Monday, September 16, 2013

Flares... Flares... Flares... Do We Realize When The First Begin for Us?

I just read an article posted by a friend on the issues of an RA Flare. In general, when the word "flare" is mentioned, I think more on the lines of Lupus and a Lupus Flare. In fact, up until recently, I was kind of wondering why they call an "attack" of FM a "flare". I was thinking that FM, and CFS more came on and were "there" with you all the time. I was not really thinking of them as an illness that "waxes and wanes" as a flare does.
I have definitely got a grasp on a Lupus Flare. I am not sure if I have thought back after one gets so bad that I must go in for medication, how it first "began", how long it took to get bad enough to see my doctor and get medications, then how long it takes with meds to get over it and feel like yourself again.
The article talked about those first stages, of just feeling "off". You can't put your finger on it, but you just do not feel like yourself. You feel like you really don't want to exercise, all of a sudden, it seems like a monumental task. You feel twinges of pain off and on, then it becomes more of an ache in the joints and in the muscles also, In fact your body "aches" all over. I often with a Lupus flare, have what I call a "Lupus Migraine". NO amount of regular pain medication will get rid of it. The only thing that will is a strong dose of Solu-Medrol, and then the step down days of Prednisone. I have found that out over the years of suffering with these. It is totally different than my old regular Migraines were and are. Actually for some odd reason, I don't have my regular migraines as much anymore, not like I do the ones from a Lupus Flare. Yet, it does make sense because I have enough regular pain medication with the pain pump, that I think it takes care of the chronic migraine type of headaches. That is how I almost know for 100 percent sure, it is coming from the Lupus. Because pain meds won't touch it. But, if it were a regular migraine, then the prednisone probably would not do much to top it. So, they are definitely much different in nature. I then just develop more of a feeling of not any well being. I lose my energy to the point I just can't and don't feel like doing anything, not baking, not being on the computer, my stomach gets upset badly, I hurt all over, I can't sleep, I am "cranky", and get upset easily over every little thing. Anything as I said from taking a shower to making the bed is a monumental task. I just cannot muster up enough energy to "feel" like doing anything. I don't want to go out in public. I prefer not seeing anyone, or even talking to anyone... all of it a part of these illnesses and what they do to your body, your mind and your spirit. They just knock you on your ass, and you must be prepared to stay there, no matter what the time frame might be. You may feel this way only a few days, and then again you may feel this way for days, weeks, hell even months... nothing really "helps"... you must just try and deal with all of it, one moment at a time... one foot in front of the other, taking one task at a time, and finishing it before your bit of energy for that day is gone. I have been dealing with either a horrible flare, or flares... plus side effects from new medications and upping one of my medications... and believe me, I don't think I'll ever get better. Every morning I wake up thinking okay today I will feel better... only to be disappointed that all of those crappy feelings are still here. I wrote this below that goes with this on FB this morning, so I will post it for you also...

Below is my FB post that goes with the above information.....

The article was good. Actually kind of gave me a perspective of what I go through but i just don't think about it. Especially during the "initial start" of a flare. I think for me, and Anthony I think you are the same, and many of us, we have "dual" or more illnesses. I have RA, and Lupus, and Sjogren's, Raynaud's .... and so forth. Now I have developed the other symptoms that go along with MS. I have not even went to try and really get it diagnosed, because honestly I am not sure for one it will do any good. For the 2nd, I am really not sure who to go to. I realize that Neurologist's usually deal with MS, even though it is an AI illness. And Dr. Q. already kind of was in "agreement" with me, that it did sound like it was a good possibility that I have MS on top of everything else. In fact, when he told me he was not actually as "up" on MS, and a Neurologist, maybe better, I was kind of shocked. I felt like since it is an AI illness he would have some answers for me. Yet, he is really more leaning to be an expert in RA. In fact we rarely even discuss the Lupus, etc. My regular MD has always taken care of the Lupus flares, etc... and I go see the Rheumy for the RA. Of course many of the treatments are the same for all of them, thus I am on what I need for Lupus and RA. But, recently I wonder if I don't need more for the MS if I do actually have it, I am having massive issues, with weakness in my arms and legs. They feel like they weigh a hundred pounds each. Even when I first get up, I have a hard time sitting here trying to type. Also, with that, I have seemingly more "brain fog".. almost a bit different from the Lupus side of it. And this business about constantly dropping things, tripping, almost falling, is nuts. I have been doing that now for about 4 months or so. When I think back about "symptoms"... I had thought well I don't have any "bladder" issues. But, YES, I DID... I already had Bladder repair surgery... that we felt like I did not need, after I went through it. That specialist should have tried medication BEFORE putting me through the horrible surgery! That was the worst I have ever had I think. The recovery from bladder surgery is awful and it takes weeks and weeks, or more like months and months. Then, even after I had "gotten well", it really felt like it was all for nothing. I still had some of the same problems I had before the surgery! It took over a year for me to finally "see" a bit of difference. Then that surgery left me with some other side effects that suck. I always said if someone asked me about bladder repair surgery, I would say HELL NO! NOT until you have 2 different opinions and have tried everything else... there are several medications first, and I would have several opinions and do lots of research if I had to do it again. I was not thinking when I had it done. I just "took that doctors word" and went along, rather than really questioning it, and making sure it was the right thing for me first. What really was bad, AFTER THE SURGERY, and I was still having issues, THEN he wanted to try MEDICATION!!! What the hell??? I just was so mad at myself, for not doing the usual, and "listening" to my own body and mind. I decided after that unless I really have more than one opinion and I have researched and asked plenty of questions, and found out all I need to, I won't have anything like that done again... Anyway this article does kind of allow you to look "down" on yourself before the "flare" really gets bad and see what happens in the beginning...  I will give you the URL where this article is. They have some good information there about different realms of RA, and other AI illnesses, along with FM...

http://www.roadback.org/index.cfm/fuseaction/studies.display/display_id/90.html

Maybe this will also help you to gain perspective on how a flare begins for you...

 
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