Ok, I'm new to this...and this may get to be pretty long, so here goes...
I'm 21, female. I began having medical problems at 10 years old. It started with migrains and kidney infections with stones. Since then I always seem to be sick. I'm constantly tired, fatigued, have had insomnia since I can remember, joint and bone pain...lets fast forward.
June 2004, I was admitted to te hospitial for vomiting, fever and hat appeared to be hives. They gave me prednisone, benedryl, and a shot of epi. Immediatly my vitals began to drop, bp 60/40, decresed heart rate, lung infiltration. I was sent to te ICU where I stayed for 4 days and another three under regular observation. They thought it could have been anaphylaxis, but I went to an allergist and they tested me for everything under the sun, nothing. The rash that I went in with took days to go away and itched like sin. Antihistimines don't help.
We established that it wasn't an allergy, but it comes and goes. It covers my body and I itch everywhere! Red, slightly raised welps, usually kinds pale in the middle.
The last time it came about, I had extreme abdominal pain, to the point that I was incohearant. Here's a list of everything:
abdominal pain, joint & bone pain, headaches, irritible bowl, pain in stomach causing me to vomit (mainly at night), muscle pain & weakness, chronic fatigue, insomnia, lack of concentration, mood swings, chronic kidney infections & stones, cold hands & feet sometimes tingly, pluracy of lungs...I think that's it
Anywho, I can't find a doc that doesn't think that "it's all in my head". I'm not crazy, something is wrong here! I'm 21, I shouldn't feel this way. There are days I can't get out of bed.
ANA test neg. About to be tested for porphyria. Is there anyone out there like me? Does anyone have any advice? Please help me! Thanks for listening!
H, Shashy. Welcome! Are we related?! From childhood, I started having the same problems you listed, plus irritable bladder, sciatica, a widespread blistery rash when 8, anemia, chronic sinus infections & UTI's, and one very dangerous bout of pneumonia & encephalitis. I should have known, but didn't really understand, that my immune system was "crazed" because I swelled up horribly if stung by a bee, wasp, etc.
I never was told lupus was a possibility until I was in my mid-40's. By then, I had multiple problems all at once & started seeking better doctors. But it was a battle getting someone to recognize what I really had.
In my late 30's I started getting skin rashes after being in the sun. But for the first 4 years, I didn't realize the rashes were sun-related, because the early rashes were just "papules" (meaning bumps, about the size of a mosquito bite); also, they appeared several months after extended sun exposure (like summertime, trip to Florida, etc.), so I didn't see sun as the cause.
Four years later these bumps started expanding into red circles on my arms & back, then eventually faded without scarring or depigmenting. 3 months later, a new cycle would begin. I felt particularly bad when the rash was first starting up.
Many dermatologists and several rheumatologists later (plus GP's, gastroenterologists, and urologists), I took myself to a teaching hospital rheumatologist. My diagnosis: an intermediate form of lupus called SCLE = subacute cutaneous lupus erythematosus. I tested positive for anti-Ro antibodies, but the "threshhold" ANA test was always negative, which happens in this SCLE form of lupus more than it does in SLE = systemic lupus.
Why it took me so long to get answers: My local drs. were looking for "classic" systemic lupus = SLE. I don't think they'd ever even heard of this type. They SHOULD have known, but they were about 20 years out of date in their knowledge. In their defense: SCLE is less common than the other types of lupus, like SLE (systemic), or DLE (discoid), etc.
Other big reason: I think most of my local drs. were calling just for ANA. Then when that test came back negative, they quit. Well, joke was on me, huh? My city drs. told me that in this type lupus = SCLE, perhaps 1/3 of patients NEVER have a positive ANA. And mine NEVER turned positive.
Have you seen a rheumatologist? You could ask for copies of all lab results, to see WHAT tests were performed IN ADDITION TO ANA.
Please give a yell if anything here catches your eye, OK? Would love to hear more, when you have the time. I'm sure others will post soon, too. Bye for now, with my best wishes, Vee
Shashy, I forgot to include a bit about the different rashes often seen in the various forms of lupus.
SLE: most typically = "butterfly" on face
SCLE: One type is called annular: may start as papules, then in time become targetlike with clear centers. Other type is called papulosquamous: it looks like psoriasis (but isn't). Both these tend NOT to scar & will depigment only a little if at all.
DLE: will scar &/or depigment the skin
Thank you so much for your insight. I've tried to get soomeone to refer me to a rheumy, but no one will. My daughter's day care owner and her daughter both have lupus. We've known them for about 7 years now and she told my mom I should be tested. So that's where I got the idea of this could be what's wrong. I've done a little homework on it. I'm not photosensitive unless I have a rash. I don't get the classic butterfly rash, it's just everywhere when it decides to show it's ugly self. It's hard finding docs around here that will take my insuance.
No docs I've seen will listen to me. I know it must be overwhelming to have a patient come in and present with all of these symptoms, but they just give up instead of trying. The easiest thing for them to do is blow the person off and believe they're faking it all.
She told me blood clots in the urine were common...I'm not so sure. I wouldn't think it's common in something they look at as simple. They were large, and it freaked me out. I've had some pretty sever infections but nothing that resulted in that. It hurts all the time in the same way it hurts when I have a kidney infection or stone, but sometimes there's nothing there to support a reason for the pain.
I have trouble focusing my vision sometimes. Pain in my ears pretty often. Small, swollen, sore lymph nodes in my groin and under arm areas. The amount of hair that comes out when I shower and brush it is disgusting. I get sudden, sharp pain in my theighs like it's deep in the bone. After my stay in ICU, it took me more than two weeks to be able to walk or stand for any length of time. It took more than a month to feel close to normal, but I know what I feel is normal for me is not normal for everyone else. When I try to run m feet cramp up really bad, right in the middle. Sometimes I have trouble swallowing, they say it may be ann ulcer...I get this clenching pain in my stomach and it shoots straight up into the back of my throat, sometimes it makes me vomit. I see my GI doc Friday...I forsee another endoscopy.
It seems like it's something new all the time, something else to add to the list.
I dont know how to get a doctors attention. I don't know what to do or where to go. How do you convince a doc you're not crazy...and they need to do more? The last time I had a bad skin episode it came with abdominal pain. Pain so bad I told my mom that we needed to hurry up and find an answer because all I could think about was how much I wanted to die just to make it stop.
Thank you so much for listening and hving concern. It means so very much to me. Please feel free to ask anything and say whatever you feel. Thank you.
YOUR GP: Is he a "gatekeeper", meaning the only one who can refer you to a specialist? If worse comes to worst, is there another GP you can see?
PHOTOSENSITIVITY (an aside): You said you are photosensitive but only when you have a rash. In my book, that's one meaning of photosensitivity. A photosensitive person may show an external reaction (a rash), various internal reactions (all manner of things are possible), or BOTH. And it doesn't have to happen immediately after exposure to sun: it can be gradual.
YOU COULD WRITE A LIST: I made a one-page bulleted list with a brief summary of my early life, then with more detail for my more recent past. I used neutral language & tried to keep my behavior unemotional. (Note that I say "tried". ) I kept my write-up current in case I had to see a new dr. Also, I didn't exactly advertise that I searched the Internet for insights.
COULD YOU SEE A DERMATOLOGIST? Does your rash last long enough to get it biopsied? In a lupus rash, certain characteristic things are seen under the microscope, e.g., cell border changes, "immune junk" that shouldn't be there, too much or too little of certain cell components, etc.
Additionally, there are further skin tests called "immunoflourescent tests" that show very "characteristic" results IF the rash is some form of lupus rash. (By now, you're 100% aware that there are more lupus rashes than the well-known butterfly facial rash.) These tests can't say precisely what KIND of lupus rash it is (meaning can't distinguish among ACLE, the two kinds of SCLE, "discoid" meaning scarring, "lupus urticaria" meaning lupus-type hives, etc.) BUT, here's the pay-off: where these stain tests narrow thinking to SOME form of lupus, that's a huge leap forward.
MORE READING: Have you looked in your local library or bookstore for lupus books? One author is Dr. Daniel Wallace & another is Dr. Robert Lahita.
LAB RESULTS (blood, urine, skin, etc.): You should get copies for your personal files. Also, you'd be able to tell if your dr. tested for ANA & then stopped cold. For more reading on commonsense lab tests where lupus is a possibility: read the "sticky post" at the top of the Board, the one that discusses test results.
ENDOSCOPY: I was endoscopied up & down (ahem!) for swallowing problems & chronic irritable bowel syndrome. My lowest point was a hospitalization during which I could see on the monitor, after drinking the barium, that my throat was convulsing horribly & on down the line, too. Despite that, the staff gastroenterologist INSISTED on next doing a full colonoscopy, despite the much-increased risk of bowel perforation. And I was so desperate that I agreed to it, and without any tranquilizer or even something for my migraine. AWFUL (and STUPID on my part). And it took another 15 years (!) and many more episodes of old & new problems, before I found answers.
Hmmmmm... Maybe there are more thoughts there? Swallowing problems are possible in Sjogren's syndrome, which is associated with "anti-Ro" autoantibodies. FYI, these are the SAME antibodies commonly seen in the SCLE form of lupus.
HINTS YOU MIGHT DROP to your doctors, but VERY cautiously: You could say something along the lines of, "I chatted with a woman who'd had many of the same problems. She was tested for 'anti-Ro' lupus & Sjogren's Syndrome." But to do something like this, you have to "read" your dr. very carefully first. You wouldn't want to claim you are identical to this unnamed woman. In short, you don't want to appear to be making your own diagnosis.
ANOTHER STICKING POINT: Various of my local drs. assumed I had "only" fibromyalgia & thus needed meds for my moods, etc. I refused, as none could tell me how fibromyalgia alone could create my RASHES. My rashes just didn't fit that Dx.
Anyway, I hope you can get someone to at least consider a "single-bullet theory". Yes, drs. feel logically driven to chase down all the separate symptoms, but this can muddy the "big picture" where there is some core underlying cause. Bye for now. Thinking of you! Vee
I have a don't have a GP, I see an internist. She's one of the few that would take my insurance. Most that do take it around here aren't taking new medicaid pt's. So I'm kinda stuck, she's polite but snotty. And it's not easey even getting an appt with her, I think she just doesn't want to deal with me. But if that were the case, why not send me to someone else. I told her if she can't help to please send me o someone who can because I don't know where to go and I can't go without a referral. But she's yet to do that. She didn't get to see me when I had my last rash episode, but an allergist did, and it just blew him away and he literally thew his hands up and said he couldn't help. The last time I had also gone to the ER because of the abdominal pain, they discharged me while the rash was spreading. They wouldn't do anything for me.
When I get a full blown rash (somtimes I get very mild flares that show a little and go away quickly) there's no tellng how long it will last and someone has to be an "advocate" for me so to speak because I can't seem to function since I'm in such pain and discmfort sometimes even disoriented. All I can bare to do is lay in bed. I can't stand to go out in public because people will go the distance to get away from me if they get a decent look at me. Sometimes it can last for weeks. There's no pattern of it...but on thing when I was reading last night poppped in my head....I've never had a full blown rash in cold weather, only in warmer weather.
I haven't seen a dermatologist, when I had asked a gp about it once, they told me "well I don't know what good they'd do for you" and wouldn't give me a referral. Most docs I've seen don't like to you ask questions, muchless have an opposing view or know an ounce of what you're talking about.
Here lately, I've found my skin to be very itchy all the time...epsecially my scalp, but no rash or skin irritation.
Shashy, ER's (in my opinion) are maybe NOT the best place to get to the bottom of the variety of problems you describe. Yes, the ER can definitely help you get through an acute problem---even save your life. But determining an complex underlying cause? That's a much bigger stretch.
Why don't you start building that file? Get copies of all that you can, incl. from the allergist who saw your rash full-blown, the ER that treated your abdominal pain, etc.
Also, see if you can determine names of dermies & rheumies who might take on a Medicaid patient. Start a file, so you know who to try the next time something crops up.
This will sound awful---but I found help is very hard to get when you are between problems. I used to wait until I had a new crop of skin lesions starting up, then I'd try again to get answers.
I hope others here can offer more (and better!) thoughts on a game plan. Bye for now. All my best, Vee
I know the ER isn't the answer, the last time I was in there wasn't just because of my rash...doctor's had told me anytime I broke out in a rash like that I should use an EPI Pen....that is until they saw the rash first hand.....but the Pen ended up through my thumb and not in my theigh, :/ Go figure I'd do something like that.
But I will be building a file of all my labs and whatnots. I can see whatever specialist so long as they give me a referral.
I can understand what you mean about waiting til a rash comes up....but I seem to get the same amount (or lack there of) when I have a rash as when I don't. So rash or not, I'm not giving up on trying to get in with someone before it happens again. Because there's no telling how long it will last when it does come up. Plus I'm almost willing to bet that I won't get another serious one til summer. So I'm guessing I probably am photosensitive, I just didn't realize it. So I'm so very glad that I got on here and have been talking with you and others, realizing more than I thought I would. Thanks again!
I, like Vee have all of your symptoms. I was diagnosed with SLE after several skin biopsies of rashes - and getting the runaround by doctors galore, including a rheumy who specialized in RA and had no clue about lupus (I did not know then that some rheumies really don't know lupus and its cousins). I have two suggestions - the first is to demand a "lupus panel" blood test and request it be performed by RDL - Rheumatology Diagnositics Laboratory or something like that. Keep the results and compare them to the bloodwork explanations on the lupus foundation of america's website very carefully. Along with your regular CBC/Chem7 typical bloodwork.
Second suggestion is more radical - and remember I am NOT a doctor and any doctor would kill me for suggesting this. Go lay in the sun on a nice day for a few hours - get a rash - have it biopsied TWICE by a DERMATOLOGIST - have one biopsy tested for the lupus immunoflourescence test and the second biopsy - have them take a big, deep chunk of rashed skin and look at it under the microscope directly.
I suggest this because my definitive SLE diagnosis came only after the flourescent test was negative and fortunately I knew a good expert dermatologist - Stanley Bierman in Los Angeles - who would not stop looking at chunks of my skin until he found an answer. My lupus was apparently only when he took a skin sample that was so deep it went to my blood vessel walls. Thank God he did that or I'd still be in the circle of hell of being blown off and passed around by numerous doctors.
Good luck and please take my suggestion with a grain of salt. It is something I would do to force a diagnosis, but probably pretty bad advice from a medical standpoint.
Best regards. Hope nobody flames me for suggesting it! And hang in there. It really takes a awful long time and persistence to get a diagnosis, find some reasonable treatment, and then try to figure out how to live a changed life. Best to you.
Hi, Jennifer. I just read your suggestion about trying to instigate a lupus rash. Hey, my local GP (!) tried to provoke new rashes, by telling me I needed sun. Then he'd ship me to local specialists, who kept STRIKING OUT.
Downside to approach: full-blown anemia, more migraines, many ruined vacations (came close to dying in France, or at least felt pretty close!), one fender-bender (enroute to a dermie during one of the many ruined vacations), ever-worsening bouts of kidney stones, major damage to my marriage, and finally got one disfiguring scar (smack on the bridge of my nose, naturally ).
Upside to approach: I realized I needed a teaching hospital rheumie. So I chose one, and in less than 1 minute, I was well on my way to real help.
So I think the problem inherent to this approach is that you can worsen, or flat-out harm yourself, yet still not get answers if your drs. aren't capable enough. Are you doing OK now? Hope so! Best wishes, Vee
There is one thing that jumps out at me from amongst your symptoms and that is a possible thyroid problem. That would not be the answer to all your symptoms but cold hands and feet, hair falling out, chronic fatigue and joint pain are all things I experienced prior to getting a hypothyroid diagnosis. In particular if you have gained weight and can't lose it, thyroid might be something you want to ask your doctor to check (simple blood test).
HI Jennifer! Thanks for posting! I must say, I have already thought of ways to self-induce a rash. Sunlamps or something. I thought of that after I realized that I've only had severe rashes in warm sunny weather....and I thought of it too because I can't seem to find anyone who can help me. I've thought that maybe it would get someone's attention. I just don't know where to go and medicaid limits my options. I don't know where to go and who to go to....
I had an endoscopy yesterday and they saw no ulcers, but took some biopsies. Don't know the results of that yet. My doc thinks I'm crazy...I'm about to loose my job for being sick so often, I have a 6 year old daughter. I don't know what to do. I need hope.
I've had a thyroid profile, it was normal....like that really means much ( this I know now) but I'm itty bitty, I last weighed in at 104. The only weight problem I have is gaining it! But I have gone up and down a little...I was 98 then 120 then slowly went back down to where I am now. I have no clue. But thanks for the comments!! I appreciate each and every one of them!
Hi, Shashy. During my decades of irritable bowel, my then-doctors had me on a "bland diet" that was a poor choice for someone with irritable bowel: way too fatty. I do better GI-wise with a low-fat diet & very little red meat. (But I only started doing *much* better when I started Plaquenil, which stabilized many of my problems quickly.)
Anyway... have you started organizing your labs, etc?
Also, have you tried reconstructing your episodes? With info like when each started, symptoms, meds (if any), duration, etc.? I used to scrawl notes on my calendar, then at the turn of the year, put the old calendar into a drawer. When I had to, I was able to piece together at least 8 years. Most important, I became convinced that sun was a factor: time & again, I could see that we'd been in Florida, or taken a summer holiday, then within a few months, BOOM.
When I showed my chart to my GP, he was annoyed that I'd created something so anal-retentive, and I had to shout to make him look at it. I only wish I'd been so logical much earlier.
I do realize why it was hard for me to get answers: ANA-negative lupus is not that common. (I was positive for anti-Ro, but not for ANA.) My rashes were perhaps the first problem I'd ever had that made my drs. suspect lupus; but, as luck would have it, my rashes were the LAST of my problems to appear. But YOU have rashes now, so I'm really hopeful for you, that you can keep pressing until you get help. Bye for now, Vee
Hi i am a 45yr old female blk, i have had systemic and discoid lupus since 1990 this is a very frustrating disease, i have had a lot of health problems since i was diagnosed, but i now have to make an appoinment to see a obgyn because i have lesions that wont heal in the private area talk about painful, and it is not much they can do but give me different creams. I am married so i know that it has something to do with this godawful disease.