Lupus?

In My Humble Opinion
1

Do any Dopers here suffer from lupus?

I’ve suspected for a couple of years that I have SLE. My symptoms include: random, high fevers; hair loss, Reynaud’s phenomenon (very painful and frequent, lasting one to three hours at a time and almost daily), malar rash (faint, though, like sunburn), extreme fatigue (I often cannot brush my own hair without help, and I can’t stand up long enough to take a shower: I have to sit), depression, extreme joint pain (fingers, knees, elbows, hips; the knee pain often wakes me up at night shrieking), arthritis (I’m only 30, but my fingers are deformed from arthritis), abdominal pain, muscle pain, bloody diarrhea, and weight loss. (Some of this is TMI, I know.) If I eat, I instantly fall asleep, so I try not to eat until bedtime.

I also bleed easily and any little thing becomes infected. For example, I have a small first degree burn on my wrist from my oven; it didn’t blister- it was just slightly red. It got infected and now it’s still bleeding occasionally (four weeks later) and scarring. I also have an angioma on my face, which I recently spent far too much money to have “removed”; this has also become very infected. (TMI:) It alternately bleeds uncontrollably and leaks pseudomonas-looking-pus. I also have blind spots in my right eye, but when I had an eye exam, my retina was okay. (FWIW, I’ve always had perfect vision until now.)

I mentioned these symptoms to my doctor and begged him to help me because my fatigue is so extreme that I cannot work. He dismissed my claims and told me to “get some exercise”.

I would love to exercise: I’ve always been a healthy, active person. I’m the kind of person who, until the last few years, loved to walk/jog/ride my bike for 10 miles every day. But when you can’t even bathe yourself, how are you supposed to exercise? He is a complete jerk. Now, I have no health insurance, so even if I did get a diagnosis of lupus, I’d be out of luck.

FWIW, I’m an RN. My doctor did run thyroid tests, which showed my thyroid is normal.

Do any Dopers have personal or professional experience with lupus? Does anyone have any suggestions? I’m dying, here.

2

Holly, I don’t know a thing about Lupus, unfortunately. I work with someone who has it and I’ll ask her, but I think she just went on maternity leave and will be gone for several months. :frowning:

I can report that she is pregnant with her second child, and though there’s apparently some risk if you have this and get pregnant, her first child has no complications and I don’t believe she’s had any with her soon to be second. So if you have any desire for children, I hope you can take heart from this.

I’m sorry I don’t have any more info, but hopefully someone else less ignorant will stop on by. I do wish you nothing but the best of luck and the best of health, in any event.

Apologies if I’ve said anything naive.

3

Holly, very sorry to hear that you’re feeling so poorly. Lupus probably could account for your symptoms (I’m a med student, not a doc yet, so take this with a grain of salt). As with all Doper medical inquiries, however, the best advice I could give you is to seek competent, compassionate medical care. Having no insurance may not be an insurmountable impediment, either. Many teaching hospitals at academic centers see patients free of charge or at least help them apply for medicaid. Please, see a docor ASAP.

FWIW, to meet the criteria for the diagnosis of lupus, one must have four of the following:

1)Malar rash
2)Discoid rash
3)Photosensitivity
4)Oral/nasopharangeal ulcers
5)Arthritis (non-erosive, involving 2 or more joints)
6)Pleuritis or pericarditis
7)Renal disorder (proteinuria or cellular casts)
8)Seizures or psychosis without other cause
9)Hemolytic anemia, leukopenia, lymphopenia, or thrombocytopenia
10)Positive LE cell prep, positive anti-DNA or Sm antibodies, false positive VDRL
11)Anti-nuclear antibodies

From your post (and again, please do not rely on this—see a doctor) you seem to have #1 and #5. Low blood cell counts (#9) could explain fatigue, easy bleeding, and immunosupression. To be evaluated, see a doctor. Try to see a rheumatologist if at all possible, as they specialize in treating autoimmune diseases.

BTW, the constellation of symptoms you relate can be due to other causes. Whatever the cause of your symptoms, their severity and duration is very concerning. Please, please, please see a doctor.

If you are having trouble finding someone, email me (email address in in my profile), and I’ll try to help.

4

Lupus Chick to the rescue… :wink:

I have SLE. I’ve had it since I was 16. (I’m 25 now.) I’d second choosybeggar’s comment to see a rheumatologist…I spent an entire summer going to doctor after doctor until I found her. And another thing…if you DON’T test positive for lupus, ask for the medication anyway. The ANA test is the only one for lupus. However, it’s known to be wildly inaccurate.

Keep fighting. It took me over 6 months to finally be treated. It took another 4 years for me to be back to normal. My email is in my profile if you want to talk…I understand exactly what you’re going through, hon. BIG hugs

(Also, choosy? Extreme fatigue is its own entry on that list of symptoms. At least, that’s what I always read…)

5

DRY- fortunately, I’ve already had all the kids I need. :slight_smile:

choosybeggar- I do also have oral ulcers and photosensitivity; forgot to mention those. Oh, and migraines, too. I don’t expect to get diagnosis or treatment via the internet; I’m just ventilating a bit here.

Yes, I should see a rheumatologist. I’m kind of bummed with the medical profession right now, specifically my own doctor, who has been absolutely no help at all. Competent and compassionate, he is not. In order to see a rheumatologist, I’ll have to get a referral from my doctor, and that won’t happen.

I wouldn’t qualify for Medicaid, but there’s no way I could afford health insurance or a doctor’s bill right now. I do live next to a teaching hospital (I used to work there, in fact) but they don’t give any financial breaks to people who aren’t on Medicaid or indigent.

I think I’ll just have to deal with it on my own a while longer.

Falcon- Thanks for your reply; expect an e-mail from me soon. But first, I need to go lie down for a while. :slight_smile:

6

I wrote this last night (australian time) but the boards closed down for administration services just as I had pressed submit. Dash it!

Reading the posts this morning (local time) I think that some of this is already covered. But I would just add that working in community health I am aware of how powerful it can be when a few people with the same health condition get together and compare notes. Call it a self help group or a support group, it does NOT have to be a perpetual bitch session, but has the ability to end isolation and increase a sense of control and mastery. And a little bitching doesn’t hurt, either.

So this is what I wrote last night:

Holly - what a bad time you’ve been having! From your writing it’s clear you have a very good, positive, un-whiny attitude to life too, so it seems doubly unfair that all, this has been happening to you.

This site might not be near the top in a Google search, that’s why I mention it. It’s a local (australian) Lupus Support Group. Some pages look like they might be useful to you.

I don’t work directly with people affected by Lupus, but I have friends who do or have. Feel free to email me if you want.

And yes, do see a doctor. A doctor who’ll enter a partnership with you.

best wishes
Redboss

7

Holly, you MUST get treatment. I have SLE also (Falcon, you’re living my life!). I had similar symptoms and was diagnosed at 16. I’m 28 now and have been in remission for 8 years.

If you do have lupus, you could be doing a lot of damage to your body (especially your kidneys) by leaving it untreated. Do what it takes to find a doctor who will listen to you and send you to a rheumatologist. Or, just go to a rheumatologist…forget the referral and get a loan or something. Your health is not worth risking over being in debt for awhile. Use your community resources. Find help, and if you don’t have the energy to find help, get someone in your family to do it for you.

I can completely sympathize with you about doctors not being much help. Recently, I started having joint pain in my hands. I went to a doctor, asked her to check it out, and told her that I have lupus. She looked at me like I was an idiot and asked, “Have you been diagnosed with a blood test or did someone just tell you that?” She looked at my hands for a minute and told me there was nothing wrong. Then she said, “So, do you want a prescription?”, like I was some junkie trying to scam prescription meds.

As a hijack, Falcon, I know you’ve mentioned that you also have hypothyroidism. I was diagnosed with that about 4 years ago…did your doctors connect it with the lupus? Mine didn’t, but I wonder sometimes.

8

I don’t know…my mom has hypothyroidism too, so we never connected it at all. We found it by accident on my 6 month tour of doctors that included a trip to Johns Hopkins. WHEE!

And that doctor was a moron…I was originally diagnosed because my doctor just KNEW I had lupus, but I couldn’t get a positive blood test. So she put me on Plaquenil anyway, to see if it helped. It did, and I got a positive blood test like 6 months later. Whee.

(and C3…we ARE living parallel lives…I’ve been in remission for almost 4-5 years, meself.) :slight_smile:

9

C3:

Still, I don’t want to impoverish my family over it. If it was just me, it’d be different. Also, it would be a bad idea to get diagnosed with lupus (or any other chronic disease) at this time, while I don’t have health insurance. My kids are insured, but it’ll be at least a year before my husband and I can afford health insurance for ourselves. If I have a diagnosis like lupus on my record, I’ll never be able to afford insurance.

Then again, I do have life insurance. Death by renal failure isn’t the most comfortable way out, but it would sure beat living like this any longer. I could console myself by remembering the large chunk of cash my family would receive. :slight_smile:

Arrggh! Did you bitch-slap that woman? I’d have been tempted to do so.

Redboss- thanks for the link! I hadn’t seen that site.

10

Holly
I would also like to say you must get treatment. I dont know much about Lupus but from seeing one of my friends have and die from it within a year because test came up neg. a plethora of times and finally when they did say she had it…it was a little to late. Sadly she was only 18 but apparently shehad it when she was at a younger age it and it just went unnoticed or they chose to not recognize it (I dont know). Anyway you say you dont want to impoverish your family over it, but in the long run pending how bad it is and if you do have it then your family might lose you someday because you chose to ingore if for a little longer. But then again it might not turn out that bad … like I said I dont know much about Lupus but to watch my friend go through all that she in just a matter of 1 year … I myself if in fear of having it would seek treatment as soon as I can but thats just me.

11

kremit:

That’s just the thing, though. If I die, my family will have plenty of insurance money. If I live, they will not. In the last year I’ve become unable to work outside the home; my husband is having to take up more and more of my slack. I had to give up the career I love. I’m afraid I’m not much of a mother to my kids anymore, either. I’d love to take them to the park, play a board game with them, or help them with their homework, but it’s impossible.

Money isn’t a perfect substitute for a mother, but when that mother is unable to do any mothering at all, it’s not as great a loss. I don’t want to bankrupt my family.

I’m sorry you lost your friend that way. If it’s any comfort, at least she’s not suffering anymore.

12

Come on, Holly. You are saying this because you are sick. You have an illness. Illnesses lead to depression in addition to their physical manifestations. Your illness may be lupus, it may be something else. In any case, chances are very good that your illness is treatable.

You want to be a mother to your kids, get treatment. Hopelessness is a natural reaction given your circumstance, but please do not succumb.

13

Oh, Holly. Ask your kids whether they’d rather have you or the money. Of course you’re worth it.

Redboss

14

Sorry about the lame post, guys. I just feel like crap, I don’t know what to do, and it gets to me sometimes. I think I will go back to my doc and demand that he take me seriously. (I’m quite sure he dismisses me because I’m female.) Rheumatologists here won’t accept anyone without a referral, so I’m sort of at buttmunch’s mercy.

Last fall he seemed more willing to let me die than treat me. I had Clostridium difficle (the infamous C.diff), with which I can readily recognize since I had worked in ICU. I went to see him and told him that for two weeks, I’d had nausea and (TMI to follow) I was losing vast quantities of fluids from the opposite orifice. I said I thought it must be C.diff. I had lost ten pounds in those two weeks, though I drank (literally) gallons of water. I was incontinent of it.

So, he prescribed me Phenergan, which is a fabulous drug for nausea. Again, I tried to explain that my fluid loss was not from vomiting- I was only throwing up about once or twice per day. He told me to take the prescription. He asked if I could be pregnant. He knows that I have 3 kids and have been spayed, and I should be able to tell the difference between morning sickness and being incontinent of vast quantities of green water from the posterior orifice. He just winked at me.

So, a couple days later I called back and said I was still losing far more fluid than I was taking in and it was not the vomiting that was doing it. His nurse called in a prescription for Zofran, which is also a fabulous drug to treat nausea. Again, I stressed that nausea wasn’t the problem.

Finally, a few days after that, my husband carried me to the ER, where they determined I was near death and promptly admitted and treated me.

This is the kind of doc I’m working with, here.

Thanks for listening to my rant. How did I get C.diff, anyway, medical folks? Healthy people do not get it. Even sick people are unlikely to get it. I’ve only seen it in long-term ICU patients who have been on scads and scads of antibiotics, specifically Vancomycin. Two months prior to having C.diff, I took a 5-day course of Zithromax for bronchitis, but I really can’t see how that could have caused it.

15

Holly,

Unfortunately, my co-worker with lupus did, in fact, go on maternity leave before I had a chance to ask her about this. :frowning:
The good news is, she seems happy and healthy.

I’m glad other dopers were able to give you quite a bit of input.

Hang in there, and let us know how things go!

16

I’ll be the first to admit that I may be missing the forest for the trees here, and if the answer if something simple that I missed I apologize in advance for seeming offensive.

Why don’t you see another doctor and get a referral from there? You seem like you’d be willing to see a specialist but your doctor is holding you back. Couldn’t you go to another doctor or hospital and try again for treatment?

17

Jophiel:

You’re absolutely right; I probably would be better off just switching docs and getting a referral from there. I’ll probably end up doing this, in fact. It’ll take at least a couple of months because I don’t know of any (halfway decent) doctor in this town that doesn’t have a waiting list for new patients, plus it’ll take a while to save up the money because first appointments cost quite a bit more than I have to spend. Then of course, I’ll have to wait a month or two before the specialist can fit me in, which is good because it’ll take me that long to save up enough money for the specialist’s fees.

Also, like I said before, I feel like I can’t do anything at all until I have health insurance because I’d never be able to afford insurance if I had documented health problems.

18

Holly, check out http://www.lupus.about.com. I visit the thyroid site that about has, and it’s been a great help to me. It had articles, a forum, and live chatrooms. I have hypothyroidism, and I “may” be developing rheumatoid arthritis or fibromyalgia, so I can understand some of what you’re going through. It’s VERY frustrating to be told to “exercise more” when just doing day-to-day activities like laundry or cleaning can totally exhaust you. Or when your feet and joints hurt so badly that standing and walking are extremely painful. My advice to you is to get on a message board for lupus- you will get a lot of support and understanding. And please change doctors! You deserve to have a doctor who is going to take your symptoms seriously and treat you as a human being and not a lab value.

19

Oh Holly, if you do have lupus, my heart goes out to you. I saw my best friend a few years ago change completely, not because of the disease, but the treatment. She was on Prednisone and it turned her from a normal, if deeply Christian teenager. After taking Prednisone for a while she became a total fundie, which ruined our relationship because she was always trying to convert me. I haven’t talked to her for years.

But, if you do have lupus (hope not, hope not, hope not), there are a lot of treatments for it. Please stay away from Prednisone if possible. Ok? Best wishes, and get your self a better doctor!

20

Holly, deepest commiseration.

I have Fibromyalgia Syndrome and Irritable Bowel Syndrome, and so I can sympathise with a large portion of what you’re talking about. It takes a lot of persistence to find a doctor who will be understanding - I’ve been sick for over 5 years now, and have only just found a doctor that I like. An earlier one told me to exercise and get a job - this when I was so sick, I was unable to even feed myself properly!

I’ve joined a Fibromyalgia newsgroup, and have found it’s great to talk to others. Perhaps you can find a lupus newsgroup? Try alt.support.lupus or alt.support.diseases.autoimmune.lupus for a start. They may be able to put you onto a doctor in your area who is known to be good with this problem. At least this will save you doctor-hopping.

Best wishes to you. Never give up. Your family would rather have you than anything, and your life does have value even if the bad days get to you. Just remember - this, too, will pass. I have a whole stack of cliches sitting here waiting - any more of this silly talk about dying, and I’ll unleash some more on you :slight_smile:

Sincere heartfelt hopes for your future.

Carol.