can anyone relate?

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red_ironoxide
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/8/2010 5:15 PM (GMT -7)   
hello everybody!
 
i was wondering if anyone here has had similar experiences like i am having now. i have had a history for years of extreme tiredness, rashes on my neck, belly, arms, and chest. round/oval or organically shaped red raised and sometimes scaly, and sometimes itchy.
 
last year i went to my family doctor because i had a rash and i was having joint pain so bad that it was interfering with my job. i am a cake decorater and my elbow was hurting so much. i am only 27 and i couldn't understand why i had arthritis at such a young age. so i forced myself to go to the doctor which i hate doing. in the meanwhile, i started exercising (i am not overweight, i just thought it would help my joints). so by the time i went to the doctor i was feeling a lot better. i was diagnosed with ringworm and prescribed with a cortisteriod cream and it went away.
 
it came back in different locations within a month, which i let go, because i hate going to the doctor.
 
i have been under an extreme amount of stress lately and two months ago overnight my face exploded in an almost symetric rash on my face and neck. i was totally freaked out! it looked awful. i made an appointment with a dermatologist but couldn't get an appointment for a while so i went back to my family doctor. this time he told me i had an allergic reaction. to what? i do not know! i was again prescribed a cortisteriod cream and prednisone. the rash finally went away but the cream gave me acne on my face and i still looked awful.
 
shortly after, i developed another (somewhat symetrical) rash on both my forearms. i didn't try to treat them myself because i wanted the dermatologist to see it. but it started going away after about 2 weeks. now it is flat and looks like round scars.
 
i finally had my appointment with the skin doc today now that my skin looks somewhat normal. i asked him about lupus and he pretty much laughed and asked if my hair was falling out. he told me i have seborrheic dermatitis. he told me lupus symtoms don't just go away on their own, but isn't it a disease of outbreaks and remission?
 
i need help and advice! and i'm sorry i had to write a novel to ask for it. i just don't know what to do next.
 

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 4/8/2010 6:48 PM (GMT -7)   
I hate it when dermo's do that! What he's done is basically admit that he knows nothing about discoid lupus, which is the version of lupus that would be having this much skin involvement. I don't know a lot about the discoid, but folks on here do so hopefully one of them will post soon.

In general, though, lupus is diagnosed by a rhemotolgist, they are the ones who deal with auto-immune diseases, which is what lupus is...so if you have serious questions about lupus, that's who you would see.

What I hear you say pretty much refers to general fatigue, rashes, and once a sore elbow? I personally would probably first check my diet & my sleep -- are you eating healthy and getting enough good sleep? If so, and still having fatigue, have your GP run the normal set of blood tests and go from there & see a rheumy if that seems appropriate. Or it may make sense to check for lyme disease...there are lots of possibilities. If you have regular joint pain, go the rheumy route.

For the skin issues, I'd stick with a dermy - sometimes once you are an established patient you can get in faster. I'd probably try to find a dermy with a better attitude -- laughing at a patients questions & concerns is a good way to get fired if you ask me!

Meanwhile, start keeping a list of what symptoms you have when, and how that relates to what's been happening in your life. For rashes, take close-up photos, if necessary for several days to show the rash progression. That way, even if it heals, you'll have something to show the drs.

Did the dr prescribe any regular treatment for the seborrheic dermatitis s/he diagnosed?

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


red_ironoxide
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/9/2010 2:37 PM (GMT -7)   
the dermatologist prescribed the same cream that my family doctor gave me. it seems like the cure-all for every skin condition. i haven't used it yet. i guess i'm in denial or something.

alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 4/9/2010 8:50 PM (GMT -7)   
hi red . . .

i have rash issues & have had fatigue issues for as long as i can remember . . . most doctors just blamed it on stress, etc . . . one dermy biopsied one of my rashes, diagnosed it as skin cancer (even though the results came back as "inconclusive") & froze it with liquid nitrogen . . . the rash never did heal (it was on my face & forearms), so i went to a different dermy who took one look at it & asked if i had ever been tested for lupus (which i had, always with ANA negative results) . . . SHE is the one who ordered a complete set of tests (all of my previous lupus tests had been ANA tests only - which always came back negative) . . . turns out that i am one of the ANA negative lupies out there . . . took the results of that lab back to my pcp who took one look at it & referred me to a rheumy (he was careful about which one he chose - there are rheumies out there who wont treat you if you dont look "sick") . . . the rheumy re-ran the blood tests that the dermy had run, put me on plaquenil to see if the rash responded & said "if the rash responds, its lupus . . . if it doesn't its not" . . . after 3 months on plaquenil, the rash was GONE . . . completely gone . . . and it was a rash i had for close to 5 years by the time i got to the dermy . . . i have had a couple small flares where the rash on my face started to come back, but the topical cortisone i got from my new dermy brings it back under control as long as i use it at the beginning of the flare & i dont wait for all heck to break loose before i do anything about it . . .

i agree with lynn, though . . . take a good look at your lifestyle & diet . . . if they are honestly not the culprit, discuss it with your PCP & ask for a basic blood panel first to rule out anything else & keep a log of your symptoms, photograph your rashes . . . that will help your doc alot in determining if other tests are necessary and deciding if you should see a rheumy . . .

hang in there!
Anne

There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
-Albert Einstein

Dx: SLE, Sjogren's, Reynaud's, Peripheral Neuropathy


red_ironoxide
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/11/2010 3:38 PM (GMT -7)   
thank you for sharing you experience with me anne.
 
makes me feel like i'm not so crazy. i'm pretty healthy... i don't want to have a disease or sound like a hypocondriac. i just want someone to believe me.
 
did you have any other symptoms anne?
 
i am planning an experiment for the next sunny day i have off work.
i will expose one arm to the sun for a certain amount of time while covering the other.
supposedly, seborrheic dermatitis responds well to sunlight while lupus does not.
i will take photos before and after.
maybe this will give me something more conclusive.
 
by the way, my dermatologist did give me the name of a rheumy...i guess he suspected that i didn't believe him!
 
thanks again.

alienwife
Regular Member


Date Joined Feb 2009
Total Posts : 108
   Posted 4/11/2010 4:03 PM (GMT -7)   
hi red . . .

i had alot of other symptoms . . . unending fatigue, joint pain, seizures, multiple organ involvement - none of which my previous doctors were ever able to figure out . . . and i have been told it was all in my head more times than i can count . . . i have been told i am depressed (dont know what that has to do with rashes, seizures or the organ involvement, though) . . . i have been told that i was light deprived and was prescribed phototherapy (which made things WAY worse) . . . the plaquenil has also helped with the overall fatigue although, when i push my self too hard (which is not uncommon for me), i still have issues . . . i stay out of the sun & avoid UV in general (my boss thinks i'm crazy for turning off the flourescents in my office, but i don't care), and wear and SPF 100+ sunscreen when i am outside because i am extremely photosensitive . . . 15 minutes in the sun without sunscreen equals weeks of welts . . . an hour in the sun (with or without sunscreen) equals days of sore swollen joints, fatigue and basically feeling like i got completely run over by a truck . . .

do you feel worse after you have spent time in the sun? alot of lupies have this issue . . . saddest thing is the sun feels so good at the time on aching joints and freezing cold extremities, but most of us still have to avoid the sun or we pay for it . . . as far as exposing one extremity to the sun and not the other, i'm not sure how effective that will be . . . my rashes arent contained to the sun exposed area only . . . i get them on my back, on my belly - places that NEVER see sun . . . you have to remember that your skin is an organ and if you have a systemic illness, your reactions may not be limited to one part of your skin . . . but definitely keep track of your rashes & photograph them . . .

good luck!
Anne

There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
-Albert Einstein

Dx: SLE, Sjogren's, Reynaud's, Peripheral Neuropathy


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/11/2010 5:41 PM (GMT -7)   
Trust your instincts and try to see a rheumatologist. They'll know the appropriate tests to order. People don't have rashes, fatigue and joint pain for nothing and you are not a hypochondriac for feeling ill. Sometimes it takes a while for these things to come to a full expression of the disease, so don't give up.
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 4/12/2010 4:59 AM (GMT -7)   
Hi Red_ironoxide. I'd be feeling "rusty" too with all those rashes. I think I have your answer to your elbow pain. It's repetitive motion injury. You're a cake decorator and move your arms in the same motion every day. Ibuprophen (advil, motrin) is an anti-inflamatory which, if taken regularly while you have the pain, should cure it. As for the rashes, I agree with everyone else. In your experiment you should consider exposing your face 30 minutes or so while taking a brisk walk. The butterfly (malar) rash on the face often shows when we are overheated. And yes, take good pictures! Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 


red_ironoxide
New Member


Date Joined Apr 2010
Total Posts : 4
   Posted 4/13/2010 5:52 PM (GMT -7)   
thank you everyone for your feedback. it is really nice to know that there are supportive poeple out there who know what i am going through.
 
best of luck and health,
 
your friend redblush
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