A silly place filled with caffeine induced ramblings of this person named KarmaGirl....or something.
What I do to keep healthy
Published on March 1, 2013 By KarmaGirl In Life, the Universe and Everything

My previous article was a bit of a glimpse into what it is like to live day by day with Lupus.  It was just a slice of my daily life, but I didn't talk about things that I do to try and help myself stay healthy and active.

There is a balance that has to be found in life.  With me, my biggest struggle is finding a way to manage pain enough to stay active, but to not take so many medications that I'm stressing my liver.  You can't live without your liver, and since mine's not that great, I concentrate on making sure I do what I can to help it out.

There are 4 main categories that I will throw things in for this article: 1) Diet, 2) Activity, 3) Medication, and 4) Daily routine.

#1- Diet.  Don't underestimate food.  If you eat like crap, your body has to deal with that crap.  I have spent the last 14 years of my life trying to figure out what foods trigger flares, rashes, and fatigue.  Here is some of what I've learned about myself:

Meat- it's what's rotting in your colon.  It produces ammonia during digestion, which then causes your liver to have to convert it so that your kidneys can rid it from your system.  This taxes your liver and kidneys.  You also then get the cholesterol to deal with, and animal protein to digest, which is much harder on your body.  In the past 5 years, I have gotten my cholesterol into the "normal" range, and have increased my liver functions by not eating meat.  I was a vegetarian longer than that, but I was also making other changes, so I'm not sure what affected what before the past 5 years.

Veggies- Eat them.  Get at least 6 servings of fruits and veggies a day.  They have nutrients that your body needs to heal itself.

Dairy- Dairy can be evil.  I am allergic to it (gives me hives).  I would suggest using it in moderation.  You don't need dairy to get calcium and Vitamin D- there are plenty of other foods that will provide that, assuming you aren't just eating junk.

Eating out- Don't do it often, and don't eat fast food.  There is too much salt and fat in restaurant food.  There is no sense in getting a flare over food.

Soda- It's a can of delicious chemicals that you should really moderate.  It doesn't help your body at all, so only have it as a treat.  

 

#2- Activity.  Keep moving, even if it hurts.  When I was diagnosed with Rheumatoid Arthritis 27 years ago, the thought then was "if it hurts, don't do it".  Luckily, a doctor told me that I would be in a wheelchair by 21.  Why was that lucky?  Because, being the young shit-head that I was, I thought "well, if I'm going to be in a wheelchair anyway, why should I care if I'm hurting my joints?"  Luckily, I kept active and ended up staying mobile.  If you don't keep moving, you will end up in bed feeling sorry for yourself, and soon you will decide one day to just stay in bed and let somebody else clean up your poo.  Don't do that- get your ass up and move.

 

#3- Medication.  Now, this is a tricky one.  Everyone senses pain differently, so not all pain meds work the same, and not everyone needs the same treatments.

This is what I take on a daily basis:
1) Armour Thyroid - I've had my whole thyroid removed due to 32+ cysts and nodules
2) Hydrochlorothyazide - BP medicine.  Most people with Lupus have high blood pressure
3) Effexor XR- This is for pain management, though it has helped my OCD a bit.  I rather be on Cymbalta, but my insurance won't pay for it, and I don't want to pay $200 a month.

Now and then I get a flare that won't go away and I go on Plaquenil for a couple months.  I could avoid some flares by staying on it, but I just don't want to put my liver through that.

Pain Management:
1) Good Old Naproxen
2) Tramadol for when Naproxen just isn't enough
3) Vicodin for when Tramadol doesn't cut it
4) Flexeril for when my muscle spasm for no good reason

Then I have a very interesting one- vaporized nicotine.  Now, this is not "smoking", it's nicotine in a suspension that is used for other medical uses, such as asthma inhalers.  Nicotine is not cancer causing, and after many tests, it has actually lowered my bp.  Seems like an odd treatment?  Well, they have been testing nicotine post-op for quite some time.  There are studies going on, like the one I'm in, that shows that it is very effective at pain management.  Why? It is believed that Nicotine raises the level of dopamine in the brain.  The brain converts dopamine into norepinephrine.  Now, if you look at Cymbalta, which is approved for pain management, one of its main features is that is raises levels of norepinephrine.  If anyone is interested in further information of how I use Nicotine and what equipment I use, let me know and I'll write its own article.

 

#4- Daily routine.  This seems like something that isn't a factor in keeping healthy, but it is.  It's important to go to bed and get up at the same time each day.  Now, I have insomnia and sleep apnea, so I don't always sleep much, but keeping yourself in a routine is a good thing.

I have also identified skin irritants, such as perfumes, anything that's not cotton, many lotions, soaps, etc. that I avoid.  I make sure that I start my day with a shower, check for any body parts that have a new rash or other afflictions, and then apply topical treatment to the rashes.  Keeping clean and keeping the rashes under control is important since Lupus effects the skin heavily, and your skin can really throw you for a loop if it's not healthy.  I also use very little make-up and try and be as gentle on my skin as possible.

Eat at about the same times everyday.  Eat smaller meals and more of them.   With Lupus, as mentioned, your liver is at risk.  Smaller, frequent meals are easier on your digestive system, are less taxing on your liver, and help maintain glucose levels.

Have downtime.  It's easy to get so busy that you get too stressed and cause a flare.  Make sure that you take at least 30 minutes each night to just calm down before going to bed.  I find sitting in a quiet room petting dogs is the best for calming me down.  It lets my brain settle, and it's always great to snuggle with wiener dogs.  If I am really stressed, I will opt for a 20 minute session of meditation.  I see it as a "reset" for my brain.  Lupus also effects brain chemicals, so it's easy to get a bit on the bat shit crazy side.  Prevent that my giving your brain a rest.

 

Well, I probably have more to say, but I've already written a book.  If there is anything that anyone would like more detail on, or has questions about, let me know! 

 

 

 


Comments (Page 2)
on Mar 02, 2013

KG and Po, I keep you both in my thoughts and prayers....

 

Lots of love.   HG.

on Mar 03, 2013

Po, sorry to hear about all the pain you have.  Not everyone is as fortunate as I am to have a job that they can keep working at.  If I has to be on my feet, I wouldn't be able to do it.  Grocery shopping makes me fatigued and sore, so there is no way I could work on my feet.

Oh, another tip I have for pain management is getting a memory foam bed.  I have horrible pressure points from fibromyalsia, and the memory foam bed has made a world of difference.

Right now, I have a flare going.  I have a classic face rash, a swollen nose, and more joint pain than I care to deal with.  Luckily, it's the weekend, so I should be ok'ish by Monday, which is good since Brad has a policy against being crippled at work.   (that's a joke, in case people don't know me well enough)

on Mar 03, 2013

KarmaGirl
it's the weekend, so I should be ok'ish by Monday, which is good since Brad has a policy against being crippled at work.

LOL

My memory foam mattress has alzheimer's ....

on Mar 03, 2013

I feel for you Po & KG...I'm sort of in the same boat...constant pain/discomfort...good days just suck....bad days even more so...problem for me is I have enough drugs to fill 1 1/2 of those large zip lock bags and nothing is working...they will one day though. This has been going on for about 4 + years now and it's really getting old. Each day/week/month/year it just gets worse. Pretty much at the point on just giving up on doctors finding out anything and letting things just run the course of whatever is going to happen. I'm giving it one more shot with a new doctor...problem is they are very slow at doing anything and very forgetful. He decided to do a trial and error of some different meds...only problem is it took him 3 days to remember to actually call them in to the pharmacy. The other problem is if you ask for something strong they think your a drug addict just looking for drugs. You just can't win. The only relief I get at this point is lying flat on my back or which ever position bothers me the least at the moment and move as little as possible.

on Mar 03, 2013

My memory foam mattress has Alzheimer's ....

 

That's a quotable (although it sounds more like Joan Rivers than Jafo)... I'm pilfering it as such. Love it.

 

 

on Mar 03, 2013

KarmaGirl
 If I has to be on my feet, I wouldn't be able to do it.  Grocery shopping makes me fatigued and sore, so there is no way I could work on my feet.

Ditto. Though there have been some pretty heated arguments in my house about my attempting to. I'm tired of watching my wife kill herself and my attitude is if I can do it for just a few days to bring in some money, who cares if I get fired or have to quit cause I can't keep it up, I'll just go get another job when I recover enough. The most mazing thing is that I am constantly discovering that just when I think my pain can't get worse or I can't take anymore, I am proven wrong and adapt to a whole new level of pain. Their stupid 'scale of 1 to 10 chart' is too narrow when you're in this kind of pain or the pain you experience. 

KarmaGirl
Oh, another tip I have for pain management is getting a memory foam bed.

We did manage to get a new mattress before I was no longer able to work and it has made a huge difference in the number of hours I can sleep. My condition is degenerative, so I'm not sure it would matter 'what kind' of mattress it was as the condition seems better at adapting to treatments than I am to it, if that makes sense.

KarmaGirl
 I have a classic face rash, a swollen nose, and more joint pain than I care to deal with.

The flare ups were rough for my mom. I imagine they are harder for women in general. My mom wouldn't leave the house when a rash broke out on her face. I didn't think thye looked as terrible as she must have when she looked in the mirror, but then I'm just a 'guy' so..

WebGizmos
The other problem is if you ask for something strong they think your a drug addict just looking for drugs.

I am right there with you in all you said. Last week, on my monthly visit to PM, they wanted to stop everything and switch to three ALL NEW drugs I never heard of before. This after being on fentynal patches for two months and going through 8 days of pure hell when they stopped two drugs that no one EVER bothered to tell me would have severe withdraw effects. I lost it in the office. Complete melt down. I pretty much told them I couldn't do it and wanted to go back...backWARDS...to something that didn't work as well. I would rather be in more pain and not have to deal with sleeping 16 to 20 hours a day and the depression from that than go deeper into this drug game and have a whole new list of side effects and withdraw to stress over. I'm about at the end of my rope with all of this, but like the pain I keep saying I can't take if it gets any worse, I always find a way to deal, adapt, tolerate, or just grit my teeth and fake my way through moment by moment. As cliche as it sounds, as much as we get tired of hearing certain words and phrases thrown at us, sometimes I have to believe that in the end, we are not given more than we can handle. 

on Mar 03, 2013

HG_Eliminator

KG and Po, I keep you both in my thoughts and prayers....

 

Lots of love.   HG.

And to you, HG.

 

@Po'-

You should have been informed. Period.

Wish there were some other way to do it than trial and error... but in reality, there isn't. There's just no way (at this point) to predict who wil react one way or another, just probabilities. Doctors learn to accept that from the "providing" end, but rarely get to experience the "receiving" end.

on Mar 03, 2013

PoSmedley
I am right there with you in all you said. Last week, on my monthly visit to PM, they wanted to stop everything and switch to three ALL NEW drugs I never heard of before. This after being on fentynal patches for two months and going through 8 days of pure hell when they stopped two drugs that no one EVER bothered to tell me would have severe withdraw effects. I lost it in the office. Complete melt down. I pretty much told them I couldn't do it and wanted to go back...backWARDS...to something that didn't work as well. I would rather be in more pain and not have to deal with sleeping 16 to 20 hours a day and the depression from that than go deeper into this drug game and have a whole new list of side effects and withdraw to stress over.

Yeah I hate the "lets try this" game. My newest doctor is at least willing to try something new and is open to "My" suggestions. The problem though is I have no idea what these new drugs do until you take them. My most recent test...his idea...made me sick as hell for 2 days...1 being the day I actually took the drug and the 2nd from getting it out of my system. I told the doc that if the plan was to make me sick as hell so I could feel better when I stopped taking it...mission accomplished. Now I'm just waiting for the next batch of goodies to try. All the "good" drugs I had heard so much about and tried might as well have been made from chalk since they did nothing for me so far. And I love it when they tell you it might take a week or so before it takes effect. I told them to take their best shot with any ass kicker drugs they have and then back off rather than start with Flintstones and work their way up.

And KG...I'm sorry to hear how your problem effects you appearance wise. It's bad enough dealing with the pain and discomfort, but the outward effects just make it worse for you. My only outward appearance is having my walking affected...each step feels like I just ran a marathon...which then causes my back to feel like its breaking. But my left side from my hand to my shoulder and down my mid section front to back feels like Popeye's arm looks...on a good day...then I have days where it feels like someone stuck a bicycle pump in my arm and is pumping it up to the point of exploding.

But I can't even imagine having to deal with lupus all my life.

on Mar 03, 2013

Have any of you guys tried Cymbalta for pain management?  Effexor XR works the same way.  It seems to help you cope with pain more than actually get rid of it.  The only downsides are that it takes about 2 weeks for it to start working and it's a real bitch to get off from.

on Mar 03, 2013

WebGizmos
Yeah I hate the "let's try this" game.

DrJBHL
Wish there were some other way to do it than trial and error... but in reality, there isn't. There's just no way (at this point) to predict who will react one way or another, just probabilities. Doctors learn to accept that from the "providing" end, but rarely get to experience the "receiving" end.

 

on Mar 03, 2013

KarmaGirl
Have any of you guys tried Cymbalta for pain management?

yes. And not to 'bad' mouth, as each experience is to the individual, but that was one of the drugs I just came off of last month and went through some hellish withrdraw over, along with lyrica. I have been on some wicked drugs but the cymbalta and lyrica take the freaking cake for withdraw. I would rather go through the three or four days of hell getting off of cigarettes in October than I would dealing with those two drugs again.

DrJBHL
You should have been informed. Period.

 

That's what we have you for. Geesh. Wake up and smell the coffee, whydontcha.

on Mar 03, 2013

@  calcium and iron.  I'm no expert.  Somewhere along the way I learned that taking Ca and Iron at the same time wastes much of the benefit.  Something about Calcium and iron using the same channels through the cell membrane.  Was recommended to take them at different times during the day.  Hope this helps, even if only a little. 

on Mar 03, 2013

PoSmedley
That's what we have you for. Geesh. Wake up and smell the coffee, whydontcha.

On anyone else's thread you'd have been shopped into oblivion for that. As it stands, you're unlikely to come off the List. Evah.

on Mar 03, 2013

Yeah, Cymbalta is not ready to get off.  It has terrible withdrawal symptoms.

BTW, vitamin D is something that anyone with bone pain should get checked regularly since a deficiency can increase bone pain. 

on Mar 03, 2013

KarmaGirl
It has terrible withdrawal symptoms.

It should not be withdrawn suddenly. An SSRI (like) withdrawal syndrome can occur. Cymbalta is an SNRI drug, but has very similar withdrawal symptoms. VERY unpleasant. 

Eli Lilly, the manufacturer of duloxetine - brand name Cymbalta - warns that "one should not suddenly stop taking this medicine, as this may cause withdrawal symptoms such as dizziness, pins and needles sensations, nausea, difficulty sleeping, intense dreams, headache, tremor, agitation or anxiety. Withdrawal symptoms are temporary and are not the same as addiction." These responses could constitute physical dependence on the drug, but SSRI users do not experience the craving, impulsive use, or long-term relapse risk seen in drug addiction.

During marketing of other SSRIs and SNRIs (serotonin and norepinephrine reuptake inhibitors), there have been spontaneous reports of adverse events occurring upon discontinuation of these drugs, particularly when abrupt, including the following: dysphoric mood, irritability, agitation, aggressiveness, dizziness, sensory disturbances (e.g., paresthesias such as electric shock sensations), anxiety, confusion, headache, lethargy, emotional lability, insomnia, hypomania, tinnitus, and seizures. Although these events are generally self-limiting, some have been reported to be severe.

Patients should be monitored for these symptoms when discontinuing treatment with Cymbalta. A gradual reduction in the dose rather than abrupt cessation is recommended whenever possible. If intolerable symptoms occur following a decrease in the dose or upon discontinuation of treatment, then resuming the previously prescribed dose may be considered. Subsequently, the physician may continue decreasing the dose but at a more gradual rate.

Tapering process may be moot for some patients, and they will still have discontinuation/withdrawal symptoms.

Many patients on the drug longer than the Lilly test trials on discontinuation (which only studied patients after 9 weeks of exposure to cymbalta), report anecdotal evidence of major withdrawals from cymbalta lasting from weeks to many months. Since duloxetine is a newer drug (FDA-approval 2004), not many peer-reviewed articles have been published on its adverse effects or withdrawal phenomena, and effect of long term use is still unknown.