUOTE] Mental illness is so difficult to deal with especially when it involves our children. I cannot believe people who make jokes. Good for you for getting angry.
RA surely is depressing, and could take more from us if we sunk into it. I think we should savor everything we can do on those good days, knowing that they won't last forever, and know that the bad days will not last either. Unfortunately, we cannot control everything about the course of the disease. It seems to have a mind of its own. We know that it is unfair to live like we do, but we don't have much choice.
I know a good day is coming for you Crunchy. Just hang on, and lean on others when you need to. I hope you have your pain under control soon.
DianeI appreciate all of the support guys. I guess the thing that makes it most frustrating, is that there are days when I feel okay. Not 100%, but then I havent felt 100% in years. But still, feeling happy and able to ignore aches and pains. Then the next day I am miserable again. I know this sounds bad, but I almost wish that if I couldnt feel great, that I would get bad enough that other people would see the difference. It is like being sick on the inside and no one else really cares. Just so long as the bills get paid and the chores get done. I want to be well enough to do it easily or too sick to do it at all. Sound crazy?
As for money, the clinic is about 70 miles away and with gas prices it can add up quickly plus we have to pay for meals too.
Crunchy-I also know just how you feel. Sometimes I
will go a few weeks without much pain, although I'm
always tired, and thinking it's under control and not
as bad as I thought. And then I wake up the next day
and it's all back, and I think oh sh*t-it IS bad and
getting worse.
I've mentioned before that I ive in san
francisco-alone-without a car so take public
transportation and walk up and down hills all day.
When I got my first flare and found out I had ra, I
realized that this was too hard a place to live with this
disease, without family and close friends. I think I
should try to move back to vegas, get a car, etc.
(although no $!!). Then I feel better and think "this
isn't so bad!" What a roller coaster-can't decide what
to do.
Yesterday I had to get cat litter on the way home from
work and after carrying it several blocks, up and
down hills and then on the bus, I though I was going
to die! just from cat litter!!
So glad you guys are here. Hang in there
everyone
You guys are so supportive It's a hard decision
for me, and sometimes I think I would be going
'backwards' as it took me so long to get out of
there,..but things have changed and I have definately
grown. (metnally & physically!! LOL) I am really in
debt, so I wouldn't be able to move soon, but would
like to plan for sometime in the next year.
In the last year or so my family really spread out.
Now my carson city sister lives in texas, my vegas
sister moved to santa fe and my dad moved to santa
fe then bak to lincoln, ca (in process).
I remember when I was diagnosed with RA I thought,
'well that's just great! I spent 30 years in vegas, then
I get out here and have ra!' So though I don't
have family there anymore, I would feel so much
more "comfortable", I could have a car and it would
be so much easier to take care of myself, not to
mention the affordability. And I have a whole house
full of furniture that is in storage there. Would be
great to get it out of storage and have an apt larger
than 500 sq. ft. so I could use it.
I think I need to plan to go visit in July or august (the
hottest time of the year) and see if I would be able to
stand the heat again.
So, you guys are welcome to come too!! Thanks for
letting me ramble.
Also, Happy mothers day!! Roxy, you are right...sometimes totally losing it really wakes people up![QUOTE=roxy]
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