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| Fri, 09-16-2005 - 10:52am |
Just got off the phone with the "phone nurse" from my rheumatologist's office. I called because I wanted to know how to handle situations such as what happened to me yesterday: I went to Target with my dh and was not there long. While there, I started to feel very tired. When I got home, my joints started to hurt enough where I wanted to just sit down. They did not get red or swell, but they hurt pretty bad. The nurse said she had talked to my doctor, and he said that the "only way" this could have been a flare is if my joints also became red, inflamed, and felt hot. Otherwise, this did not "present" as an RA problem. Is this true? Since I hung up, I have felt like a total fraud. If it's not RA, what is it? It has happened to me before, and I always thought it was related to my RA. I called to get my RA's input on what I could do. Instead, he told me that these symptoms were NOT even RA.
I'm posting because I feel so terrible about the call. Not to sound paranoid, but I'm starting to think that they think of me as a "problem child." I am so upset.
Sudie

Well, Sudie, if you're a fraud or a problem child, so am I--and my guess is that most of us have similar symptoms such as you describe. They might not fit your doctor's definition of a "flare," but they certainly fit my definition of RA related. After a Saturday of running errands, shopping, visiting the grocery, etc., I often come home and collapse with the feeling that I cannot walk one more step. The bad thing is that it comes on so suddenly. You can be getting along just fine and then your body hits this brick wall and screams "Enough already!" I've discovered that I can stretch out my endurance a bit if I stop and rest once in awhile. I know every good sitting place at the shopping center and even chose my "usual" grocery because it has a deli with tables about half way through the store. The pain and fatigue of RA varies greatly from person to person and in the same person from day to day. What you can do easily one day might seem impossible the next. You just have to listen to your body--something that I found difficult to do at first, but I have learned (sometimes the hard way).
So, don't let your doctor intimidate you. I'm a bit concerned by his treatment of you--you called for help, reassurance, information....and he did not respond because it wasn't what he considered a "flare." There are a lot of RA symptoms that are not technically flares, but they have to be dealt with and he should offer you the assistance to help you deal with them. Maybe it's time to have a frank talk with him about what you expect in a healthcare provider.
Rosemary
(((Sudie))) I agree 100% with Rosemary. I have a brick wall that pops up frequently.
After 4 years with my first rheumy, we moved to another area and I had to change doctors. This doctor took one look at me and started testing for everything, including cancer. All tests were negative and my white count was very low. After about 9 months, he took me off of all meds and told me that I do not have anything Rheumatologically wrong with me, which included that I did not have Fibromyaglia either. I was in shock! He really upset me, who do I believe, him or my last doctor. Why did I take these horrible drugs for 4 years, if I didn't need them. My mind was going nuts and he almost convienced me that I did not have RA. So, I headed back to my original doctor. He said that since I was off of meds, to continue this way till I felt it coming back. He just shook his head about the fibromyaglia. That new doctor didn't even touch me!! I was told to find a new rheumy in my area and that he would treat me till I did. The remission lasted eight months before I had to go back on meds. I did change doctors and maybe you need to do that too. I understand completely how that doctor made you feel. You know what you feel in your body and don't let him convince you otherwise. Have a talk with him and if you are not satisfied, tell him you want a second opinion.
Hugs,
Vicki
((((((((((((((( Sudie )))))))))))))), I'm so sorry you had a negative experience.
Molly
Dear Sudie, I thought I just might add my 2 cents worth. RA MAKES LIARS OF US ALL.
It is an interesting disease to say the least, and no 2 days are the same. One day we can be hoping in and out of the car, hanging clothes out, doing our daily jobs etc, the next day, we can be just in awful pain and very tired and even just walking to the car is like a mile hike.
You are so new to this disease, and after awhile you will start to understand your body, but that doesnt make it any easier, when we have to do the things we just have to do each day....Friday I was called into work and I really should have stayed at home, I was hobbling very badly and a couple of times close to tears, and my face was on that brick wall. Another staff member who is new and has not seen me in that state at work yet, was a bit concerned, but I just said to her, that today it is my feet, next week it could be my shoulder or wrist & hands.....it just makes my life a little more interesting, RUSSIAN ROULETTE of the joints. I simply take 2 soulubale panadol when I am at work which I find is the best analgesia with the quickest action for me at work, and does not impair my judgement.
I have pain everyday from my RA, it is due to joint damage rather than a full blown flare, although my joints sort of take it in turn at doing the "flare for the day" competition. I still cant figure out which is the worst, to have to deal with my runner up joints for the competition would be, my ankles...just cant seem to walk very well when they are both playing up, or my wrists/hands, makes it hard to do the simple things when they decide to flare for a day.
There are a few golden rules with RA, Sudie
REST when you are tired....(if you can even just a lay down for 10 mins, or a coffee break at work)( I take more breaks than the other staff, I just say I need a break and go and sit outside for 10 mins with a cuppa to recharge..ie when I can)
REST your joints when they are painful
ANALGESIA...take this on a regular basis, because we cope much better when our pain is under control
DONT bother too much with other people's asumptions about your disease, and how you should be doing things, or how you are feeling.
I can tell you 100% that on any given day I can have a normal ESR and all normal pathology, with no joint swelling or warm to touch, be as tired as anything and in a lot of pain, am I technically in a flare, no, but do I have RA..yes.
So dont you worry about anything, you are no fraud, you are just like most of us here love. So put a smile on your face. Tomorrow you may be able to shop all day with no problems. Lell
Molly
To all of you who responded to my posting...
THANK YOU!!
I have accepted that I have RA and now I'm trying to learn as much as I can about this disease. And there IS a lot to learn!!
My rheumy's "phone nurse" called me back and told me that the doctor wanted me to go on steroids. I reminded her that steroids make me feel a little crazy, she told me she would call in an RX for Naprosyn. She told me to give it two weeks to work, so that's where I am now. I'm so hopeful that it works to lessen my daily pain. The last time I took steroids (in the dose pack), I went into a VERY bad depression -- couldn't even get out of bed -- and scared my husband half to death. So I don't think steroids are an option for me. Has anyone else had that problem?
You are all making me feel part of this "family," and I appreciate it so much. No one who doesn't have RA has a true sense of what it's all about.
Sudie
Hi Sudie
Molly
I am sooooo glad to hear that I am not the only one who is "hitting a wall" now and then. I am 60 years old and try not to feel it. Today is a very good day, but two days ago I was like a mop! All I wanted to do was lay down and get myself together again. As other women on these posts have said, it is imperative to listen to your body. I don't recall having so many of these episodes in the past, but maybe it has to do with my age. As I am planning my wedding in May 2006, I don't know how to make sure that that is not one of the days where my "wall" is caving in!
Just know that you are not alone!
Gail
Gail,
Congrats on your upcoming wedding! I hope you can really relax for several days before. Then, you'll have a better chance of a great day!
Sudie
Molly