Maybe, Maybe Not..

I posted this in the derm forum with the photosensitivity portion of this post, but I thought I'd ask here since lupus is one of my main concerns:

For the last 15 years, I have had a peculiar sensitivity to the sun.  Since I got my first sunburn at age 15 in Spain (blistering sunburn on the back), I have tried to be very careful about being in the sun without sunblock or being fully covered up.  During my times of lapse in protection, my skin has burned to the point of blistering at its worst and manifesting as bizarre sunburn, non-itchy blotches on my arms (I really don't let my face or my legs get touched) at its best.  

I never really thought about it; I just lived with the sensitivity.  However, after urging by a co-worker I began to research my issue and discovered that it may be a symptom of something more serious, like lupus.  Or, it just may be what it seemed to be: just sun sensitivity, teamed with entering my 30s.

Other symptoms over the years:
1. Frequent urination
2. Sinusitus
3. IBS
4. Fatigue (although not extreme fatigue)
5. Depression, anxiety (medically treated for 6 months several years back, Wellbutrin)
6. Ultra sensitive scalp (I can't use normal shampoos or conditioners; only ones that are specifically formulated for dry and sensitive scalps.  If I do use a normal shampoo, it ends up burning and making me itch my scalp)
7. Sensitivity to some detergents, soaps (but not any bubblebaths)
8. Much lower ability to focus, even watching movies and reading books have become hard for me (despite a life-long love of reading)
9. Can't take hot hot baths or sit in a sauna/hot tub; last month a hot bath kept me on the bathroom floor for 20 minutes while my blood pressure came back up to operating levels (attempts to sit up and walk came with blackouts).
10. Progressively worse (since 1997) allergies (dust, general outdoors) manifesting in sinus headaches, sneezing, runny nose, and itchy eyes.  Started to take Claritin 2 months ago after stopping for 6 months (tried a honey remedy - didn't work).  
11. I'm cold ALL the time.  Cold to the touch, lower than average body temp (97.6F), and it takes a lot for me to warm up (I didn't post this one in the derm board; forgot).

Not saying any of the above are related; just throwing the main ones out there.

I haven't taken any medications consistently over the last 15 years except Ibuprofen.  My symptoms do not seem to occur at any particular time of the year (my worst sunburns occurred in July and August).  Liberal and frequent use of sunblock seems to protect exposed areas (back of neck and hands).  Have had heat exhaustion before.


Anyway, any of this sound familiar?  I'm just looking for advice, not a diagnosis.  Just a, "hey, I have lupus, and you don't sound like you have it" or "hey, I have it, and it sounds like a lot what I went through... maybe see a doc".

Thanks!

[karajo]

Hi there,

I have lupus and fibromyalgia.  I have some of the same things you have...but that doesn't necessarily mean you have lupus.  I'm kinda new to lupus and I'm not sure, but I was thinking the sun sensitivity didn't mean you burn easily.  I know when I get in the sun, it makes all of the other symptoms flare up.  Joint pain, fatigue, etc.  It also makes my face "look" like its burned.  I also have what I call "skin erruptions".  They look like a pimple is forming, but it doesn't.  They go away quickly.  There is another form of lupus called Discoid Lupus.  This causes the skin to look burnt and bubbly.  It looks aweful.  Here is a website where you can look at lupus related skin problems: http://www.lupusguild.org/pictures.html

ultra sensitive scalp ( I too have a VERY sensitive scalp.  I know what you mean!  I just haven't mentioned it to the dr.  They start thinking that you want to tell them every little detail and put labels on your chart)

Instead of going over all of your symptoms, I'll send you a list of symptoms that could be related and let you decide if you need to follow up.

Lymes:
fever, headache, chills, severe muscle pain, fatigue, nausea, vomiting, rash, cough, lymphadenopathy (?), arthralgia (?), stiff neck, erythema migrains (?), leukopenia (low WBC), thrombocytopenia (low platelet ?),elevated AST, elevated ALT & anemia

Rocky Mountain Spotted Fever is another possiblity:
all of the above except no stiff neck, no erythema migrains, and no leukopenia.
(I ended up testing possitive to RMSF)  I was a very sick puppy last year.  Fibro, lupus and RMSF

CFID:
fatigue, headache, short-term memory loss, muscle pain, difficulty concentrating, joint pain, depression, abdominal pain, lymph node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scratchiness in eyes, blurring of vision, double vision, sensitivity to bright lights, numbness or tingling in extremities, fainting spells, light headedness, dizziness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitations, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities or eyelids, burning on urination & hair loss.
reported to follow a # of infections like Epstein Barr, Mono, hep C, lyme, etc.

Fibromyalgia:
muscle pain, morning stiffness, insomnia, musculoskeletal pain, joint pain w/o swelling, fatigue, tingling, pricking or numbness, skin tenderness, light headedness (dizziness), fluid retention, stress or anxiety, poor memory, vocabulary problems, tender points, irritable bowel, chronic headaches, jaw pain, painful menstration, restless leg syndrome

Lupus:
fatigue, hair falling out, sores in mouth and or nose, sores in head or even on your face and other parts of your body, joint pain (sometimes w/ swelling), Raynauds (in some), cold intollerance, occasional hot flashes, muscle aches, nausea, diarrehea, severe headaches, tachycardia, weakness, heavy feeling on chest, abdomen swells, elevated ANA, rash on face. (to name a few)

PLEASE NOTE THAT YOUR ANA CAN BE LOW OF EVEN NEGATIVE AND IT DOESN'T NECESSARILY MEAN YOU DON'T HAVE LUPUS.  THE BEST WAY TO KNOW IS SPEND TIME IN THE SUN BEFORE THEY DO LAB TO CHECK YOUR ANA.  IF YOU HAVE LUPUS, THE ANA WILL SPIKE UP, IF NOT IT WON'T AFFECT IT.

Another possiblity is Celiac Disease.  This is a glutten intollerance and is sometimes associated with an autoimmune disease.  Look up the symptoms to this as I'm not real familiar to this illness other than it can cause joint pain and diarrehea.
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Lupus almost always goes along with joint pain.  The joints more commonly affected are knees, fingers, feet, wrist, ankles, and elbows.  The two most prvelant conditions that almost everyperson w/ lupus has is the joint pain and skin rashes.  The three things that "could" have cold intolerance are lupus, Fibromalgia, and Chronic Fatigue Syndrom (syndrome).  The one that I thought of when I read your symptoms are CFIDs.  What do you think?

Praying for you.  I know how hard it is to have things going on in your body that are complex.  I was extremely sick for 1 1/2 years before getting any help.  They actually gave me med. before the dx.  Which was a blessing.  I NEEDED some releif.  

I looked up in my Lupus bood on allergies.  It said that 10% of the general population has allergies and 20-25% of those with SLE.  Patients with lupus are more likely to have drug, insect and skin allergies as well as asthma.  But allergy shots are not recommended because they can cause a flare to happen.

God bless, KaraJo