[Morphia]

I'm a 23 year old female and for about three years now I have been sick with no explanation. I have severe fatigue as my main symptom. It gets soooooo much worse after exertion and at the end of the day. But some of my other symptoms include a light to medium red rash over my cheeks and nose that itches and burns almost every day. Some days its ok and some days its worse. I also get irritation on my forehead and it makes my eyebrows fall out. The dermatologist has diagnosed it as seborrheic dermatitis and put me on a steroid lotion that seems to be helping. One of my other troubling symptoms that I would particularly appreciate someone chiming in on is a recurring, painful ulcer that shows up in the EXACT same spot towards the back of my mouth. I used to get it monthly right before my period then it went away for about a year and a half. It reared its ugly head about 2 months ago though. I find when I do get it my other symptoms get worse. Particularly the rash on my face.

I've had sed rates and ANAs done so many times that come back normal. But one test that showed something wrong was my vitamin d. I have pretty bad vitamin d deficiency that I can't seem to get corrected (especially since the sun causes me fatigue) and have decided to try a tanning bed. I keep thinking if I get my level up that maybe my symptoms will disappear. But I've read that tanning beds could in the worst case scenario be lethal for people with lupus. I don't know if I have it or not. Everyone keeps telling me I don't. But I feel like I do. I'm supposed to go sign up for a membership this weekend but am afraid of what might happen if I tan.

Do my symptoms sound like something to worry about? And as for that ulcer, do you guys ever get painful ulcers that recur in the exact same spot like that? And are malar rashes supposed to behave like that? Everything you read about them says nothing about irritation.

Thanks everyone.

 

[LolaLola]

Morphia, my skin is under control with treatment, but when it wasn't I used to feel like I wanted to pull my forehead off. I really do not think a Tanning Bed is a good idea. Don't forget blood tests can take a long time to show up, mine did!
There is no reason why you cannot be treated for lupus like illness even before the bloods show it.
x Lola

 

[Clare.T]

Welcome to the forum Morphia !

About the lupus possibility, do you not have any symptoms such as joint aches and pains and are all the usual blood tests normal, apart from the vitamin D deficiency? Sebhorrheic dermatitis is sometimes confused with discoid lupus, although of course in your case I wouldn't know, and SD is sometimes found in lupus too.
I am thinking that if the symptoms you mention are the only ones they would be unlikely to get you diagnosed with lupus. People who get diagnosed with negative bloodwork have weighty symptoms to support the diagnosis and usually need evaluation from lupus experts. I wonder who first mentioned the possibility of lupus. If it was a doctor then you could ask for a skin biopsy.

The Vitamin D deficiency is a potentially serious medical problem and needs treating by a doctor. Perhaps it's causing some of your symptoms. It can certainly cause joints aches and pains as well as muscle weakness and also fatigue. If diet and supplements don't correct it, calcium injections might work faster. If not, then the possible causes need investigating.

I dont think it's a good idea to start do it yourself treatments.
If UV therapy was medically recommended for vitamin D deficiency then I think we would have heard of it. It would be done under supervision and the amount and type ( 'wave length' or something) very carefully controlled.

UVA1 treatment is used in certain specialist dermatology units for a variety of skin conditions and has been reported as effective as a useful supplemental or adjunctive therapy for SLE and possibly skin lupus. This is absolutely not the same sort of UV used in tanning salons.

The amount of sun exposure required to maintain Vitamin D production is very small indeed. Typical recommendations are 15 mins 3 times a week or a daily walk to your mail box ( US style mailbox ) in the summer months.

By using a tanning bed you would probably be getting far more than needed and risk damage of some sort or another. The UV rays are not the same as the sun's.

Tanning beds have a different ratio of UVA to UVB radiation as well as a different overall UV spectrum than sunlight does. Furthermore, the radiation levels are more intense, requiring individuals to limit their exposure to very brief periods. One study found that the amount of UVA radiation, which penetrates deeper into the skin, was anywhere from about 3-8 times greater in the tanning beds than in the light from the sun.

From

http://en.wikipedia.org/wiki/Sunbed

If you do have lupus you certainly risk making it much worse.

I hope you can access good medical care to get the vitamin D deficiency dealt with. Please let us know how you progress.

Bye for now and good luck

Clare

 

[Morphia]

Hey, Clare and Lola.
Thanks for the responses!

Clare I do want to say that I'm already being treated for it and its not working very well. I'm on 50,000 IU of vitamin D once every two weeks. Initially I started on 50,000 IU once per week. There was a time when my levels were good. I still felt sick but all of my aches and pains were gone and the fatigue was much better. I can feel it getting low again. I can feel it in my bones, literally. But the main reason I want to do a tanning bed is because 1.) I've read in several different places (via google) that tanning beds are starting to be seen as a safe source of vitamin d when done in moderation. 2.) My insurance will be gone in less than a month. I don't need insurance for a tanning bed. But I need it for my pills. If a tanning bed could help to correct this deficiency and give me my life back I would never need another prescription again. Its so tempting. But at the same time I have no idea for sure what is wrong with my body.

As for the joint pain, I have some in my hips. The rheumatologist just diagnosed it as bursitis and gives me celestone shots in my joints.

 

[KarolH]

Hi Morphia,

Vitamin D deficiency seems to be a common problem and not just with people who have Lupus. I am glad your being treated and I am sure with time your levels will improve.

As for the tanning bed........JUST SAY NO!!!!! Even without Lupus it is just not a healthy choice. If you want a tan then buy one in a bottle.:wink2::wink2:

Hope to get to know you better.

 

[Maia]

I would not get a long term membership with a tanning salon as you do not know how you would react. If you could buy just a select number of minutes (maybe 30 minutes) and go in for 5 minutes, then 6 minutes, then 7 minutes, and so on... then that would give you a nice brief trial to see how you would react to it. Going in 2-3 times a week for a few weeks would be enough to see how you react to it and possibly see if it helps the vitamin D levels. If you live north of Georgia in the US it is about impossible to manufacture enough vitamin D in the wintertime so you need to supplement with it.

In your case, with supplementation not appearing to correct it I would have to wonder if you have trouble absorbing it through some intestinal tract problem, or if there is a problem with the parathyroid gland which controls many body functions including vitamin D production and blood calcium levels. Have they looked into your parathyroid functioning via bloodtests yet? It's worth investigating b4 you lose your insurance.

Good luck - hope you can get some health insurance back soon and get these problems sorted out and treated/cured, whatever they are!

 

[LolaLola]

You American girls have it so hard with all the worry about medical Insurance.
I really feel for you being ill is enough without constant worry.
x Lola