I possibly have Lupus.......Feel like I'm going CRAZY!!!!?!
Question: I have felt like crap without relief for close to a year. It's always something. I have recently been discussing all of these "ailments" with my Dr. trying to impress upon him that it all makes sense to me now. I would like to list my symptoms.
I would only like answers from people already diagnosed with Lupus please.
IBS
vertigo
nausea
memory loss
weakness in hands and forearms
vison changes
short periods, every 3 weeks or so
my legs, ankles, and feet ache
stiff in the a.m.
moody
mild swelling
thirst
blisters on back of tongue (twice)
prickly fingers and feet
complete vitamin deficiency, esp. b-12 and folate
fatigue
my shins burn in the sun, turn purple with swelling (that was the tip off for me)
It started with the sunburns about 4 years ago, I thought maybe it was an allergy to the chlorine in the pool. (it wasn't)
I'm I crazy, or does it really sound like Lupus?
I start the blood work next week. I just want to make sure I am not going in the wrong dir.
Answers: I have felt like crap without relief for close to a year. It's always something. I have recently been discussing all of these "ailments" with my Dr. trying to impress upon him that it all makes sense to me now. I would like to list my symptoms.
I would only like answers from people already diagnosed with Lupus please.
IBS
vertigo
nausea
memory loss
weakness in hands and forearms
vison changes
short periods, every 3 weeks or so
my legs, ankles, and feet ache
stiff in the a.m.
moody
mild swelling
thirst
blisters on back of tongue (twice)
prickly fingers and feet
complete vitamin deficiency, esp. b-12 and folate
fatigue
my shins burn in the sun, turn purple with swelling (that was the tip off for me)
It started with the sunburns about 4 years ago, I thought maybe it was an allergy to the chlorine in the pool. (it wasn't)
I'm I crazy, or does it really sound like Lupus?
I start the blood work next week. I just want to make sure I am not going in the wrong dir.
Some of your symptoms are common to lupus, others are less common. All of them can be caused by disorders other than lupus.
An important clue is the IBS and the vitamin deficiencies, as well as the prickly hands and feet. Has anyone checked you for Celia sprue? It sometimes comes in overlap with lupus and those are classic IBS symptoms. While you are waiting for results you might consider eliminating all gluten from your diet. In susceptible people, gluten cause inflammation which cause pain. Google gluten for ideas about this.
Here is what you can do right now:
1. Rest as often as you feel you need it. Being "super person" is only going to make things worse. You fix being tired by resting not by fighting it.
2. Keep a symptom journal. In your case, I would also track what you eat. I believe you will find some clues in your diet. Your journal should describe these things.
a. What symptoms you are having
b. The severity of symptoms
c. How often they occur
d. How long they las
e. What makes them feel better
f. What makes them worse
g. What activities you did that day
Before you see your doc, make a summary of these. The doc will NOT read your whole journal.
3. Adopt a healthy, balanced diet. Have lots of fruits and veggies, avoid animal fat, eat cold water fish like salmon for the omega fatty acids. Avoid processed foods.
4. Get some mild to moderate exercise every day. It reduces pain, relieves fatigue, and improves mood.
5. Stay out of the sun. If you must be out, cover up with tightly woven shirts and slacks. Wear a hat and use sunscreen.
6. Don't borrow trouble. It's easy to get all worked up and try to figure things out by yourself AND how to fix it. What happens is you create more stress which agitates the immune system which makes you feel WORSE. Practice asking yourself "What's important right now?" Is it being present with your loved ones or being there but not really because your mind is elsewhere. If you waste this minute on worry, you can't get the minute back-ever. And it won't change your medical condition one iota.
7. Learn stress management techniques like yoga and meditation.
8. Be proactive about your health instead of reactive.
There are about 80 autoimmune diseases. The ANA or antinuclear antibody test is one diagnostic clue. Your doc is doing exactly the right thing.
Do not, I repeat DO NO go into the doctor's appointment already having decided what the diagnosis is. You will tick off the doctor and be dismissed as a kook. At this point, your job is to give the doctor diagnostic clues by communicating your issues clearly and succinctly. That said, if the doc does not mention celiac, you might mention it casually.
In another section write down EVERYTHING you eat. Then notice how some symptoms may be related to what you ate. Bring this to the attention of the doc.
Sometimes people have symptoms of this or that but it doesn't mean that they have a disease. The best thing for you to do is see your family doctor. Your doctor is the only person who can tell you if you have Lupus or not. And if your doctor feels that this could be the case then you'll need to go for a blood test. And if your doctor is not helping you out with this then maybe you should see someone else. There could be many reasons why you have all those symptoms but it doesn't mean that it's Lupus. There are other illnesses with the same symptoms similar to Lupus so put pressure on your doctor to get to the bottom of this. Good luck.
alot of autoimmune diesease are similar, but go in anyway, it was like that for a year before i got dignosed and i nearly died becasue of my so called phantom feelings that where all to real once they all manifestied all at once. the doctors where finally able to place it together, and the test may not come back positive and that doesnt mean you dont have lupus, i never had short periods i always had flares before mine came, even looking back as a kid the week before my period i knew it was coming because i got increased back pain and my period always lasted long 7*10 days but you can have different symptoms, before i was dignosed my knees would burn too, i get blisters or sores in my mouth i also have raynauds so my hands get cold and purple at times, fatigue was one of my main complaints before meds, but my fatique was to the point where i didnt wake up for days, now i call it the death sleep, and then i went to the er and i didnt leave i had a rash on my legs and arms that looked like dragon scales, so the rash doesnt have to just be on your face it can come out whereever it wants, so you go to the doctors and let us know but it sounds like you have alot of the signs ,look at www.lupusofcalifornia.org it will show the 12 things the doctors look for.
I have the same exact symptoms as you do. I do have positive ANA but no lupus. My periods go for about 1 week or longer and I am also low on vitamin B-12. My ankles and feet and lower back hurt like crazy. I also hurt under my ribs and I'm always geting UTI's. Someone told me I could have Chrones Disease or Celiac Disease. I've even been told I have Lyme disease and Fibromyalgia. I have no idea what we have but I do know we have the same symptoms. I don't think you have Lupus but you probably have an autoimmune disease like I have. My Dr told me until we find out which one I have, to take antioxiants which includes, Vitamin E,Green Tea, etc and make sure you build your immune system up. Please email me. Do you ever get Cyst on your ovaries? I get them alot and was wondering if any of this was connected? My mom said I could have thyroid disease but all of my sister and her have it. Good luck and please email me ot add me to your messenger:)) God bless!!
When I was diagnosed with lupus, and it was just mild lupus, all I had was lethargy that I felt was extreme along with fatigue, anemia, some arthritis, and the butterfly rash. And then before actually going to the doctors I had swelling in my foot. And I did get very emotional at little things. Don't know if I have memory loss, though my parents thought I might. Couldn't have my periods at all because of being anemic.
I'm not allergic to sunlight, but I heard that a lot of lupus patients are. So sorry I'm not one to figure.
Oh and make him take the Anti-Double-Stranded DNA antibody test too.