Keep Track of Your Health with these Great Free Apps

Got a device that uses apps? Got health goals?

Since I was diagnosed with lupus in 1993, I always knew it was important to keep track of my symptoms. When I see a doctor once a month, I'm only going to remember the symptoms I've had for the last few days. Lousy data=inappropriate treatment. Finally, we are living in the future, and the apps have arrived. Easy for patients to use, and easy to doctors to get a lot of info at a glance.

Against the grain of conventional wisdom, I put my favorite app first. But at least I was smart enough to save the female-only one for 3rd. (Scroll past that one, fellas. The rest are gender-neutral).

Symple, a free app to track your symptoms:

I use this, and I like it. Enter your symptoms (you create the list), and each day, mark the level of each symptom (from "none" to "severe"). If you turn your device sideways, you get bar graphs, showing the ups and downs of each symptom over a month or so. You can also overlay "factors" on top of the symptom graph and see any correlations (factors could be things such as stress, eating a taboo food, having some fun, sleep deprivation, exercise, etc.- you choose the factors as well) .   

At first, I was upset that  the symptom list was limited to 20. Those of us with multiple diagnoses are usually tracking more than 20 things. Not necessarily all at once, but we need more than 20 total symptom slots. But then I learned from @sympleapp that you can "pause" dormant symptoms, allowing you to add more, and not have to enter anything on a daily basis for the ones that are dormant. Well done, Symple!   

I think it would be nice to have a "print" feature, so you can just hand it to your doctor. They do have a "summary" that you can email to your doctor... but, it's just a summary, and not every doctor gives out their e mail address. The summary doesn't show the patterns and correlations with factors (so maybe you bring your iphone or ipad to your appointment?). That's my only "negative," the scanty report. On the other hand, many doctors are "quick glance" types when you hand them your own reports.   

The major "positive": Symple makes the actual recording of the symptoms very easy. A daily alarm goes off to remind you to enter your symptoms (you pick the time). Tap tap tap done. Very nice. Anything that easy, you're much more likely to keep up with consistently. So far, it's for iOS (iphone/ ipad) only, and it's free. I highly recommend this app for people who have a chronic illness (and an i-thingy).

Lupus tracker Pro (not free)

Got an Android instead of an i-thingy? A symptom-tracking app for droid users: LupusTracker Pro organizes your symptoms in a grid-like format. Very similar purpose to Symple, but looks quite different, and is for Android only. I haven't tried it, because I only have an ithingy. $2.99

 

iPeriod (ladies!), free app to track your cycle:

I use this and find it easy and helpful. Great to know when "Aunt Flow" is supposed to arrive, so you don't ruin yet another pair of undies (!), and you know why you're so crabby (PMS!). :) Also good to know if you're late, or missing, or having an unusually long period. If you've kept track using this app (or a paper chart most gynecologists can provide you), you can tell your doctor exactly when things became abnormal.

Blood Pressure Companion (free app for tracking your blood pressure)

I also use this app. Of course, you also need to own a separate blood pressure cuff. The app does not actually *take* your blood pressure. You enter your BP numbers, pulse and weight into the app.

Tip on buying a blood pressure cuff: You should be able to find a battery-operated wrist cuff in the drugstore (or online) for around $40-50. I was being cheap, so I tried using a manual cuff on myself. That was so pathetic, it was comical. I never got the cuff tight enough to get a reading, but if I had, I'm sure my blood pressure would have been quite high from the effort. Just get a motorized one if you have blood pressure issues. It's worth the extra $10. And don't use the sit-down machines at Wal-Mart. They never calibrate them.

I used this app to help me track my BP while I was trying to get off the BP medication. I had to go back on it. Then a year later, I tried again and succeeded (must be the tap dancing!). I brought the iphone into my doctor appointment to show him the numbers.

Depression/ Anxiety measurement App

http://whatsmym3.com/

Measure and/ or monitor levels of anxiety, depression, PTSD, or bipolar symptoms with a 3-minute quiz. The app keeps track of your previous scores, and tells you what range you are in. 

Lose It! (free app for tracking your weight)

I've been using this one for a couple years. I only weigh myself once every 1-2 weeks. I don't like to obsess over my weight. But I do want to keep an eye on it. Generally I can just tell by how my pants fit whether I'm gaining or losing weight. However, any unusual weight gain or loss could mean something weird is going on with my kidneys. Of course, I also want to keep it from creeping up to an unacceptable number, for both health and vanity reasons.

This app has a diet plan that is based on calorie counting, another thing I'm not into anymore (used to obsess over it, but now I just eat "real food" instead of junk, and make sure I get my vegetables). All I use on this app is the data entry of my weight and the graph that shows my weight gain and loss over time (under "goals").

 

Garmin Fit

www.garmin.com/apps

Tells you how long you’ve been going, how far you’ve gone, what your speed is, and how many calories you’ve burned. The app saves all your sessions, so you can see your progress as you increase distance or speed over time. Also, when you activate the option, friends and family members can track you while you walk/ run/ bike. This function is great for safety if you’re out alone. I'm planning to get this, because I love to go for walks and bike rides by myself and let my mind wander. I would like my hubby to know where I am when I'm out exploring alone.

 

Lumosity

www.lumosity.com

Lumosity uses games and quizzes to sharpen your brain and cognitive skills through daily exercises. I haven't used this yet, but I keep hearing how great it is.

 

Pillboxie 

Helps you keep track of your medications. Enter each pill, what it looks like (color/ shape). In the notes you can add things like doseage, etc. You can set alarms to remind yourself to take each pill. I use it just to have a current list of meds (and supplements) for my doctor appointments. I keep all my pills in one of those big pill boxes with 4 compartments for each day. For example:

 

Then I simply take pills with breakfast, dinner and right before bed. But some people would find an app with alarms more useful.    

Did I miss any? Are you using some health app that you love that's not on this list?    

How about you non- app users? How do you keep track of things?    

Me, I did it on paper in a notebook. Then in a Word document (which is now 20 pages, and so far no doctor has been interested in reading it). Finally I created a "health and symptom tracker" chart that I could print out weekly and bring to my appointments. It's impossible to remember all the symptoms you've had since last appointment, and having some kind of system does it for you. 

 

If you'd like to have a free copy of my Health and Symptom Tracker, just sign up in the "subscribe" box (top right corner of this blog) and I'll send one right to ya (or go here to learn more and sign up: http://www.thesingingpatient.com/free_offer ).

For people with serious conditions, and even healthier people trying to improve their well-being, it's all about keeping track of things, and apps- or any kind of simple system- are all about making that part easy.

 

To your health-

Carla

 

Carla Ulbrich
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

 

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

http://www.thesingingpatient.com
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Does Diagnosis Even Matter If the Treatment Is the Same?

Hello,
I was test for auto immune and told "probably lupus." I had a skin biopsy which stated "could be lupus." My rheumy does not think it matterswhat the diagnosis is because the treatment is same whether it's lupus or MCTD.

I have or had over the past 30 year all or almost all of the criteria on the lupus list. My problem is that they have not happened altogether at once.

Also, about the kidney: a few times my urine was coke color, but it was never collected at the time. Never know when it will happen.

Is my doctor right that it does not matter what the label of the disease, or should I be told?
Thank you.

Hi-

Thanks for writing in.

I believe it's important to keep a symptom diary so doctors can have the most data to work with.
That is my first suggestion. Start keeping track of your daily symptoms. Also go back and reconstruct as much as you can, when you think this started, what your first symptoms were, and all symptoms with dates as well as you can remember.

It took me 2 years to get diagnosed with lupus, because I kept going in with different symptoms each time, and was so exhausted I couldn't remember all the other symptoms I'd had recently. No one suggested I keep a symptom log. I think it's important to have as much data as possible when you've got autoimmune stuff going on.


If you have odd-colored urine, maybe go into an urgent care center (they are fast and do walk-in appointments and sometimes have a lab on site). Ask for a urine test, telling them your concern about the odd-colored urine. It could be blood.

I think having a specific, definite diagnosis is helpful because
1) it makes it so much easier to go find books and support groups and read up on all your options.

2) Yes the treatment is basically the same for most autoimmune diseases. In mainstream medicine: immune suppressants. In alternative medicine: build up your health through nutrition, rest, and sometimes alternative therapies like acupuncture or reiki, etc. But there are some things that are specifically bad for certain diseases, so I think specific diagnosis is important.

You might like this article by Dr. Mark Hyman on autoimmune diseases: "how to stop attacking yourself" http://drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/

Your doctor has to put some kind of diagnosis code on his forms, so he could at least let you in on what he's writing on the forms. I would ask "What diagnosis are you writing down? Why did you choose that one?"

The odd colored urine is important to report.
Lupus can definitely go after your kidneys. You should be able to find out your kidney function without a biopsy. Pee in a cup, collect in a jug for 24 hours, get blood tests. I've had 2 kidney biopsies- they were a royal pain, they are not entirely safe (you have major blood vessels in your kidneys and could end up bleeding internally or getting infected) and we learned nothing from the ordeal. So I say, collect pee and blood to see if your kidneys are OK.

I know from the people who write to me that doctors for some reason are more hesitant to give out a lupus diagnosis. In fact I wrote a blog post about this- it's my most popular blog post, if that gives you any idea what a problem it is to get diagnosed with lupus these days. http://lupusandhumor.blogspot.com/2011/09/sjogrens-vs-lupus-smackdown.html

I would just ask him to tell me what he's writing on your lab forms as the diagnosis code. You have a right to know.

Hope this is helpful. Wishing you all the best


Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
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Lupus Symptoms

Just under the wire here, another post before the end of Lupus Awareness Month.

 

Here's a list of the 11 common lupus SLE symptoms, developed by the American College of Rheumatology (ACR). Doctors for a long time have agreed that if you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

1. Malar rash – appears over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes or worsens a skin rash
4. Oral ulcers – sores in the mouth
5. Arthritis – joint pain and swelling of two or more joints
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart  (pericarditis). This causes chest pain which worsens with deep breathing.
7. Kidney disorder – persistent protein or cellular casts in the urine (you would see bubbles in your urine)
8. Neurological disorder – seizures or psychosis
9. Blood disorder (found by lab tests)– anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder (found by lab tests)– abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA) (a lab test)
    
     I have experienced #1, 3, 5, 6, 7, 8, 9, 10, 11 out of this list. But remember you only need to experience 4 for it to build a strong case for lupus.
    
    

Other symptoms that do not appear among the ACR criteria but are recognized as lupus symptoms:

1. fever (over 100° F)
2. extreme fatigue
3. hair loss
4. fingers turning white and/or blue when cold (Raynaud’s phenomenon)
   
   I have experienced all 4 of these.

More symptoms that I experienced that are not on either of these lists but I believe were related to/ caused by the lupus:

1. brain fog (confusion)
2. unexplained weight loss
3. congestive heart failure
4. high blood pressure
5. digestive problems (stomach just shuts down)
6. weakness, especially upper body
7. irregularities in menstrual cycle
8. neuropathy (nerve pain)
9. anxiety
10. depression
11. secondary Sjogrens (lab test/ dry eyes and mouth) (It's not all that unusual to have more than one autoimmune disorder)
12. fibromyalgia

Obviously, this is my list so I've experienced all 8 of these as well. 

Part of the reason I experienced so many symptoms was that my illness went undiagnosed for a couple years, then I was not treated for months. It's really important to get diagnosed as early as possible. Then once I got to see a doctor, I resisted the idea of going on prednisone for 6-7 months. Finally I got sick enough I realized I had no other option. It isn't necessary to go through all I went through. It wasn't even necessary for me to go through all that.

Now that I've overwhelmed you with all the possible things that could go wrong, let me mention one "symptom" of lupus that is not that common anymore (it used to be, before we had drugs to treat it):
Death.

I haven't experienced that one yet (came close, but no). And that's because there are treatments available for lupus. Only 50-60 years ago, lupus was a death sentence. Today, for most people, it is not, as long as you monitor the disease and do what you need to do to stay healthy.

There are 2 ways to go once you get diagnosed, and you can do both at once:
- regular medicine (lab tests and medications- regular lab testing is important!)
- alternative medicine (dietary changes and healing modalities)

I'll talk about these in another post.

The important thing is, if you are sick, find out what you've got so you can get a plan of action together.

Think you might have lupus? Here's a quiz from the Lupus Foundation of America
http://www.lupus.org/newsite/pages/lupusChecklist.aspx

Carla Ulbrich

http://www.thesingingpatient.com
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Come Back When You're Sicker

A few months ago, I was sitting outside in the sun. Upon coming inside my
hands started burning as though I had stuck them in the snow- it was around 60 degrees that day. Soon after I developed a rash on my hand. Then intense pressure in my fingernails which lead to them turning purple and then brown. My hands started aching and feeling weak. They progressively got worse. Now I have days that all I can do is cry bc of he pain and weakness in my hands and arms.

My blood work came back positive for ANA and SS-B but negative for SS-A. I have been waiting to get in with a rheumatologist for almost two months. After a very difficult day last week with my hands and arms, my primary care physician put in a referral to get an EMG and meet with a neurologist in a week.

I am really losing hope and feel like I am losing my mind. 12 yrs ago I was diagnosed with anticardiolipin antibody syndrome but once I got pregnant with my second child I was told it was a misdiagnosis. Does any of this sound familiar or can you point me in the right direction? I just want answer to what is wrong with me.


Hi there-
Thanks for writing in.

I'm so sorry about the long wait for the specialist. I have been there, and it's really frustrating. Sometimes I think they make us wait so our symptoms can get worse, which makes us easier to diagnose. Doctors have said to patients with "mild" symptoms "Come back when you're sicker." If it's bad enough, it'll be so obvious even a caveman can diagnose it.

It sounds like you at least have Raynaud's (the discolored and painful fingernails when exposed to cold),  possibly lupus SLE (the other tests and symptoms do sound autoimmune). Plus you have a history of autoimmune activity. Perhaps the anticardiolipin antibody syndrome was real- not a misdiagnosis- and it went into remission with the pregnancy. 

I'm only guessing. I can't really diagnose anyone over the internet (especially since I'm not a doctor or even a nurse, just a fellow patient, and a holistic health coach).

My real "expertise" is that I have had lupus SLE, Raynaud's, Fibromyalgia, and Sjogrens, for 20 years. So those are the illnesses I am most familiar with. They are all autoimmune, and it's very common for someone with an autoimmune disease to find out they have another autoimmune disease. Or 2. Or 3. They are generally all treated the same way, with immune suppressants, which will get the symptoms under control.

Raynaud's is not a big issue for me, in that I just don't let my hands get cold, then I don't have any symptoms. If they do get cold and they hurt, I run them under warm water for a bit. But I'm not sure my Raynaud's is a severe case. My bigger problem has been the lupus. Everyone is different.

Over the years I've found some natural medicine that has helped me to be drug-free and in remission. But I have used and will use medications if things get out of control.

If things get bad enough for you (hopelessness/ unbearable pain), just go to the ER, or to an Urgent Care facility, and try to get some answers and some relief. I was diagnosed with lupus at an Urgent care center after spending the night in the ER because I was in so much pain. Maybe you can at least get some kind of medication that will stop the pain.

Not knowing what's wrong is a tough place to be.
As is being in pain. So if you need some help or relief before your appointment finally rolls around, go ahead and do that for yourself rather than just suffering while you wait.

I wish you speedy and compassionate care-
Carla

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
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http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

How Is Lupus Diagnosed?

Lupus is diagnosed using a combination of symptoms and lab tests. Your medical history and that of your family's may also be taken into account. There is no one specific "lupus test." Here are some classic symptoms:

• extreme fatigue (tiredness)
• headaches
• painful or swollen joints
• fever
• anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
• swelling (edema) in feet, legs, hands, and/or around eyes
• pain in chest on deep breathing (pleurisy)
• butterfly-shaped rash across cheeks and nose
• sun- or light-sensitivity (photosensitivity)
• hair loss
• abnormal blood clotting
• unexplained weight loss
• fingers turning white and/or blue when cold (Raynaud’s phenomenon)
• mouth or nose ulcers

 It used to be if you had 4 of the classic symptoms, they would diagnose you with lupus. But these days they seem to be a bit more hesitant to diagnose people with lupus. Don't know why.

Lab tests run when looking for lupus:

• complete blood count (CBC)
• urine test (for kidney involvement)

for autoimmune activity:

• Antinuclear antibodies (ANA)
• Antibodies to double-stranded DNA (anti-dsDNA)
• Antibodies to phospholipids (aPLs)
• Antibodies to Ro/SS-A and La/SS-B
• Antibodies to Sm
• Antibodies to RNP

for inflammation:

• Complement
• C-reactive protein (CRP)
• Erythrocyte sedimentation rate (ESR or "sed" rate) 

other:

• blood clotting time tests
• tissue biopsies (usually skin or kidney)

For more detailed info on these tests, go to http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2242&zoneid=524

Unfortunately, lupus can look very different from one person to another, and also from month to month in the same person. The immune system is attacking the body's healthy tissues, and that could be any tissue. Heart, lungs, kidneys, brain, skin, you name it.

And for this reason it's not uncommon for someone with lupus to go to doctors for 2-5 years before finally getting diagnosed. I was first diagnosed with lung disease (um, no), then bronchitis (what? I wasn't even coughing- there was no phlegm! I've had bronchitis, I know bronchitis, and you sir are no bronchitis!)- the only helpful part about that was they threw antibiotics at me that made me far worse, and therefore easier to diagnose.

The next guess was Rhuematoid arthritis (getting warmer...), and finally, after a night in the ER and a desperate plea to God to just get me a diagnosis, I got a doctor the next day who took enough time with me to get the whole picture, and she diagnosed me. By that time I was so sick, it was easy to diagnose me (once someone listened to me for more than 5 seconds) because I had every single symptom and the horrible lab results. At that point it was so obvious even a caveman could do it...

For this reason, and because our brains and memories are not at their best when we're under attack, I believe it's very important that we keep our own symptom journal when we are actively ill, in order to help the doctors put it all together. It could greatly shorten the amount of time you spend in the waiting room, with no answers and nobody but Judge Judy to keep you company.

Well wishes-
Carla

What is Lupus?

Found this great infographic to share with you. May is lupus awareness month, and I have been planning to write a series of posts addressing the most commonly asked questions about lupus "What is lupus?" "What are the symptoms of lupus?" "Is lupus genetic?" "Is lupus contagious?" etc... Well, this infographic answers quite a few of the most common questions. But not all of them, so I still have something to write about. Meanwhile, here's a quick guide to lupus for those whose only knowledge of lupus is that "it's never lupus."

Lupus Infographic infographic by manro. 

They need to work Toni Braxton into the "celebrities" section, because she has been very open about her lupus, and that is risky for someone who is still actively pursuing a career in entertainment.

What else would you want to be included on this infographic? 

Carla Ulbrich
PS Just learned that there is a new updated infographic from these same folkswith lots of new info on it:
http://www.achieveclinical.com/news/lupus-awareness-month-purple/

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
http://www.youtube.com/user/carlaulbrich - funny medical songs

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
 

Defending the lupus diagnosis

Hi Carla,

I was diagnosed with Lupus 21 years ago. I understood from that rheumatologist that I had tested positive for ANA.  Now I have moved and am seeing a new rheumy.  She ran tests and my ANA was negative, so she now says I don't have lupus.  I had many positive ANA test results over the years. (Unfortunately I tried to get old records and was told they are not available.) Now the doc says I have Sjogren's. I had the lip biopsy done years ago it was negative, although I do have a dry mouth and teary eyes. I don't dispute that I could have Sjogren's but not in place of Lupus! Isn't just possible I am not flaring or do you have a positive ANA at all times?  The new rheumy won't budge on this, even though 2 previous rheumies treated me for lupus!
Any thoughts on this?

Hi -

Thanks for writing in. This sounds very frustrating, and you are not alone. I've been hearing from so many people over the last few years who have practically every symptom of lupus but can't get any doctor to utter the word "lupus." I'm starting to develop a conspiracy theory over this. It frustrates me on behalf of everyone who is told they don't have lupus when just 5 years ago they would have been told they definitely do.

Yes you could absolutely have both Sjogren's *and* lupus. It is very common for people with an autoimmune disease to be diagnosed with 2 or 3 or even more autoimmune diseases. I've been diagnosed with lupus (SLE), Raynaud's, Sjogren's (all 3 are autoimmune) and fibromyalgia. In my case, they call the Sjogren's "seecondary Sjogren's" which either means it was caused by the lupus or is overshadowed by the lupus (IOW the lupus is the bigger problem in my case).

No one has ever denied my having lupus, but I have definitely had to defend it every time I move and get a new set of doctors. Luckily (ha!) for me, when my lupus flares up, I get every symptom in the book and my ANA goes off the charts and my kidneys start to fail. So the same people who first came in and said to me "WHO TOLD YOU YOU HAVE LUPUS?" like I was lying to them- why would I want to lie about having lupus? - those same people then march in after the tests come back and announce to me "You have lupus," as if they discovered it themselves and are some kind of medical genius. So annoying. So, I kinda get it, how frustrating it is.

Now as to the ANA test. That has NEVER been THE "lupus test." You can have negative ANA and have lupus. You can have positive ANA and NOT have lupus. You'll see on this page from the Lupus Foundation of America (great organization by the way, focused on support and education of lupus patients) that "lab tests alone cannot give a definite "yes" or "no" answer." http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

Similarly, the Alliance for Lupus Research (another great organization, focused on lupus research) says that "no single test can be used to diagnose lupus" (http://www.lupusresearch.org/lupus/what-is.html ).

So anyone who is telling you that you MUST have positive ANA to be diagnosed is misinformed or is looking for a reason to deny you the lupus diagnosis. (This is where I start feeling like a conspiracy theorist- why would they want to deny a patient the correct diagnosis? I mean how do you get correct treatment and education if you don't know what you have? Why?

I wrote a blog post on this topic 2 years ago, comparing the 2 diseases (Sjogren's and Lupus) and sharing my conspiracy theories. I just re-read it and it says everything I would say to you if we were sitting across the table chatting (or ranting).  http://lupusandhumor.blogspot.com/2011_09_01_archive.html

It's my most popular blog post, and that makes me sad.

Meanwhile, Know that a lot of the treatment (immune suppressants) overlap so the treatment may not be all that different.

And also know that the alternative medicine that helps with one autoimmune disease will probably also help the other. (Check out this article from Dr Mark Hyman http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html ).

So, in a way, it doesn't matter a lot which disease you have if the treatment remains the same. In another way it does matter, because having a diagnosis taken away from you kind of feels like all your suffering, in their minds, never happened.

Still, this situation of doctors refusing to diagnose people with a disease they obviously have upsets me very much. I can't see any morally justifiable reason for doing that.

I hope you get the answers and help you need from a doctor who listens to and respects you.

All my best-
Carla


Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

What To Do While Waiting to Get Diagnosed

Dear Carla-

I have been back and forth to my Dr for over two years. I asked for a blood test to check my thyroid. She ordered a full work up after wondering why I was taking all the meds (5 at that time). Every thing was normal except thyroid.

This past fall was the first time I heard the word fibromyalgia. In January I was referred to a rheumatologist, who ordered updated blood work. Now it shows a 36 sed rate on a scale of 0-15 for men and 0-20 for woman being normal. And a positive ANA. The nurse would not explain what this means.  My appt with the rheumatologist is not for another month.

I have not worked in 2 1/2 years. I used to be a flat roofer, extremely active. Nowadays, just going to the store or walking around the block will knock me out for a day. I'm 47 and I just want to know what is going on with my body and to know that i am not crazy.

Hello -
And thanks for writing.
You're definitely not crazy. Something is wrong and you know it.
And the tests confirm it.

An elevated sed rate means you have inflammation.
A positive ANA means you have autoimmune activity. In other words, your immune system is attacking your healthy tissues. It's possible you may have lupus. I do.

The wait time to see a rheumatologist for the first time is always unacceptably long, and I am sorry about that. I don't think health professionals have any idea what psychological burden it is to be in limbo, tired and hurting and having no idea what is going on and why.

What you can do right now is start keeping a symptom journal. Nothing fancy. Just every day, jot down:
- any symptoms (fever, joint pain, rashes, fatigue, etc.).
- your energy level on a scale of 1-10
- pain level, 1-10
- weight and temperature

Then, when you go to the doctor, you'll have a lot of helpful data to give him/ her.

While you're at it, write out your medical history. Jot down
- all the stuff that went on over the last couple years with your health
- any illnesses in your family (blood relatives: mother, father, siblings, grandparents)
- any surgeries or pregnancies you've had
-  a list of all the drugs, prescription and nonprescription, that you are taking now, and how many milligrams of each, how many times per day.

Try to have all that ready before your appointment. Type it up, print it out, and bring it in. Even if they don't read it, you can have it to refer to in case your mind goes blank when they ask you questions. If you're lucky, they will read through it and put it in their chart.

Collecting this info is something you can do now while you're in limbo waiting for your appointment. It beats sitting around doing nothing, and it will very likely help you get the right diagnosis faster. In my book, getting the right diagnosis is so important- then you can figure out what to do next. Once you have your diagnosis, you can either go down the route of medications, or pursue alternative medicine and/ or nutritional changes. But getting diagnosed will keep you from doing something that might make things worse. Knowledge is power.

You can get your health back. I got mine back. It's all possible.
Just do what's in front of you. Pray if you're a praying person- ask to be given excellent help and the correct diagnosis and the next right step. And collect the data. And do something fun to distract yourself from your worries. That's what is in front of you right now.


Wishing you all the best-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?

results of lupus survey

I set up a survey about lupus on surveymonkey.com, with a limit of 100 respondents.
Well, the results are in.

First of all, I sent the results to my husband. It
really hit home with him, after reading everyone's
comments, about how important it is to rest, sleep,
and not have too much stress. he let me off the hook
for a big family gathering today in Yonkers because of
this, and I was able to get the sleep I needed
instead. So I think the survey results might be a
helpful tool in convincing other family members of the
importance of pacing ourselves, and the reality of
this illness.

1) Age of diagnosis: this pretty much confirms
everything you read in the official books, that the
illness strikes largely folks between 20-40, though
people as young a newborn and as old as 60 can still
be diagnosed.

Age of diagnosis:
<15 2.0% 2
15-20 13.0% 13
21-25 15.0% 15
26-30 8.0% 8
31-35 15.0% 15
36-40 13.0% 13
41-45 12.0% 12
46-50 10.0% 10
51-55 6.0% 6
56-60 4.0% 4
61-65 2.0% 2
66-70 0.0% 0

2) how long since diagnosis
less than 6 months 24.0% 24
6-12 months 10.0% 10
1-2 years 11.0% 11
2-5 years 20.0% 20
5-10 years 19.0% 19
10-15 years 10.0% 10
more than 15 years 6.0% 6

3) symptoms experienced:

Though some symptoms were more prevalent thatothers,
every symptom was experience by more than one person,
so no one is alone is their experiences.

I probably should have asked gender (sorry about all
the ovary, breast and period questions, guys!)

most common to least:
Achy joints / arthralgia 92.9% 92
Exhaustion over little to nothing 89.9% 89
Arthritis / swollen joints 85.9% 85

Prolonged or extreme fatigue 79.8% 79
confusion/ forgetfulness 78.8% 78
painful/ swollen joints 77.8% 77
Sun or light sensitivity / photosensitivity 72.7% 72

headaches 67.7% 67
dry skin 66.7% 66
anxiety 66.7% 66
Raynaud's phenomenon / fingers turning white and/or
blue in the cold 65.7% 65
Easily depressed 61.6% 61

fever 63.6% 63
weakness of muscles 61.6% 61
Mouth or nose ulcers 60.6% 60

Hair loss 57.6% 57
Butterfly-shaped rash across the cheeks and nose 57.6%
57
Chest pain and breathing problems 57.6% 57
bruises 57.6% 57
Sores in mouth/nose? 54.5% 54
muscle cramps 53.5% 53
migraines 53.5% 53
Emotional swings before, during or after the period
50.5% 50
Moody 51.5% 51

neuropathy (nerve pain) 49.5% 49
Skin Rashes 48.5% 48
sometimes you feel fine 46.5% 46
fibromyalgia 46.5% 46
Allergies 42.4% 42
bladder/ urinary tract/ kidney infections 42.4% 42
Pain in the chest on deep breathing / pleurisy 42.4%
42

poor appetite 37.4% 37
diarrhea 39.4% 39
visual disturbances 39.4% 39
Malar rash 37.4% 37
anemia 37.4% 37
Other rashes 36.4% 36
lesions on skin 35.4% 35
sinus infections 33.3% 33
thrush/ yeast infection 30.3% 30

hives 27.3% 27
Painful Periods 26.3% 26
Heavy Periods 28.3% 28
Kidney Involvement 25.3% 25
Abnormal blood clotting problems 27.3% 27
food allergies 24.2% 24
Irregular periods 24.2% 24
frequent bronchitis 22.2% 22
Ovarian Cysts 22.2% 22
sinusitis 21.2% 21

other cysts 12.1% 12
Dense breast tissue 12.1% 12
Seizures 11.1% 11
Breast Cysts 10.1% 10
Breast lumps or other breast complications 10.1% 10

Pituitary problems 7.1% 7
stroke 9.1% 9
congestive heart failure 3.0% 3

other symptoms:
-nonfunctioning gallbladder
-stomach infection (Helicobacter pylori), Otitis Media
-frustration/anger
-rib pain
-frequent sore throats
-mouth ulcers/vaginal ulcers
-muscle weakness
-To varied to mention
-double vision, tinnitis,cough syncopy,
-Low Blood Pressure and Temperature until I run a
fever
-irisitis - inflamation of the muscle around the
cornea
-dizziness/vertigo
-pericardial effusion
-Hearing loss
- irregular and slowing heart rate/pacemaker implant


4) time between 1st lupus Dr. visit and diagnosis:

less than 3 months 26.5% 26
that is encouraging to me- maybe people are getting
diganosed more quickly now that they used to be.

3-6 months 9.2% 9

6-9 months 8.2% 8

9months-1 year 12.2% 12

12-18 months 8.2% 8

18-24 months 3.1% 3

longer than 2 years 32.7% 32
this is disturbing! the kind of thing that makes us
feel like hypochondriacs, which can result in our not
going to the doctor soon enough when things are quite
serious.


5) which medical treatments have you been on for
lupus?
Not surpisingly, Prednisone and plaquenil are king. it seems Drs
are moving toward plaquenil to avoid using prednisone,
which we all know is extremely effective but awful
long-term (I still want it as my first option in a
flare, because it works! and then I want to be off it
within a year, because it sucks! talk about a
love/hate relationship). I probably should have lumped
antidepressants into one question instead of listing
specific ones, because that is what i did with the
blood pressure meds.. and clearly from the large
number of "other" there were some major meds I forgot
to list as options, specifically methotrexate,imuran,
NSAIDs, muscle relaxers. the survey results regarding treaments on dailystrength dot org, were also very
revealing in that there are so many treatment options
available to us.

most popular:
placquenil 89.2% 83
prednisone 73.1% 68
vicodin 29.0% 27
aspirin 24.7% 23
blood pressure meds 36.6% 34

chemotherapy 19.4% 18
IV prednisone 18.3% 17
cellcept 17.2% 16
neurontin 17.2% 16
wellbutrin 15.1% 14
lyrica 15.1% 14
percacet 14.0% 13
paxil 12.9% 12

prozac 9.7% 9
transfusions 8.6% 8
Procrit 3.2% 3

Others:
- rituxan
- Celebrex & Norflex
- diuretic, singulair, zocor
- quinine
- Fiorocet
- Methatrexare,Oxtcontin,Zoloft,Muscle relaxer
(skeleton)
- lortab
- Artrotec Amitriptyline co-codamol short courses of
prednisone. all in Ireland so may be different names
- zoloft, fludrocortisone,cimetidine
- lamictal, zonegrain, effexor xr, evoxac,
- methotrexate
- Salgen for Sjogrens and Effexor for depression and
pain
- imuran
-. Amitriptaline 10mg
- Etodolac and Lexapro
- enbrel
- minocin
- MTX
-All the Nsaids, now on Ibuprophen, also on Cymbalta
now for nerve pain and depression
-mobic, ibuprofen, Celebrex, darvoset, and a bunch of
different NASID's I can't remember them all.
- Aggrenox (blood thinner) due to APAS
- Zoloft and Klonopin
- imuran
- warfarin
- Cymbalta,Lortab,Isosorbide(for heart)
- Imuran, methotrexate, amitryptyline
- sodium bicarb for kidneys...& it looks like an iron
supplement (just diagnosed with anemia, waiting on
another blood test)
- Naproxen
- atenolol,tolfenamic acid
-amitryptiline/nortryptiline and tramadol for pain,
meloxicam for inflammation
-Tramadol
-just dx this week, so nothing yet
- imuran, mtx, rituxan
-blood pressure meds, migraine meds
- migraine meds, phenegren
-Cymbalta, Allegra, DHEA
-Kratom (herbal)
-gold salts for RA, Potassium, Iron, Calcium for
nutrient losses


A couple people commented that their doctors are not helping them manage their pain. I have experienced this as well, and may include a question about this on a future survey.

6) other diganosis?
I was a little concerned by therse results that the
osteoporosis and diabetes might be prednisone related.
i probably should have listed all autoimmune diseases
(incl RA) as well as migraines and asthma. anyone know
what APS or umctd are?

i think the number of us with depression and anxiety
is normal, given not just being diagnosis with a
chronic illness, but the lack of understanding and
even stigma- the social crap that comes along with it,
as well as the financial drain, and having to redefine
ourselves as we are no longer capable of doing some
things we used to do.

raynaud's 59.3% 51
depression 53.5% 46
anxiety 47.7% 41
fibromyalgia 45.3% 39
sjogren's 36.0% 31

osteoporosis 14.0% 12
crohn's 5.8% 5
diabetes 5.8% 5
cancer 4.7% 4
scleroderma 3.5% 3


others not listed:
- aps
- chronic renal failure, asthma, SLE, hypertension,
cholesteremia
- Endometriosis
- Neuropathy,Disk Disease,
-mixed connective tissue
-allergies, asmtha, possible MS
- grave's and celiac's
- umctd
-osteoarthritis, Degenerative disc, COPD, pulmanary
fibrosis, migrane syndrome
- Arthritis...not sure which type and Diabetes w/
insulin(but not a true Type 1
- polymyositis, MCTD, hypothyroidism
- Graves
- migraine, chronic fatigue, endometriosis
- RA
- Thyroid Disease
- pretty sure fibromyalgia - just not yet dx
- Mixed Connective tissue disease
- interstitial lung disease
- IBS
- Hughs Syndrome
- brain tumor
- Chronic Kidney Disease stage IV, Interstatial
nephritis (forgive the spelling)
- none diagnosed
- PKD
- endometriosis, mitral valve prolapse, pulmonary
valve prolapse
-vasculitis, peripheral neuropathy, APS, RA
- RA
- Hypermobility Syndrome
-Rheumatoid Arthritis, Congestive heart failure,
Kidney disease


7) do you think any of these things might have
contributed to your illness?
Stress is king here. you all brought up some
interesting culprits in the "other" section, such as
too much antibiotic treatment, tanning beds,
pregnancies. I should have also listed "genetics."

most popular:
stressful working conditions 66.7% 44
repeated sunburns 39.4% 26
unhealthy relationships at home 30.3% 20
smoking 28.8% 19
drinking diet soda daily 21.2% 14
eating mostly packaged/ processed food 21.2% 14
excess salt/ sugar intake 19.7% 13
eating/ drinking nurtasweet (asparatame) 19.7% 13
sedentary lifestyle 16.7% 11
living near pollution source 6.1% 4
vaccines 9.1% 6
extensive dental work 9.1% 6
Sexually transmitted diseases 1.5% 1

others not listed:
-tanning beds
-Antibiotics - lack of enough digestive enzymes
-hereditary autoimmune diseases
-Family history
-Stressful Life--deaths in the family (3 within 2 1/2
years, husband was ill too
- dont know was under 10 years when first symptoms,
would have had a good healthy diet, no dental work, no
sunburns hey I live in Ireland. ha
-Having triplets and a husband who has been to Iraq
three times!
-bad genes
-i had kidney problems at birth, was jaundiced and my
mother recently told me that the hospital i was born
in was undergoing construction at the time.
-My problems began after having Hepatitis many years
ago
- Continuing to go to school with glandular fever /
excessive dieting / excessive exercise
- severe eating disorders in my youth
- skin type
- hormone treatments
- Possible PCB poisoning from childhood
-Since I have had this since early childhood, I have
no idea
-I have psychological problems (namely bipolar) that
I've had for years that seem to at least be aggravated
by lupus

8) Which of the following non-medical treatments have
you pursued?

most popular:

supplements 59.2% 42
diet modification 47.9% 34
journalling 39.4% 28
herbs 38.0% 27
meditation 33.8% 24
psychotherapy 32.4% 23
acupuncture 26.8% 19
food allergy testing 21.1% 15
Reiki 14.1% 10
detox therapies 11.3% 8
lymphatic massage 9.9% 7
bodytalk 5.6% 4
Qi Gong (Chi Gong) 4.2% 3
Tai Chi 4.2% 3
fasting 4.2% 3
cranioscral therapy 2.8% 2
chelation therapy 1.4% 1
biological dentistry 1.4% 1

others not listed:
- prayer
-massage, but not sure if lymphatic, jacuzzi for sore
muscles
-rolfing
-If covered by insurance, I'd try most of these
options!
-yoga
-chiropractor
-Seeking medical treatment
-I've begun a very all natural/organic diet that has
helped alot!
-Regular gentle exercise
-water aerobics


I found moSt interesting how popular journalling is! a
healthy outlet for all those feelings. I have done SO
much writing during these last 16 years of dealing
with lupus. it's not just me!

further i want to point out - someone said "if covered
by insurance i'd try all of these!"
you might be surprised what is covered by insurance.
my old insurance covered chiropractic (which i
eventually gave up on, but at least i only paid $7
co-pays to find that out), and my new insurance covers
acupuncture! some will cover massage if your Dr
prescribes it. so don't just assume it's not covered. And of course journalling is basically free. you can get spiral bound notebooks for 10 cents during back-to-school sales.

9) have you ever lost a job because of lupus?
I was fired 6.9% 5
I was laid off 2.8% 2
I had to cut back to part-time 26.4% 19
I continue to work full-time 31.9% 23
I was not employed at the time I became ill 31.9% 23

-I could not keep my job as they foun dout about my
disk disease..shortly after getting fired I found out
I had lupus and it was no doubt the cause of the pain
I was having everywhere.
- left job had no diagnosis at the time, but too
tired to function, medical field, could not take
chances
- I had to quit because of Sjogrens, and fibromyalgia
and MOSTLY EXHAUSTION 5 years ago
- other jobs, I have only took part time because of
exhaustion
- had to leave because of my health
-I had to go out on disability because I missed 60
days in one year
-I quit and went on disability
-Twice

I have to interject here, IT IS ILLEGAL TO FIRE
SOMEONE BECAUSE OF THEIR ILLNESS. YOU CAN SUE THEM.

Furthermore, DO NOT WAIT to apply to disability. the
longer you wait to apply, the lower your benefits will
be because your income is based on the previous 7
years' work record. Take it from someone who knows firsthand.

10) What have you found most effective in controlling
your symptoms?

#1 answer: rest, sleep, rest, sleep, rest!!!!!!!

- Therapy! It's great to have someone who has to
listen to you talk about everything that is going on
and takes you seriously.
- So far, the prednisone, with side effects. Also,
taking advil and pain meds when needed
- none
- Too early to say since I've only been diagnosed 1
week ago, but in the past few weeks I have trying to
adopt a very healthy and fresh diet, avoiding some of
the foods that are usual suspects in food
intolerances, such as dairy and wheat.
- Lots of rest
- Lots of rest, meditation and trying to keep stress
to a minimum also no alcohol or smoking really helps.
- So far, Prednisone is the only medication that
takes a flare away. I haven't been on Plaquenil long
enough to evaluate its effectiveness yet. Staying out
of the sun and trying to avoid being overworked and
overstressed helps but the latter is almost
impossible. I can barely keep working full time.
- acupuncture, prednisone, relaxation techniques
- Darvocette's, Ultram
- I was just given prednisone and it has helped me so
much. The inflammtion was making me have so much
swelling,pain and I was short of breathe..now I feel
better!
-avoid stress, try to have positive approach to the
stresses that do present themselves. try not to
concentrate on what I cant do but on what I can. pace
things rest frequently. meds as above when required.
hot baths. massage. some days nothing works..
-none
- still learning, natural lifestyle does help with my
sjogrens
-phase 3 belimumab study
- Resting and Sleeping a lot!
- Sleep, control stress, relaxation, no sun
-Keep out of warm sun
- limit stress, take meds as prescribed, hobbies,
stay involved in life, get back in some way
(volunteering)
- Lots of rest helps, and working straight days has
helped so I maintain a regular sleep pattern, this has
enable me to stabalize and control my fatigue in a
major way.
- staying on schedule for drugs and recognizing
symptoms early and ACTING on them. Not waiting because
we are crazy LOL
-I haven't really found any that I would say are
effective. 14yrs and I have not had a remission longer
than 2 good days in a row.
- Prednisone,Cellcept, Not to let toxic relationships
bother me.
- nothing!!!
-Not sure yet...still going thru 'the process'.
Placquenil made the most dramatic difference so far as
meds. I haven't been put on an effective pain relief
yet! My Rheumy has suggested a low dose of
Methotrexate to add to my mix of meds, just 2 wks ago,
to control my Arthritis pain and symptoms, but I'm not
sure that it will help...I think I just need more
adequate pain relief to relive my symptoms. I don't
want to go on Methotrexate or any of the 'damage
causing' meds unless I have too. I don't feel I'm at
that point and I think Dr's put us on THOSE drugs too
easily and too soon w/out understanding all of the
ramifications to us! I am going to look into
alternatives, altho money is ALWAYS an issue because
that option isn't covered by insurance.

-changing my diet, eliminating chemicals, yoga,
chemotherapy, sleep.
- Prednisone, naproxine
- not working anymore...
-Actually I have not been properly diagnosed yet. I
have signs and symptoms consistant with RA and Lupus
and could likely have both and a few other things as
well. I am planning to return to work soon.

- exercising whenever I can/remembering to pace
myself (I try!) being around positive people as much
as possible, plaquenil, vicodin - am starting on
methotrexate in 2 days. My counselor is helping me to
learn "body talk"

- Plaquenil has helped me more than anything.
Sometimes I think food plays a role too.
- Going to bed BEFORE I become exhausted to the point
that I can't go to sleep. Listening better to my body.
Rituxan treatment.
- diet control has been helpful
- I've just begun taking plaqunil and it seems to be
helping.
- I am still trying to find effective ways... I
really like the idea of getting help from other Lupus
patients...they have been there themselves vs. the
docs!

- diet control - I now see a Naturopath as well as my
regular lupus doctor at the hospital.
- Plaquenil made the biggest difference. Staying out
of sunlight and unfiltered fluorescent light is also
important. Rest when not working is essential. I've
had to let go of a lot of things - friendships,
hobbies, certain recreational activities.

- just taking notice of body changes, when i feel
good i do things and not over strach my activities.

-DHEA has hugely improved my quality of life. So have
the pain meds.

- I try not to feel sorry for myself mostly. I go
through periods of depression and I always feel worse
but when i accept it and just deal I feel a little
better.

- Getting enough sleep and not overtaxing my body.
- none as of yet :/

- Prednisone helped with the pain but other than that
all symptoms persist and new ones have appeared.

-The CellCept brought me back from the brink of total
kidney failure very quickly. Plaquenil has helped
immensely too. I walk often and rest often.

- taking medications regularly resting frequently
staying out of the sun wearing sunscreen every day

- I do not have control, I just go with the flow, and
my docs treat symptoms as they arise. I think this is
why I am still alive today, because they did not wait
for positive ANA's, they went with their gut.

-This is hard to answer. When multi-system
involvement occurs, I needed prednisone. Acupuncture,
whole foods, herbal medicine and chiropractic help me
manage lupus and my life. The hard meds are there for
severe flares and disease treatment.

- Resting when needed. Adjusting my diet and avoiding
direct sunlight.

- keeping healthy. my biggest problem at the moment is
light sensitivity...malor rash. Spf 70,makeup and a
hat dont prevent rshes on my face. soo very
frustrating.