I don't have any sage words of wisdom, but as someone who is nearing 26 and drastically had to reprogram my brain to what "normal means," I feel your pain. (Literally and figuratively.) I work full...
I know I'm late to the party on this one, but I have some input. I have lupus and CFS, among other things, and I recently started dating for the first time. (I'm 25.) Since my diagnosis at 19, I have...
Hey all I have been flaring sort of since the beginning of April. It started with lower back pain (which I have NEVER had) that referred down my legs. About 10 days ago, I was getting a massage, and...
I am having similar issues. I have found over the last few years that doing massage helps the best, but now I use it in conjunction with chiro and acupuncture. (My acupuncturist has used a TENS...
My acupuncturist uses one on me, and I love it! I'm looking to get my own as well. I don't know which one is best-talk to you doc- but I have heard that people often use them incorrectly. Make sure...
I get really bad fevers when I'm about to flare and while I'm in flare. Sometimes I get them just because it's Thursday. Such is life. I haven't found any good way to combat them unless I go on...
I'm in Eastern Washington, and though I have never personally been to UW, my doc has talked about sending me over there. I also have friends who drive over monthly to see docs in Seattle because they...
Hey all! I posted a few weeks ago about some feelings of electric shock in my chest and radiating into my arms. It went away after a while, but it's back now. I emailed my MA (who is AWESOME) and she...
Thanks Lynnwood. I was at my rheumy's office and saw his PA a few days ago for a regular checkup. He said he thought it was random inflammation around my heart or lungs and to take ibuprofen. Makes...
Thanks everyone. Please let me know if you hear from anyone about this! No, no meds changed or anything. I had this one other time when that was the case, but no changes this time. Hmmm....
Thanks! Let me know if you hear anything!...
Thanks for your reply Denita! My doc told me to wait a few days. If it doesn't go away, we'll run some tests and stuff. Meanwhile, I'm doing research......
Malar rash can last as long as it wants to, I believe. I've had it from a few hours to a few weeks. Mine looks like sunburn, but I know others can get it more brown or more noticeable. Sometimes mine...
I was diagnosed with lupus/CFS at 19, now I'm 24. I'm not sure if that's how young you're looking for, but I'd be happy to compare notes if you'd like....
So, for the past few days, I've had feelings like I've been shocked with electricity in my arms and chest. Has anyone had this? I saw the doc today for a regular appt, and he said it may be...
I'm pretty sure I have the best rheumy in the country. (I'm in Spokane, WA.) I absolutely LOVE him and his team! (He has a great PA and works closely with a naturopath.) Everyone else in the medical...
Hey hey! Last year, my rheumy said I didn't need to get it. I haven't had the flu in over 10 years, and I never get "regular" sick. (You know, the kind of sick healthy people get.) I saw my PA today,...
Plaquenil has helped a lot with the pain and inflammation, but I personally haven't had it help the fatigue. I've heard it helps some people in that regard. I've been on it for over 2 years, but I...
So, I have lupus, and I'm in grad school. Currently, my brain fog is so bad, I can barely do homework. I try to read the material, but I don't retain any of it. It's getting really hard to do my...
I'm so glad it's working for you! For me, it was a very gradual change and improvement. After a year or two, I went off it, and I flared right away. I guess I'd say I notice more of a difference...
I agree- go and have fun! I left for tour 3 weeks after getting my diagnosis. I told my docs that I'd be gone, and they were wonderful about answering questions. My MA is a Godsend- she would call or...
Welcome to the forum, Rebecca! There is another thread about POTS under Chronic Fatigue, if you want to look at that one. It sounds like you're in the same boat as a lot of us- too young to be...
No changes with me. I don't remember the last time something changed with me. At least not for the better. Best of luck with this!...
Let's both keep each other updated. I have lupus and a myriad of other things, so I'm exhausted all the time. I don't have kids (fortunately, at this point) but I have drastically limited how much I...
I did a tilt table test and passed out in under 5 minutes. (The nurse wasn't even ready for it because usually it takes 45 minutes or more!) My heart rate didn't jump as far up as my doctor would...
Welcome to the forum, and to the club. The hard part with lupus is that it mirrors symptoms of so many other things. Many of the symptoms you describe can be attributed to any number of things. My...
Sara's blog is despitelupus.blogspot.com He talks a lot about deciding to get pregnant and all that entailed and whatnot, plus how she cares for two little ones while taking care of herself. I love...
Hey Misscali I feel ya. I'm 23 and was diagnosed with lupus a few years ago. I have never formally been told I can't or shouldn't have children, but I sort of decided I won't. Based on the drugs I'm...
Hey hey! I don't have any advice as of yet. My main doctor thinks I have POTS, but my cardiologist has his doubts. I did the tilt table test and passed out in under 5 minutes (without stress-inducing...
I've been walking a lot, but I'm also a big fan of swimming. Sometimes, though, I can't figure out which is better- getting enough rest or getting enough exercise. After I do anything even moderate,...
Thanks Joy. I have a tilt table test in the next few weeks. I know about the diet and everything, but I'm trying to find people who have it to talk to. Do you know anyone?...
Anyone know anything about POTS? Postural orthostatic tachycardia syndrome. My docs are thinking it might be a reason for my extreme fatigue, on top of lupus. Anyone have any experience?...
Check out POTS. Postural orthostatic tachycardia syndrome. http://www.dinet.org/pots_an_overview.htm My doctor did a orthostatic test (I'm not sure if that's what he called it, but something...
I have lupus, but CFS has also been mentioned a few times, especially before my diagnosis. I can handle the pain and rashes and inflammation with lupus, but the fatigue is killing me! Thought maybe...
I had mono. It's miserable. About 10 months later, I was feeling even worse and my doc said it was CFS. After months of fighting and searching, I found out it was lupus. They thing having the EBV in...
So, my fatigue is impressively bad these days. My PA at my rheumatologist's put me on Provigil to see if that would help. Has anyone taken it? It's a stimulant that works with the central nervous...
Welcome to the club! I was diagnosed nearly 2 years ago, but didn't talk to family and friends about it for 4 months (I was traveling and doing research.) I look at dozens of books about it, but I...
For some people, the cold weather is worse. It sort of freezes up joints and increases pain. For me, though, it's the heat and humidity that's worse. I feel like everything swells more when it's hot....
From the research I did (not including talking to my doctors since I am not having children any time soon) I learned a few things. 50 years ago, when diagnosing lupus was much harder (imagine that!)...
I had the opposite problem. Plaquenil was great for the pain and swelling but did almost nothing for the fatigue. I actually have found nothing for fatigue. Of all the meds, Plaquenil was the best...
I had one doc tell me I had allergic responses to a whole list of stuff, so I went dairy-free and gluten-free for a long time with no help. My rheumy tested me again for such allergies and I think...
Sometimes my intestines hurt like crazy! It feels like someone is either poking them or squeezing them really hard, and then picking a new place to poke. Some days it even hurts just to touch my...
I got diagnosed a little over a year ago, and was not medicated, due to my job, for several months. Then, I went on Plaquenil and loved it! My rheumy told me that either I'd be fine, or I'd be...
My rheumy is young and AWESOME! I couldn't ask for a better (or older) one! Plus, since I'm young and plan on going to a rheumy forever (haha) I'm glad he's not going to be retiring in the next few...
I was told I can certainly give blood, even on meds. I'm a regular donor and have never had problems, but now I'm just waiting for my year to be up from spending time in the "malaria zone." Have you...
Thanks, everyone, for all your replies and thoughts. I spent most of yesterday in bed, as I normally do on my days off, and today I felt great! The sun was shining, the birds were chirping, and I was...
I have lupus and my hands tend to swell and turn red. I especially get a rash along my knuckles and around to my thumbs. Sometimes they've been so swollen that my ring hasn't been able to twist even!...
So, I've been told that light workouts are good for your body and to help keep energy up. But I also know that sometimes my body needs to rest and recover. So how do you know which is which? I've...
I have some FABULOUS sweats and chills, and apparently, lupus is the only cause. At work, I'm usually melting, so I ask others if they're warm... usually they're cold because I have the door open....