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eeek why is RA so tricky?

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Rheumatoid Arthritis
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Posted 3/31/2011 2:27 AM (GMT 0)
OK so I've been off my MTX since mid December-no RA meds and going along without a flare.

There have been times when I felt like my pain was increasing but then it felt like it leveled off and was no worse than when I was on my meds.

Not sure if I just adapted to the new pain levels- I'm good at denial.

Lately though I have been having times when I am having pain while doing nothing at all. Stabbing shoulder pain. Buzzing all over joint pains. Since late last week I have been having periods of time when my hands feel sprained. Not the usual just achy hands. But it's all here now gone later.

When that happens- I feel like maybe I imagined feeling that bad.

I am wondering if things are catching up with me.

I have 2 more weeks before my tell tale liver panel tests. I really want to stay off the MTX at least until then.

My dr. told me I had to call him right away if I felt pain increase. I don't want to call him.

It's like I have to wake up immobile again before I admit defeat- what is my problem?

Truthfully though- I don't know if I'm in denial or just too focused on watching how I'm feeling.

I don't want to have RA anymore. If I pretend like I don't have it maybe I can will it away?

I hate RA
Posted 3/31/2011 5:52 AM (GMT 0)
Ay Weary's just caught on RA is a Demon it is a Monkey that jumps all over you then hides, i did the Pretend its not there about 11yrs ago we sold up packed up and went traveling in a motorhome no doctors other than prednisone & pain killers just local GP's No Rhumys i ignored it and did so for 3yrs but it kept peeking out at me and not having medical profecionals there to assist was hard and eventually we had to give in and move into a house and re -start the Rhumy merry go round it was nice tho to pretend it wasn't there if even for a while, i'm not sure really what effect it had long term if i would be better or worse now had i been on MTX etc thru that time but i just couldn't handle it any more i'd had it for about 10yrs already and had just had to give in and leave work so it was really hitting me i also got a Bad Rhumy that was so arrogrant i just Ran - well crawled away.

But one thing i learn't you can't run from yourself .and RA ain't going Anywhere i just had to learn how to live with him-still trying i get so many days where i say Exactly the same " i Don't want RA anymore"  and your right the more we try and "analize" our pain the weirder it gets,was that there before or did it ach or stab was it harder or am i getting weaker? very difficult to monitor i cant remember what it felt like to be without pain theres only degrees of it

                                                                                                                       shakehead

Posted 3/31/2011 5:42 PM (GMT 0)
Bad- thanks so much for your response! #1 you validated the here then gone now pains as being true not imagined therefore I am not crazy.
#2 it was good to here your experience of going through denial and where you've landed. I'm not sure if you would not have been less affected by the RA at this time had you stayed on your meds through the whole course but you are definitely more affected now than you were then- do you agree? So all in all the main point is- I can't will it away. I never thought of RA as a monkey but LOL- I do now. At least it gives me a little giggle to think about a monkey jumping all over me.

Oh- and it also makes me see I'm not right in thinking because I have not flared in this time frame of being off MTX I never will. I was getting cocky you see-

Posted 4/1/2011 1:10 AM (GMT 0)
I remember an old story told by an old woman long ago:
I have 3 men in my life. I wake up every morning with Charlie Horse. Then Art Thritis shows up and he takes me from joint to joint all day long. Then that night I lay down with Ben Gay. :)
Posted 4/1/2011 8:21 AM (GMT 0)
Hi Weary glad it helped a little that tricky little Monkey i do try to use mind over body i meditate and try to take as much control as i can "even tho we really know we Have None" when we took off for our trip i did have good and bad days and there was a few times i was bedbound for weeks at a time - in a motorhome that had its benifits hubby just packed up and moved & i looked out window! and my GP had given me a good introduction letter for any Doctors i needed to see, But it just got too hard so we sold it and moved into house but now i have been thinking Hmm maby we could do it again i am at that got to get away stage again my days exist of Doctors physio Rhumy's or sitting . i think the flare idea seems to make us think it will go away totally but i have found i've Never had a time where it has done that it has eased so i can walk with cane some days don't need as much pain relief then the flares where i'm knocked off my feet and Dopped up to the eyeballs then the following torn tendons etc that follow so my remission  is really a lesser of the 2. i guess that's why i think of a monkey it's always there.
Posted 4/1/2011 5:26 PM (GMT 0)
Tater- that's funny!

Bad- you really had guts going without meds in that kind of condition! Do you have deformities because of it?

My 83 year old uncle has RA and never took meds. I saw his hands and they are all crooked. he says his feet are the same way.
Posted 4/2/2011 11:03 AM (GMT 0)
Hi Weary, Yes i do Hands,Ankles,Neck and my problem is also internal Heart etc  i'm on meds now but still resisting
Posted 4/3/2011 2:33 PM (GMT 0)
Hi to all i am new here,but i believe i reached a point where i need to share with some one ,i live on stage [just about[ since i was 10,i was told i had ra about 3years ago i thought no big deal its just arthrites but i got worse ,i also have diabites , the pain got so bad i felt likt i had a giant tooth ache all over my body then sharp pains in my joints cant raise my arms i get so tired that if i dont lay down i feel like i cant breath cause i am so tired my feet are always in pain always have headachs panic attacks and now my dr say i have something called fibromiagia i did not think it was possiable to hurt so much and not be dying the ra meds will lower my immune system that is already shot with the dibetic illess i can barly do my 3 hour shows any more so i drink a few beers to numb the pain and it helps but then i get sicker  the pain is wost the next day and then im choking with gerd all nite and the next day  im barly making it  al the band tells me i look bad  can any one plese tell me is this ra or should i worry its something else  i pay for everything out of pocket my insulin my nexum   help

Posted 4/3/2011 8:02 PM (GMT 0)
It sounds like a combination of things.
The RA is causing the pain- you need to get with a matinance program for it.
The diabetes is causing the rotten feelings along with the RA and fibro.
The drinking's not helping either. It raises your blood sugar more making you feel even worse.

My suggestion and I say this in the most loving way-stop the beers, get with a good rhuemtologist to get on a good matinence medicine, they can also help you balance your blood sugar. Also try to take it easy with the long shows until you're feeling like your old self again.

I wish you luck.
Posted 4/3/2011 8:14 PM (GMT 0)
Oh weary I am so sorry for the mixed emotions that you are going through, along with the pain. RA is a tough road. I am not telling you anything you don't already know. You can't run from it, and for that i am sorry. I have gone through those emotions and i am sure at some point I will again. I have continued to think maybe it's all in my head. Or maybe since the Dr. has only somewhat given a dx that he may be wrong. Maybe it's just the FM being extra angry and focusing on my joints rolleyes Deep down, though, I know it's not. I have some days where my joints hurt less and I just wait...wait for that moment when they scream at me again. Then I wonder what did I do different so I can do it again. Sadly, Rarely does any of it work. I hate this disease too! I hate what it does to our lives, our family, our independence. We have to learn to adapt..it's not fair..it sucks..but we do it. Please hang in there. Call your Dr. He can't help you feel better if you don't communicate with him. Big Big Gentle (((HUGS))) sent to you weary. Heather
Posted 4/4/2011 1:16 AM (GMT 0)
Hi Weary, I think we all go through phases of denial. I know I have, enjoy the moment is my gut reaction. If you're coping without meds for a while it has to be good for your body to have a toxicity break. If your pain is getting worse or your joints start to swell up really badly then don't ignore it.
How stiff are you in the mornings? if you're stiff for more than an hour then my rheumy says that is a marker for RA being not under control.
I've tried at times to ignore my symptoms but have ended up in hospital twice, so I am not a good example. Both times I could barely walk by the time I sought help and both times it took me months to recover. So now I am a little more cautious but I do try and enjoy the pain free moments. I thought I'd never experience them again and here I am feeling younger and fitter than I did 12 months ago!!!
I did an information course about RA run by my local hospital, it gave me so much insight to the disease. Maybe you need to do some research. Their motto was "knowledge gives the patient empowerment". Maybe you need more knowledge?
It was qite an indepth course, we learnt about meditation, exercising and relaxation, as well as diet, medications, what the disease actually does to you, how its controlled now. Vitamins and supplements etc etc, very thorough, gave me a feeling of being in control. I ask more questions when I visit health professionals now too.
Arm yourself with knowledge, thats my advice. Don't be so hung up on the liver function test unless the results are really high I've been told its fine.
Ask yourGP about it.
Get second opinions.
Go for it, weary, best wishes, golitho
Posted 4/5/2011 1:40 AM (GMT 0)
Thanks mama and golitho for your own stories of denial. I guess we're all the same, wishing, wishing, wishing away the RA.

I have done a lot of internet research on the subject but not with meditation, relaxation techniques. That would probably help in all areas of my life.

Martini- it sounds like you don't go to a rhuematologist...maybe you should. Let your doctor's know you are financially strapped- sometimes they will give you samples or get you in a prescription assistance program. A few of the drug companies of biologics have very good assistance programs and they are not even based on your salary.

I wish you all the best
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