I'm lucky that my scars can be hidden by clothing. If on your neck or face you can hide discoloration with facial makeup. There is a makeup on the market that is almost like spackle in that it is thick and can be applied over scars to blend them in evenly. My sister had very bad acne as a teenager and uses this make up to cover he scars which are pretty bad. I will have to ask her for the name brand.
Don't give up, it took ten years to get a diagnosis for me. I went to the doctor every few months with rashes, fatigue, hair falling out and cysts. They didn't seem to care. I finally got mad and demanded a referral to a dematologist and she was the one who said it looked like an autoimmune disease. She order a simple but expensive round of blood tests.
I was then sent to a rheumatologist who tried to brush me off with a prescription and it felt like she didn't care. On the off chance she asked if I had ever had a cyst. I did of course and said I had one on my leg currently. Had it biopsied and got my answer, SLE.
Now they take me seriously and of course I feel better but have to take a massive number of prescriptions daily. Keep at them, don't let them tell you your crazy or a hypochondriac. It's your life not their's and you have to keep fighting.
I've had shingles and they are horrible, I feel for you. My doctor told me that shingles usually occur in older people hence the vacine wasn't for me. I have no idea if the Zostovax will help. It sounds like you have it bad.
I hope things get better or at least the doctors can find a solution to lessen the symptoms.
It is funny that you said you feel swollen around your middle section. I had this feeling before my diagnosis and beginning meds. It is gone now after a year and a half of medication. I never related the two.
For your symptoms to be controlled you might need something stronger or different than prednisone. My rashes did not respond, I only felt anxiety, sleeplessness and bloating with prednisone. There wasn't a cream on the market that made the rashes go away. I tried plaquanil for the skin condition, still do and it works great. It is affordable and has fewer side effects than some of the other meds for lupus. Talk to your doctor, they might go for it.
Thank you so much for your words of encouragement. It is hard to get our guys to take care of themselves, diet, exercise, medications. If a lupus sufferer is lucky and does the latter they can sometimes keep their condition under control with minimal flares. I know I do the best I can and watch myself carefully. I just wish my hubby would do the same.
I took over his medications recently because I thought he was taking them in the wrong order and too many of a couple. After one week of my organization he feels better. Funny how that works.
Men prove everyday that women are the stronger sex, at least in my household.Thanks again for letting me vent.
I was diagnosed with SLE over a year ago after fighting with doctors for 10+ years. I don't feel 100% but I do feel better. My meds help with the symptoms and pain. I still get severe fatigue, nausea and stomach pains (from the meds), but I can manage, most of the time.
Unfortunately my husband was diagnosed with MGUS a precancerous condition. He doesn't have cancer at this time but will require constant monitoring like me and my lupus. The problem is he is draining. Those of you with husbands who have had colds know what I mean. While I don't want to discount his condition, it can be painful, he whines constantly.
He is also not helping to take care of himself. Where he once took care of certain business dealings he no longer does them. I have taken up a lion's share of the business and I'm getting exhausted.
I guess that is my vent. Just as most lupus sufferers I try and maintain a stiff upper lip, muscle through the pain and keep on keeping on. I just wish my husband would at least try.
Pain is the constant companion of those with lupus. I had pain before I was diagnosed but pain alone doesn't help to diagnose. There are tests that can be run to determine if you have something going on with your autoimmune system. An ANA test is one. Talk to your doctor.
Regarding prednisone, I couldn't do anything when I took it. It made it hard to sleep and I was irritable. Being tired and irritable are not a good combination for teachers. You can try it to see if it works and reduces inflammation right away, just be aware you may not feel so great.
Well that's just awful, sorry to hear about your loss. I don't give a lot of credit to that phrase of what God gives us being correct. I think most of us who suffer from SLE are ready to collapse and really aren't that tough.
Yes I experience the same thing. Usually when I'm resting I will get very chilled, shivering and then go take my temp, it will be raised. It kind of feels like you have the flu. It happens most often right after I've been active.
Many who have a diagnosis of SLE struggled for years to get their answer. I went back and forth with several different doctors, even being sent to a therapist because they thought I was a hypocondriac. Got a confirmed diagnosis a year a half ago after 10 years of going around and around with doctors.
You can try another doctor but make sure they really know autoimmune diseases. Sometimes a dermatologist is a good place to go especially if you are suffering from rashes or lumps as I was.
Unfortunately, finding an accurate diagnosis quickly is not how this works. There are too many autoimmune disease out there and they mimic each other. Keep trying and if you stay on your meds things are bound to get better. Sometimes it takes months for the meds to really do their job.