hey gang!! As some of you already know I have been sick and missing my workouts and they couldn't find out why we couldn't wipe out this "bug"..well its lupus. I've been running a temp for eight weeks now and have become "decatheized" ( deconditioned) haha..I am trying to keep up my humor and my spirit and would like to get back to exercising..any of you have lupus?? Is it OK to workout while having a "flare" and a low temp (100.1-101.5)? Just wanting to feel "normal" again, dont want to fall into the "poor me" slump, I want to go about things as normal as I can!! People are already treating me like i am "incompetent"..I know they mean well, but you dont want to be "different"...I guess i am bummed..any advice would be welcome (especially from others who deal with lupus) thanks:7
Just diagnosed with lupus
- Thread starter groundhog
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I have a friend with Lupus and she tries to stay as active as possible so that she doesn't have flare ups - I can't say whether doing a workout w/ a temp is a good idea, I'd ask your dr. Maybe go to ivillage.com and see if they have a Lupus message board or check webmd.
Take care and wear your sunscreen!
Take care and wear your sunscreen!
Hey..
I read your post regarding your recent diagnosis of lupus. I was sadden to that you felt so terrible for the past 8 weeks but hope that your doctor(s) diagosed you in time.
My helpful advice are take your medications always, wear sunscreen or big hat outdoors. The reason is a typical person with lupus tend to have some sort of heat rash or general rash when outdoors. Stay relax and avoid stress..have some level of family or friend support.
I hope your doctors diagnosed in time. My sister-in law was diagnosed when she was 44 years old and died at the tender age of 45. She died about 6/7years ago. This is a serious and deadly disease. Some of the signs she was exhibiting was "blue, icy fingers and heat rash when outdoors". She also had a history of being easily sick. Our family only regret is that she did not have the necessary medical care earlier. With appropriate medical care and medications, you can live a long and healthy life.
Please do not take this letter as a reason to be depress or to lose all hopes of getting back to normal.
Please fight and do not let this disease kill your exercising spirit.
Mrs. HTK
I read your post regarding your recent diagnosis of lupus. I was sadden to that you felt so terrible for the past 8 weeks but hope that your doctor(s) diagosed you in time.
My helpful advice are take your medications always, wear sunscreen or big hat outdoors. The reason is a typical person with lupus tend to have some sort of heat rash or general rash when outdoors. Stay relax and avoid stress..have some level of family or friend support.
I hope your doctors diagnosed in time. My sister-in law was diagnosed when she was 44 years old and died at the tender age of 45. She died about 6/7years ago. This is a serious and deadly disease. Some of the signs she was exhibiting was "blue, icy fingers and heat rash when outdoors". She also had a history of being easily sick. Our family only regret is that she did not have the necessary medical care earlier. With appropriate medical care and medications, you can live a long and healthy life.
Please do not take this letter as a reason to be depress or to lose all hopes of getting back to normal.
Please fight and do not let this disease kill your exercising spirit.
Mrs. HTK
Fellow lupian here. I've been dealing with it for almost 20 years. Every person is different, but my med team insists that I work out. They tell me the medications I take will not work if I forego exercising. If I don't work out, after 3 weeks I lose the ability to walk.
While you are running a fever, I personally would wait until the fever goes away and inflammation dies down and then gradually work back into a program.
While my doctors have me on an intense program, it may be different for someone else. One thing they all insist that I do and that is Pilates. An added benefit was getting flat abs.
When a lupian is in a flare, (as you are in right now...also myself for two years!) the numeral uno thing you need to do is get out of the flare as quickly as possible. When you are in a flare, the lupus is on the move, and you want to get it into remission. Once in remission, it can stay that way for years.
Your best friend will be your doctor(or team of doctors) who has training in lupus(make sure they have been schooled for both DLE and SLE lupus)and will work with you in getting you in remission.
An easy thing to say, hard to do is try to avoid stress. Stress is horrible for a lupian. Been there done that!
It is about learning what your triggers are, how to pace yourself, and what it take to get out of flares.
Email me if you want.
While you are running a fever, I personally would wait until the fever goes away and inflammation dies down and then gradually work back into a program.
While my doctors have me on an intense program, it may be different for someone else. One thing they all insist that I do and that is Pilates. An added benefit was getting flat abs.
When a lupian is in a flare, (as you are in right now...also myself for two years!) the numeral uno thing you need to do is get out of the flare as quickly as possible. When you are in a flare, the lupus is on the move, and you want to get it into remission. Once in remission, it can stay that way for years.
Your best friend will be your doctor(or team of doctors) who has training in lupus(make sure they have been schooled for both DLE and SLE lupus)and will work with you in getting you in remission.
An easy thing to say, hard to do is try to avoid stress. Stress is horrible for a lupian. Been there done that!
It is about learning what your triggers are, how to pace yourself, and what it take to get out of flares.
Email me if you want.
dixiedog6
Cathlete
I admire your attitude and think it will go a long way in minimizing flare ups. my mom had Lupus and finds that when she gets tired, or stressed, she has a flare up. It takes her a long time to get well again. You've gotten wonderful advice from everyone. Take care of yourself.
Just popped in to add, do your research as to what kind of lupus you have. The Discoid lupus affects the skin,(big time) hence the advice to avoid the sun...but SLE (which I have) is mainly cartilage or connective tissue. While SLE can affect the skin, it most often stays unseen but felt. Some of the meds will give you a rash when being in the sun as well. Discoid will give you more than a rash.
Just to let you know there is a difference between the two.There is a lot of misleading information out there. Research, research.
To add to Mrs. HTK, lupus can and does kill. I lost two friends from lupus complications. When it reaches an organ is when it become dangerous. Most lupians die of kidney failure. Thankfully there is more awareness and better treatment than in the past. The meds are not without side effects; that is why it is important to work with your team. Thankfully, I have not had to use the high-powered drugs for lupus, as yet, but they do help with getting on with life.
There is much better lupus testing today and again, your doctors will be a good guage for you to go by; in addition read everything you can that applies to your particular kind of lupus.
Just to let you know there is a difference between the two.There is a lot of misleading information out there. Research, research.
To add to Mrs. HTK, lupus can and does kill. I lost two friends from lupus complications. When it reaches an organ is when it become dangerous. Most lupians die of kidney failure. Thankfully there is more awareness and better treatment than in the past. The meds are not without side effects; that is why it is important to work with your team. Thankfully, I have not had to use the high-powered drugs for lupus, as yet, but they do help with getting on with life.
There is much better lupus testing today and again, your doctors will be a good guage for you to go by; in addition read everything you can that applies to your particular kind of lupus.
Do research and find different forums to visit. My cousin, who was diagnosed at 14 died in July at the tender age of 50 of Lupus complications, but she said she had so many friends around the world because of forums from fellow diagnosed Lupus buddies and that made her really happy. Whenever anyone was having a problem there was always someone to talk to.
I have a couple other cousins with Lupus and they are living full lives. One is in remission and you would never know she was sick, she runs around with her kids and is very active.
Keep your chin up, we are all here too. I myself am not all that familiar with the disease but if you need motivation, this is the place to be : )
Rhonda
I have a couple other cousins with Lupus and they are living full lives. One is in remission and you would never know she was sick, she runs around with her kids and is very active.
Keep your chin up, we are all here too. I myself am not all that familiar with the disease but if you need motivation, this is the place to be : )
Rhonda
thanks for all your info... It does make me feel better to talk about it. I do agree with one of the previous posters that there is conflicting info out there (I'll PM you). I am totally going thru cycles of disbelief, to pity, to courage, to hopelessness. I am sure this is all normal. Trying to keep a chin up here and anxious to get back to Cathe (gotta be ready for those new DVD's coming out...OUCH!!! I will take the advice and try to find lupus forums, that will probably help my mental status and good for collecting info...thanks