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Old 09-10-2009, 12:04 AM   #1
Join Date: Sep 2009
Location: Granite City, IL USA
Posts: 3
herrimanml HB User
Unhappy ~confused~

Hello everyone. I'm new to this message board. I thought I would try other avenues to try to get some answers. Who better to ask than those who are experiencing the same or similar things that I am.

I have had lupus for many years but officially dx about 7 years ago by a skin biopsy performed on my neck. I recently had another biopsy done on my back b/c the rash looked a bit different but the same results. The first diagnosis I thought it was just the lupus rash, not systemic but it is systemic.

I now see the dermy and the rheumy but still have lots of questions. I take plaquenil, Nabumetone (was taking Piroxicam) and Zantac. I have bad heartburn all the time and think I suffer from acid refluxe or something also.

I don't understand the tests and/or results as she reads them to me. Can I ask for copies of those so that I can take them home and try to process everything?

My rheumy did a battery of tests...1st round they took 27 vials of blood...Have had x-rays and so on but I still don't understand or have exact answers I can process.

Rheumy stated she doesn't feel a great deal of joint swelling, but I have terrible joint pain!!!!! My feet, hands, fingers, wrists & forearms hurt all the time - especially in the morning. My neck, shoulders and between my shoulder blades hurt EVERY day. I try not to complain b/c I don't want to seem like a big baby but after reading everything on this board this seems to come with the territory? I thought I was a hypo or something. I thought I had a fairly high tolerance for pain since I had both kids without any drugs whatsoever, but now I just feel like a big baby. I also get headaches (severe at times) with impaired vision.

I don't know what to do to get more concrete information and get a better handle on my illness. I try to stay out of the sun which is why I take Vitamin D and blah blah blah. No-one mentions the option of this an option? I got laid off in November and still not working but while looking for employment I'm wondering what employer is going to give me the time off for all the appointments? Currently I see the rheumy every (5) weeks. How am I supposed to find a job when I have to take about (3) hours every (5) weeks??? My rheumy appts take at least (3) hours.

Can I take anything other than Tylenol for my muscle aches, joint aches and the severe headaches?

Oh almost forgot...,sometimes I am extremely tired and seems I can't get enough rest no matter how much I get and then other times (like the past two days) I can't sleep no matter how tired I am. Is this normal? What should I/can I do?

Very frustrating and hard to process & get a handle on this....

Any suggestions, helpful hints or ideas would be greatly appreciated!

Thanks for providing a forum that allows us to vent!!!!!!!!!

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Old 09-10-2009, 03:53 AM   #2
Junior Member
Join Date: Apr 2009
Location: marblehead Ma. usa
Posts: 11
ronics HB User
Re: ~confused~

Dear Herrimanml,

So sorry you have to go through all this. I understand what you are going through. As far as the pain. I take darvoset when it is real bad. Right now you will be going to the doctors a lot. But once they get it under control it will probably be 1x per month. The fatigue is tough. I have yet to find something to ease it. But I have noticed that if I stay completely out of the sun it is definitely better. Also it is worse if I do a lot of physical things like house cleaning. Look up "Spoon Theory" It helps to have a visual of it. For friends and family as well. My understanding is that disability is a long road. (generally 2 years) Go to the Lupus Foundation of America web site. They have links and forums about it. There are two things you need to take care of...your health, which your docs will help with and...your state of mind through all this, which we will help you to get through all this. Only another lupus patient really understands. Even the best intentions of family and friends will never really know what it feels like. Good luck

Old 09-10-2009, 08:17 AM   #3
Join Date: Feb 2004
Posts: 5,487
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: ~confused~

herrimanml, welcome. Glad you found us here. I can recommend hardcovers written for patients that have a real wealth of info. You could borrow them from you local library, for a test drive. My fave is by Dr. Daniel Wallace. Another by Dr. Robert Lahita is also chock-full of info.

As far as Tylenol (etc.): I take Advil in addition to Plaquenil, BUT it's ALWAYS a good idea to ask your rheumie first, to make sure nothing else you have or that you currently take conflicts with it!

As far as headaches: I used to get a lot of killer headaches. Haven't had a big one in years. But this summer I could feel one "hinting" frequently. This summer I also had chronic pain, the worst I;ve had since being Dx'ed. Don't know whether it was weather adding onto my normal spring/summer blah's? (FYI, many lupus patients are walking barometers.)

I took Bellergal & Fional (at separate times, not together ) years back. They knocked out my headaches---but me, too, alas. I think you should speak to your rheumie again about your headaches.

YES, you may ask for bloodwork---good idea, esp. when you feel you're especially "off".

I had back & arm rashes, too: large targetlike circles that didn't scar or depigment. What are your rashes like? I was positive for anti-Ro; and like many in that "subset" of lupus patients, I have to avoid sun religiously; and must wear hats with large brims, long sleeves & long pants, lots of block on my exposed skin, etc. I hate it profoundly---but I do it.

Being tired but not able to sleep---me, too, in phases sometimes lasting months. I think pain may also wake me up, or shorten my sleep. I wish I had good answers, not just sit hear telling you "DITTO". If your meds aren't controlling things well, you should have your rheumie re-evaluatate them.

When you get your bloodwork copies, you could post more specifics. Someone here can probably help you organize your questions. (We're just patients, not drs., but we often can do a decent job suggesting pointed questions to ask.) I hope you keep posting here, as we're good company & have a really wide range of problems. No matter how weird a symptom seems, you'll be surprised to find that others often are familiar with it. Until later, sending you warm wishes, sincerely, Vee

Old 09-10-2009, 11:31 AM   #4
Join Date: Sep 2009
Location: Granite City, IL USA
Posts: 3
herrimanml HB User
Re: ~confused~

Thank you so much for your suggestions and advice!!! I remember my rheumie stating that most of my blood levels are in the "Normal" range meaning my kidneys are ok and such. I want to say my SLE(?) is what indicated the lupus in addition to the rash, but she said it wasn't extremely high but also stated that some patients can have significant pain with low SLE and some who have high SLE may have minimal pain. I feel if I already had employment (but got laid off in November) the employer would have to deal with my appts but trying to get hired having so many appts seems impossible.

I imagine I will be visiting this board frequently!!! It is nice to associate with others who are experiencing similar issues! You are right...,my family tries to understand but just doesn't fully understand.

I try to stay out of the sun, but I admit that I don't fully cover up - it's just too hot for that.

Question...,is it ok to drink any alcohol? My doctor asked if I drink large amounts but that was all. We usually have some drinks on Friday nights with family and friends, have been getting together every Friday for about a year or so. Does alcohol cause flare ups?

....Thanks so much for all your help and advice!!!!!

Old 09-10-2009, 06:32 PM   #5
Senior Member
Join Date: Jun 2009
Location: Brielle, NJ
Posts: 221
heidiclouser HB User
Re: ~confused~

Hi herri....welcome to the group. my doctor always sends me copies of my tests and labs. ask for them. then use the Wallace book to read about the tests.

i don't know any link between lupus and alcohol. i rarely drink because several of my meds are labeled no alcohol.

many lupies get disability. it can take awhile to get. some recommend starting out with a lawyer. binder & binder say they are the best. you can check out their website. the one time i contacted them they were very responsive.

i control my pain with aleve. i have tried many pain meds and aleve works best for me. i take 2 every 6 hours. i know i'm pushing my luck with my stomach but.....

i have sleep problems and take aleve. sometimes that doesn't even work. i'm an afternoon napper so that i can function.

my best advice is to learn as much as you can, question your doctor, get another opinion if you don't feel comfortable, and fire doctors when necessary.

hope to see you here often.

Old 09-10-2009, 06:34 PM   #6
Senior Member
Join Date: Jun 2009
Location: Brielle, NJ
Posts: 221
heidiclouser HB User
Re: ~confused~

ps....i take ambien to sleep not aleve....sorry for the mistake.

Old 09-10-2009, 09:13 PM   #7
Join Date: Sep 2009
Location: Granite City, IL USA
Posts: 3
herrimanml HB User
Re: ~confused~

Thanks for the info. Is Ambien a prescription or otc? Isn't Aleve in the ibuprofen family? I'm not supposed to take ibuprofen products. I'm assuming you aren't either which is why you mentioned you were pushing your luck with your stomach...I don't know what is best!

I think I like my rheumie but I have nothing to compare to. I have her direct number and can contact her easily, she just goes over everything so fast! I know all this is "Old hat" to her but it's all fairly new to me. She did tell me that she absolutely does not prescribe narcotics. I'm ok with that I guess, but I don't know...I don't know what I need when the pain in my neck, shoulders, hands, fingers & feet is so severe. As I stated...,I have had lupus for YEARS but thought it was just the skin lupus and was ignorant to it all so I did nothing (probably due to fear as well). I had just put my daughter in the hospital for Ulcerative Colitis (also a chronic auto immune disease) and while she was in the hospital is when I got the results of my biopsy. Needless to say I took care of her long before I worried about myself!!! I really thought all the pains and issues I have had over the years was due to age...

Today was a terrible day for me. I had alot of pain plus a ton of mental stress. Just found out our new insurance isn't covering the cost of where I got my labs done...I now owe the lab $1000. I was on the phone with the insurance company forever, then Walgreens made a mistake on my meds, plus I had to determine what lab I can go to tomorrow to have more blood drawn since I have been experiencing a flare up for the past week. Thanks to this message board I realized I needed to call my doctor. I would have just suffered through.

Thank you all so much for all the information you guys provide on this board!!!!!

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