View Full Version : Questions about Lupus
03-10-2009, 11:30 AM
Hello, I am a 33 year old male. I have a few questions and would like to ask all of you. I understand that you are not doctors, but I feel like the doctors here are not really trying to get to the bottom of what is wrong with me. I have had a new symptom lately. When I stand and have my arms hanging down my sides. My hands turn really red. If I raise my hands above my head, then my hands will go back to the original color. It is very scary. I brought it up to the doctor, but he did not feel like it was important. I am an Air Force Recruiter and have noticed that other people will look at my hands in shock because they are so red. It is very bad. I try to raise them above my head often to keep them looking normal. Does anyone have this problem?
I have noticed on a lot of websites that state that most people with lupus live a normal life. I would like to have your input on that?
The doctors are still not sure what is wrong with me. I was trying to stay in recruiting just in case, I have lupus, because my other job is refueling planes in the Air Force. I just foundout that I have to move to England and will refueling planes. I am very scared of the physical part of the job, as well as being exposed to the outdoors but no one wants to listen. Do any of you work physically demanding jobs? How do you do it?
Any answers to these questions will be a big help. You are all great people and deserve the best things that life has to offer. I would like to give a special thanks to the moderators on this site for taking the time out of there personal lives to help others. I really enjoyed looking at some of the photos that some of you posted on this site. It is nice to put a picture to who is replying to these posts. It is people like you, that make me feel proud to serve this Country. God Bless you all!
03-10-2009, 11:39 AM
Hi, it could be Raynauds. I have that. Alot of people with Lupus do. Its something to do with circulation and constriction of blood vessels. Does yours get worse with cold? Like purple and painful. Just suggestion. Hope I helped. Besides appearance and some pain with temperature changes it doesn't bother me to much. If its from cold slowly warm hands back up. Kathy
03-10-2009, 12:05 PM
It seems like it happens more when I get inside a wal-mart or in my office at work. If I am outside, my hands look and feel fine. I really think it is a blood circulation problem, but I can't pin point it. Just wondering if anyone else has the same thing? Thanks!
I have the exact same problem with my feet. They are often times a bright red, and elevating them is the only thing that makes it go away. They get cold, and almost nothing will warm them up. Also, the skin on my ankles is like leather. No sensation either. I'm "between" rheumotologists right now, so I haven't pursued the cause of this yet. And with all the other problems I have, the red feet were not at the top of the list, but this post has me thinking about it, and I need to get it checked out.
It worries me, as that bright red coloring indicates cyanosis, or lack of oxygen. Since oxygen is transported via the bloodstream, I'm afraid in me that it points towards a circulatory problem. When I get in to see a new rheumo, it will be the first topic I'll bring up.
As far as a normal life goes, my life has never really been normal, and I don't mean it all was bad. I was in the Army for a few years, I used to be a crewman on an M-1 Abrams. After that, I opened my own business in the field of smallarms design. It was both physically, and mentally challenging. I had been working in the firearms industry for about sixteen years when I started to have cognitive problems. I'd forget how to spell, how to speak certain words, and I suddenly found myself forgetting the knowledge I needed to perform my job on a daily basis. In a work environment that involves a factory floor with machinery, as well as a test fire range, there is absolutely no room for carelessness, and I was becoming a safety hazard. I had to quit working and sell the business. I now have neverending flares that keep me from doing even the most basic types of jobs. I have one, or two days a week usually where I'm able to do things, but I never know when those days will be. Basically, I am unemployable.
I recieve full Social Security disability now. It was very hard to adjust to my new life. No work, the daily fear and frustration, as well as the pain of a chronic incurable illness. So, I've adapted and adjusted the best I can, and I've learned to live with my "new normal". I certainly don't lead a bad life, I just have to realize I'm not the same person I used to be, and accept it.
Sounds Like you have an interesting job coming up with the refueling tankers. We have a base here where KC-135's operate out of. I'm sorry you are having such apprehension about this upcoming job, and posting in England. Everyone with this disease is different. Some of us cannot do any sort of strenuous work, while others here work a regualr job without too many serious problems. The disease is as individual as the person.
I'll be at the med center tomorrow and I'll track down my GP and ask him about the red feet/hands problem, and let you know what he says. He's pretty sharp, and down to earth, so I trust his advice and info. Hang in there the best you can. I'll talk to you later and let you know what I find out.
03-10-2009, 03:33 PM
I get either really red hands and feet or really blue hands and feet. They're either hot or cold in other words. I have to agree with the others on it being bad circulation. Another wonderful part of Lupus.
I had to quit my job as a personal fitness trainer as of right now. My symptoms are getting worse by the day so it definately interfered with my job(and my life in general). I still exercise but not like i used to. It DOES help but i am limited. Its an adjustment because im a very active and get-things-done kind of person. Its hard to except your body shutting down.
I want to THANK YOU for your service to all of us and our country. Youre a good person and youre VERY APPRECIATED!
03-10-2009, 03:49 PM
If you could talk with your GP, That would be great! I am in a small town and the doctors here are really bad. We just got a rheumatologist and it seems like she does not know what she is talking about. It kills me that when I go see her, she pretty much leaves it up to me to diagnose my-self. She said that because I have a positive ANA, low WBC and a positive SSA that it is SLE/Sjorgren's. She has never done anymore testing on me. My last blood work that was done, was back in Oct. I have another question for you? My main symptoms are gastro, cognitive (which I have found that it was comming from sinus, I use the netti pot once a week and it really seems to help), and nerve problems. The nerve problems are the worse right now. If I stand on my feet for over an hour, my legs will start to shake and my middle back will start to hurt, like a spasm. Thanks again for taking the time to answer my questions.
03-11-2009, 04:40 AM
first thing, i kind of question if you have lupus or not, because lupus generally doesnt effect men. 9/10 times its women.
but then again, i seem to defy the odds as well, since statistics say that it doesnt usually effect people until they're 20's or so ...
and im only 16. lol
with your hands, im thinking that it could be raynauds...
i have that. when i hold something cold, or go outside if its cold, my hands will get really red and then blue-ish... along with my feet. and it doesnt matter if i have gloves on, it still happens.
then they kinda go a little white....
then go back to red.
its weird, and there is nothing that you can do for it either.
what are your other symptoms that are leaning you towards thinking you have lupus??
03-11-2009, 06:30 AM
as you can see, many of us suffer from discolored hands and feet. This was one of the first indications that i had that something was wrong.
as far as "A normal life", i read that tooo....all i can say is normal changes with lupus. I have also heard "people with lupus have good days and bad days" this is because we often say "i m having a good day today", but in reality, we still suffer with the symptoms, sometimes they are endurable, and sometimes they are not.
As far as your upcoming job in Germany (first let me thank you for serving our country....i appreciate you guys), have you noticed any reaction to being in the sun. If i am even out in the sun for just a couple of minutes, I start to get flare symptoms....you might want to really think about this before being out all day.
good luck, hope you have a good day,
03-11-2009, 08:06 AM
Thank you for your service. I'm a vet and have a son that is a recruiter in the army. It took 6 months for the VA to diagnose my Lupus. Stay after them because it is rare for us to have Lupus. Get the dermatologist to do the blood work. Insist or even demand it. It took me 5 phone calls with the VA advocate to get the appointment. If you can go to a civilian dermatologist you might get better care than through the military system.
I know how demanding being a recruiter is but you would be better off to stay as a recruiter if you have Lupus. Once the Air Force finds out you have Lupus they might discharge you. I would find out as much information about getting 100% disability if they do medically discharge you. Working with the VA system is a up hill battle.
From the little time I have been on here it seems to me that the men here that have Lupus are all vets. Makes me wonder if there is something that has started this health problem while in the service.
03-11-2009, 05:59 PM
I can't say that I live a "normal" life with lupus. I have had to slow down my pace of life a lot. I get fatigued easily. I can't work a full time job. I was lucky to be able to handle part-time for as long as I did. I was a substitute teacher. Luckily, I am only about a year away from retirement. I used to love to tent camp. I have had to give that up. I am glad I wasn't a sports-type person because if I had been it would have been hard to give up sports and a real active lifestyle.
Not only to I have to deal with the lupus, but like a lot of others here on this lupus site, I have other health concerns to boot. I was able to deal with my lupus when I was younger, but now that I have gotten older, it is really difficult. Now my mental acuity is not as good as it was in the past. I forget things easily and have to write down everything. Otherwise, I would forget to take my medication, would forget Dr. appts. and other important things that I would really need to remember to do.
Lupus affects each of us differently. Others may say they live a "normal" life. I don't think mine is "normal". Especially, if "normal" means living without this illness and other health concerns.