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SarahK21
05-04-2010, 02:20 PM
I was just wondering how often, and how long do flares last? I feel absolutely horrible today. My joints are very painful, and my muscles feel like jello. Does anyone else have this? As i have already said in one of my earlier posts, I have not yet been diagnosed, but my test are all elevated. I am just waiting for a rhuematologist to have the final word. Anyways, I am also feeling mentally unwell. People are telling me to just get over it and move on....dont let it control you. How do you do that? I didnt think that i had control of how my body feels. I eat right, exercise, and everything else. What else can one do? I am tired of people taking this lightly. If it walks like a duck and talks like a duck, it probably is a duck...meaning, if i have positive results, and all the signs and symptoms, what else could it be? Any ideas or advice?
Sarah

Saysusie
05-04-2010, 09:41 PM
One of the most frustrating things about this disease is the fact that it is not the same for everyone and that it follows no predictable path and has no predictable pattern. Just as the disease and its symptoms are different for everyone, so is the pattern of relapse and remission.
There is no way, at all, to know how long a flare up will last, if we will achieve remission, or how long remission will last. Each of these issues are individual and depend entirely upon the progression of your particular case. I am sorry that there are no concrete answers to give you.

What you describe is familiar to many of us and I think that we've all felt what you are feeling at one time or another during our disease. The painful joints are due to inflammation because your disease is active right now. The muscle pain/weakness that you describe can also be due to inflammation caused by the disease and is known as myositis. Also, many of us with Lupus also suffer from a condition known as Fibromyalgia. This condition causes persistent pain in most or all of the muscles in our body.

Unfortunately, we too often have to listen to the words for people who know nothing about our disease, how it affects us, and what we have to live with. Their thoughtless words are often not meant to be unkind, but they have the same affect upon us as if they were trying to be intentionally cruel. Sometimes, in response, we have to be equally thoughtless of their feelings and simply tell them that, since they know nothing about Lupus that they should keep their comments, opinions, and unfair observations to themselves. If they cannot offer you support, comfort, and understanding, then you prefer that they shut up and stay away from you!! If they wish to provide you with support, comfort, and understanding, then you will be happy to give them information about the disease to educate them and explain to them how this disease affects you!! If they are not willing to learn..then they are not good for you and you may have to let them go.

This is a very real disease with symptoms that can be debilitating, do not let them or their words minimize what you are dealing with. Please know that we understand, we care, and we are here for you.

Peace and Blessings
Namaste
Saysusie

DrinkofWtr
05-05-2010, 09:12 AM
Flares vary from person to person with lupus.

gina
05-05-2010, 10:13 AM
Susie said it best. I have been in a flare i don't know how long, but as of tuesday morning no pain or weakness and my brain seems to be functioning better woohoo don't know how long it will last but going to enjoy every min. of it i can without over doing, most the time wheni feel this i go crazy and bamm a flare comes, so going to enjoy it slowly and hopefully will last longer this time.

the not knowing will drive you crazy so just try to think about other things and rest eat good an were here if you need us.

Troy Blair
05-05-2010, 10:17 AM
It's been 15 mths since I got told I had SLE,RA and AS I'm in and out of hospitals last one ws bad lost kedney function
stopped breathing but the good lord and doc's brought me back. But I somtimes wonder why? I hear of remission but I
get no relief and tired of the predisone as I'm sure alot of people are,also starting to forget things simple things.. where I've
been,said or done just couple days ago! I dont mean to be so neg. but no one around me understands I feel lost but I
get up and fight everyday I can I'm not giving up just getting tired.

gina
05-05-2010, 10:20 AM
I was told its called brain fog and i have that all the time now. i was going to go back to college but can't do it now. can't retain anything an i am a audiotory leaner so it makes me hard to go back and study my notes. i just forget everything and its gone unless someone reads them to me again. I hope things go better for you troy, i know some of us will have a long going flare for years until any remission. damm spelling i forgot that also, lol, good luck troy you are in my thoughts

Troy Blair
05-05-2010, 10:45 AM
thank you for listening this seems to be the only place I can vent..again thank you