2.5 days

By Ish Sunday, June 26, 2011

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Hello Fellow RAers!

It was wonderful! I woke up Thursday morning and felt pretty normal.... "old normal" that is! Barely stiff, barely any pain. Wow! What a weird sensation!

As the day wore on, things were still good. Hmmmmm. Then came the dreaded night stiffness and pain?? No indeed!! A very pleasent night! Slept like a baby, not a rotisserie chicken!

Okay, obviously something's wrong, right? The next morning was the same.... the "old normal" was there, the whole day was awesome! I was careful not to overdo because I really wasn't buying this whole "I feel great" thing. But as the day and night wore on, life was not only good, but perfectly wonderful!!

The next morning was the same! I was starting to believe!

Then, wham. The new reality came back. Pain, swelling, stiffness.... blah, blah, blah.... you know the refrain.

So here's the question. How does everyone deal with this? The disappointment. I know I should simply be grateful for the break, but it just left me feeling cheated.

Thanks for any insights you may have.

Ish

Time for a change

Comments (8) | Add comment

V, Health Guide

6/26/11 6:52pm

Hi, Ish,

I am happy you had a few good days in a row. I don't have an answer for you, because I am still hoping to get my RA under control with the MTX so I can back off the pain meds and prednisone. I am okay...but I am never feel "good" for an entire day. I have some days that are more good than bad, but it is kind of crazy the way the pain and fatigue can increase and pop up out of no where. So, is this the way it is always going to be unless we go into remission??? I would like to hear from some of the veterans of this disease.

Thanks,

Ish

7/20/11 10:44am

Hi V,

Sorry that it took so long to get back to you.

It sounds like you and I have a lot of the same questions.

Being on prednisone is never any fun. Does it disrupt your sleep?

Hope you feel better soon!

Ish

Lene Andersen, Health Guide

7/ 8/11 12:42pm

"like a rotisserie chicken"! Snort! That was awesome.

I wrote a post about living with dread, about life being predictably unpredictable, so I'll link to that instead of going on and on in your comment box. I think that you develop a sense of willful blindness eventually, a sort of intense focus on the good days. Over time, you also learn that just as the good is sometimes followed by bad, so is bad followed by good and that helps. Trying to get some sort of control over things helps, as well. You can do that by learning to manage your energy and identifying triggers for flares can also be an important part of this - although it doesn't completely eliminate the flares, it can decrease the intensity or frequency.

how long have you been on Enbrel now?

Ish

7/20/11 10:57am

Hi Lene,

Sorry that it too a while to get back to you. I really got a LOT our of your living with dread post. A big bowl of potato salad to go with the rotisserie chicken.... also known as "food for thought." Thanks for linking to it.

You mentioned identifying triggers or flares. Like? I know overdoing it is a biggie. Also, hormones. Oh, and geting breathed on by sick people.... anything that stimulates the immune system. But are there other things? Am I missing something? It all just seems so random and (if I'm being honest) mean. (We need an eye rolling smiley face)

What else? Oh yeah. I started on the Enbrel last September, so it's been almost a year. I know it helps with the fatigue, and the morning stiffness is better. But I've had much much much more pain and stiffness in my fingers/wrists/ankles/toes and various other joints. My problem is that I don't know if it's that the MTX/Enbrel combo isn't working well enough or if it's just the progression of the disease. My other problem is that when I go to see the rheumatologist next week and ask that question, she'll probably give me her stock answer.... "I don't know." (Okay, stepping away before I REALLY get wound up! )

I'm off to count spoons!

Ish

Lene Andersen, Health Guide

7/26/11 8:26am

sorry about the delay - it's been a bit of a crazy week.

In terms of triggers, it does vary from person to person, but whether can be another factor in bringing on a flare. For me, has rain always made me hurt morein the switch between any weather, really - i.e., changes in barometric pressure, tends to knock me for loop. Other people find that sugar, food to the nightshade family (tomatoes, potatoes eggplant) or fried foods can contribute to symptoms getting worse. Try doing a diary for 3-4 weeks where you write down what you eat, what the weather's like, what you did, what the match you took, etc., every day. Over time, it can help you identify patterns.

I hope this reaches you beforeyou see your rheumatologist, because I wanted to point something out. If the Enbrel/methotrexate, all is suppressing your disease, there will be no progression of it. That means that if you are experiencing symptoms of disease activity, you'll probably need to mess with your meds, even increase the dose, add another medication or perhaps try another biologic. If your rheumatologist says "I don't know" get a second opinion. "I don't know " isn't good enough if you're flaring.

(Yes, I am in "kicking butt and taking names" mood today, why do you ask? )

Ish

7/27/11 7:03am

Hi Lene,

Thanks for the information and advice! Yup, just in time... my appointment is in an hour. I'll let you know how it goes.

Ish

Barb

7/ 8/11 7:05pm

Ish, OMGosh! It seems you are experiencing what I am. It was just a few weeks ago, I wrote a post about how well I was doing. Even dancing, WOW. Now, my wrists and hand joints are red, swollen and irritated. Geez, not sure if I will ever get used to this. Ups and downs are horrible. It's like the big "RA tease, haha see what your missing?" I am trying to stay Optimistic that this flare is only related to my use of progesterone at the moment and as soon as I get my female parts back in order it will stop. I hope, I hope, I hope... Wish I had better coping skills... take care, Barb

Ish

7/20/11 11:10am

Hi Barb,

Oh yeah, hormones are a killer with RA! I hope you're feeling better now.

Sorry that it took so long to get back to you. I was having "I don't want to sit at the computer because I'll get stiff" issues. (We really really really need an eye rolling smiley face!)

You wish you had better coping skills? You and me BOTH!! I used to be calm and cool and totally unflappable. Now? I'm flapped. And cranky.

Did you read the posts Lene linked too in her comment? They help. As for other coping skills? Maybe we'll learn some along the way? I hope so.

Feel better sooooon!

Ish

2.5 days

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