I was diagnosed a year ago and have had (I think) a pretty positive attitude but lately I’m having trouble seeing the sunny side. I have lesions - like scabby rashes - all over my chest, mouth sores, incredibly painful swollen joints and I’m EXHAUSTED! Is all of this just life with lupus? My hands turn all sorts of colors (including navy blue - I look like I got smurfed) and the other day I passed out at work. Which is particularly unfortunate because I teach kindergarten and 5 year olds don’t respond well to that sort of thing. Any words of advice or encouragement are very much appreciated!
I had rashes, although mine were never scabby, mouth sores, swollen joints and exhaustion more so in the first several years of being diagnosed than in the later years. It will get better. My hands from day 1 were swollen, red, purple, blue and feel like they are on fire. I'm having my first flare over the last 4 weeks after a long period of everything being controlled with meds. My hands are where I always seem to feel the flare coming on first.
Hang in there. Don't push yourself too hard when you are feeling poorly. The more tired you are the worse you will feel. Learn your limits, but hang in there. I promise there will be better times ahead!
Dobby
Hello Christy,
If your one arm is thinner than the other see your rheumo abut muscle atrophy (Muscle wastage) as i've had this since my early 20's and it can be an issue with Lupus besides other diseases where you actually get weaker than you should through it and it's also involved with myositis...i hope this link below helps.
Regarding your hands being red then white blotches, you need to see if you have Raynauds also plus if sounds like your body is in a flare.
Love Terri xxx
Christy said:
I'm in kinda the same boat. I just realized today my right arm and hand are skinnier than my left and I'm getting mouth sores too. Yes and the pain is just ridiculous.
I def have these moments too. My hands have issues being down all the way because they turn red and get white splotches....... I could probably keep going lol
Anyways, know that we are here for you and make sure to surround yourself with people you can talk to.
Even though its hard to move at times I find it helps me emotionally to treat myself, whether it be a good book or something yummy for lunch.
I'm a preschool teacher and I'm dreading clean up day where we also pack things away its def tough.
I'm working on this too but don't feel guilty when u need to care for yourself.
((Hugs))
Hello mbaer,
It sounds like you've got a fare going on at the moment just the same as Christy, it can be a flare of just one symptom going on or chronic where several are involved.
The scabbing of lesions can happen as i have scabbing issues with many skin flares...this link below is about them besides pictures.
http://www.wisegeek.com/what-are-lesions.htm
You also need to get checked for Raynauds with changing colour, as i have Raynauds and it can become painful at times especially with joint issues playing up besides.
There's many reason for passing out..if you have hot heat where you live but it's mainly through dehydration when you get flares and lupus as a lot of involvement from the central nervous system.
The link below may help you plus it as on there about Raynauds and we also have a Raynauds group on the main page you can join :) xxx
http://www.lupus.org/webmodules/webarticlesnet/templates/new_donatenow.aspx?articleid=2323&zoneid=43
Obviously your symptoms scream flare. You may need to slow down and rest more. I know that’s not easy when holding a job, but this isn’t really a choice you have to debate. If you stay at the pace you’re keeping that has put you in this condition, you aren’t giving your body the resources it needs to recover to a managed level. The bottom line is you don’t have to stay quite this sick.
Terri told me about Raynauld's when I first joined, and I believe I have it as well. If I hold an ice cold drink or pick something out of the freezer and hold it in my hands, my fingers turn colors, and begin to hurt. This was the first winter that I didn't have problems with my fingers getting paper cuts that wouldn't heal, and the cuts would get deeper and more painful.
I have balance issues at times, and I woke up feeling just awful yesterday - a tremendous headache that just doesn't want to go away. I feel itchy, and I think its the spring weather and the pollen that's making me feel worse. I get dehydrated very easily as well, and really have to work to get my fluids in.
Ann A. has written many posts about Vit D, and how important it is to get it checked. Low levels will also increase exhaustion.
I hope you're feeling better, and I find for myself, that if I try to fight it, it makes it worse. When I get a nap and rest, then I can rejoin my day.
stay positive. you have a lot of people here pulling for you!
Yeah unfortunately this is life with lupus. Fun, isn’t it? The blue hands is called raynauds. It’s a circulation problem common in lupus patients.
I was diagnosed my second year of teaching. I applied for a reasonable accommodation from the school district which helped me stay employed for the next 22 years! I had major problems with my hands and could not do things that required fine motor skills. I used a wheelchair on field trips and on the playground as another way to conserve my limited energy. I had to limit my sun exposure and conserve my energy for the actual teaching part of the job. I was assigned a 6 hour assistant to be my hands and legs on campus.
You may benefit from a similar accommodation. I worked with an Occupational therapist too. She really helped me make my classroom Lupus flare friendly.
Good wishes!!
Tell me about it ps...it's one hell of a nightmare especially with joint and swelling issues :)
ps said:
Yeah unfortunately this is life with lupus. Fun, isn't it? The blue hands is called raynauds. It's a circulation problem common in lupus patients.
Tez_20 you said it! I’ve had Lupus, Connective Tissue Disorder and Sojgrens since I was 13 yrs old I’m now 46. I have severe raynauds. In the past 2 yrs I have noticed things are getting worse for me. The only organs not involved are my kidneys and liver. I was diagnosed last year with Gastroparesis due to my Lupus. I’m so darn tired all the time. I’ve lost and keep loosing weight. If anyone can help me with any of my problems please help! Protein is now in my urine because of my malnutrition. 
Protein in the urine -- have you been tested for amyloidosis?
http://www.mayoclinic.com/health/amyloidosis/DS00431/DSECTION=symptoms
Hello Smile,
Don't get thinking all your issues are down to Lupus as i have sjogrens badly and i recommend joining our other site for sjogrens because looking through the discussions you'll see some interesting symptoms on the condition. www.sjogrenssyndromesupport.org
It's funny but we have a fare bit in common i'm coming 45 this year and was born with the lot, A1 Diseases overlapping autoimmune diseases where it causes alot more complications for us.
I have organ involvement lungs, kidneys, liver and they dehydrate to where they shrink and with a flare expand and cause excruciating pain and the loss of weight can be th lupus plus thyroid trouble...do you have secondary sjogrens as this causes more severe complications and you need to know if one of the diseases is mostly taking control of your body, as Lupus and sjogrens was fighting my blood stream and my rheumo last time i saw him said sjogrens was getting severe.
Your gastro problem with cause weight loss IBS does it and also Celiac disease...smile you'll find this link interesting about Gastroparesis besides it causng muscle weakness and sjogrens also cause Muscle Atrophy (Muscle wastage) which i have also...all these issues need to be addressed with your rheumo.
http://gastroparesis.webs.com/complications.htm
This links about malnutrition and other reasons with the urine :)
http://www.lupusmctd.com/index.php?topic=371.0;wap2
Smile45 said:
Tez_20 you said it! I've had Lupus, Connective Tissue Disorder and Sojgrens since I was 13 yrs old I'm now 46. I have severe raynauds. In the past 2 yrs I have noticed things are getting worse for me. The only organs not involved are my kidneys and liver. I was diagnosed last year with Gastroparesis due to my Lupus. I'm so darn tired all the time. I've lost and keep loosing weight. If anyone can help me with any of my problems please help! Protein is now in my urine because of my malnutrition. :(
Lisa,
That's nice to hear, because there are many employers that won't help.
Lisa said:
I was diagnosed my second year of teaching. I applied for a reasonable accommodation from the school district which helped me stay employed for the next 22 years! I had major problems with my hands and could not do things that required fine motor skills. I used a wheelchair on field trips and on the playground as another way to conserve my limited energy. I had to limit my sun exposure and conserve my energy for the actual teaching part of the job. I was assigned a 6 hour assistant to be my hands and legs on campus.
You may benefit from a similar accommodation. I worked with an Occupational therapist too. She really helped me make my classroom Lupus flare friendly.
Good wishes!!
Look into getting a co-teacher for your classroom or changing to another position within the school to accommodate your medical condition. Look into ADA accommodations. Sorry, you passed out.
Hello, I think we all go thru phases of feeling bad, blue, confused. Terri is right in her reply to you. Some may encounter other diseases due to lupus but thats not always the case.
Hi, take a deep breath and try to rest when you get home from work before you start doing things at home after work. Remember you have to give your body a change of pace. Don’t over do things -if something can be put off to the weekend , do that , at least 2-3days a week (make a schedule for yourself). And work this for home until you can just do things with out thinking about doing it. This works for me alot, having time for yourself to slow down and take breaks is what I will say , is our moment to catch up and re-adjust …Beverly L.