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 3)
on Mar 04, 2013

DrJBHL
It should not be withdrawn suddenly.

They had me taper off but I think they gave me half assed instructions on it and thought the replacement they were tapering me 'on' to would make it go easy.

They were wrong.

They were very very wrong.

My wife can verify that they were wrong if she ever comes out of the attic where she went to hide from me.

Because they were very very very wrong.

on Mar 04, 2013

DrJBHL
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.

Okay, so getting off it too quickly produces what I face/endure most days.  Please remind me NOT to take it... thus avoiding the potential trauma of coming off it.

on Mar 04, 2013

I went cold turkey with Cymbalta.  I don't recommend it.  I think I was talking to Elvis for a couple days.

on Mar 04, 2013

PoSmedley
Because they were very very very wrong.

KarmaGirl
I think I was talking to Elvis for a couple days.

Yikes!!!!  I swear, some of these drugs they give you side effects sound worse than the condition you are afflicted with...

on Mar 04, 2013

Being on it is fine- it's just getting off it that makes you want to peel your skin off.

on Mar 04, 2013

KarmaGirl
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.

Tried Lyrica and Cymbalta briefly because they rendered no relief within a week. I keep asking the doctor if they've watered down the drugs I did in the sixties...the ones that within an hour you knew you we're doing drugs...or they were doing you...I forget which...lol

I've pretty much gotten to the point where I ask what the side effects are...and if he names more than 2 I don't want them. I recently asked for another prescription of Xanax 1 mg...and it at least works well enough that I can get some sleep without waking up every hour or 2.

Going in soon for another EMG test to see if they can find anything there. Basically my left arm from my finger tips to my shoulder and up to my neck...as well as my left side mid section feels like Popeye's arm looks...and this is constant. On bad days it feels like someone stuck a bicycle pump in my arm and is being pumped up to the point of exploding. And as times goes by I occasionally get new symptoms...if I turn to the left or right..and sometimes just standing in one place for to long...I get these intense muscle cramps that no amount of stretching gets rid of.

The worst thing that sucks...if I lay on my back in just the right position...which unfortunately varies day to day...I "almost" feel normal...until I get up...then it's right back to the same thing.

on Mar 04, 2013

KarmaGirl
I think I was talking to Elvis for a couple days.

Ah, so that was you?  Wondered who was butting in!  Yeah, we had a good conversation going about kissing cousins and hot hula girls getting 'blue' in Hawaii, next thing he's sayin': "Scuse me." and that's the last I heard from him.

As for Effexor, I now take Pristiq, which is next gen Effexor and does the same job for me... minus one annoying side-effect.  When I was taking Effexor I had this problem with jaw clenching and grinding my teeth... which is something you don't need when approaching 60 and yer fangs ain't what they used to be.  Pristiq alleviated that problem for me, however, and I've not noticed any other side-effects with it at all.

I was taking Tramadol but a recent policy change meant there was massive price jump and now I simply can't afford it, not at plus $60 a month.  I need to go back to my doctor to see what else she can prescribe that would relieve pain as effectively.  I can usually manage with the other pain on a lesser med, but I do need something fairly substantial for the spinal pain in the lower back and neck, otherwise there's days I can barely move or walk for the pain.

Although I do not have Lupus itself, I do suffer some of the symptoms you describe, so I will be formulating a better, healthier diet along the lines of your recommendations to see if there are any improvements.  I have an issue with dermatitis, among others I'm hoping will improve if not go away altogether.

on Mar 04, 2013

Starkers, bummer about the Tramadol.  That is one of the few pain meds that work for me without making me feel sick (liver doesn't like many drugs).  Stupid that they won't cover it.  Will they cover levorphanol?  It acts much the same, but you would have to take a higher dose.

on Mar 04, 2013

Oh, I forgot to mention my favorite lotion for chillin' out my skin rashes: Dermarest Eczema Medicated Lotion.  You can get it at a lot of places, or on Amazon for about $12.  It's not super heavy like a lot of them, but it works really well and you can apply it a couple times a day without feeling greasy.  

on Mar 05, 2013

KarmaGirl

Starkers, bummer about the Tramadol.  That is one of the few pain meds that work for me without making me feel sick (liver doesn't like many drugs).  Stupid that they won't cover it.  Will they cover levorphanol?  It acts much the same, but you would have to take a higher dose.

Thanks for the heads up, I'll ask my doctor about leverphanol during my next visit.  I was also told about a pain relief med that applies along the lines of nicotine patches to quit smoking.  Apparently, while it is slow release, you can get an instant hit for severe pain by pressing on it somewhere.  I don't know the name of it as the person who told me has only seen her mother use it, but I'm sure my doctor will know more when I ask her about it.

KarmaGirl
Oh, I forgot to mention my favorite lotion for chillin' out my skin rashes: Dermarest Eczema Medicated Lotion.

I have used that before and recall it being quite good at relieving the itch and burning sensation that comes with dermatitis... and it is available in Australian pharmacies so is easy to get.   A company named Fauldings makes a similar cream that I've also used with good results, so I will look them both up when next at the pharmacy.  I'm currently using a prescription steroid cream that I'd rather not use as it thins the skin, thus making it more fragile and susceptible to breakage, just at the slightest cut, graze or knock.

on Mar 05, 2013

There are a few pain meds that they do through patches.  Nicotine is actually one of them (they apply it post op).  The big on is Morphine.  However, she is most likely using Fentanyl.  It is absorbed into the fat under where it is placed and then slowly releases into the blood stream.  

on Mar 05, 2013

KarmaGirl
However, she is most likely using Fentanyl.

That sort of sounds familiar, though from another source. I know somebody who has similar issues to me and I think he mentioned it to me once.  I have a friend who suffers with chronic lower back pain, and I'm sure that's what he said his doctor prescribed him.  Hmmm, I have quite a bit to talk with my doctor about now, though Morphine isn't something I want to take in its pure form. 

When I was in hospital after my motorcycle accident I had a reaction to it that I'd rather not experience again.  I'm not allergic or anything, but after a couple of days I began to experience some strange sensations and weird, intense dreams, so my doctors switched me to Pethadine, which did the trick.  I've since used some Morphine derivatives without a problem, but I'd still rather not use it in its pure state if I don't have to.

on Mar 05, 2013

WebGizmos
I've pretty much gotten to the point where I ask what the side effects are...and if he names more than 2 I don't want them.

You need to differentiate between potential side/adverse effects (possible), and those you actually experience. You could get hit by a meteor, but have you? To disqualify a possibly good treatment out of hand is self defeating. Once again returning to the problem of prediction. You know you don't react in a predictable manner to all things, but to find out if one will work or not, and how well as well as the actual pluses vs. the actual minuses you have to try the med.

 

Tramadol really is excellent... for some.

 

on Mar 05, 2013

DrJBHL
Tramadol really is excellent... for some.

It was for me... knocked pain on the head... 'til 'policy' put it out of reach, price-wise.

The alternative 'policy' allows is Codalgin Forte... Paracetamol with a touch of Codeine, but I'd rather not use that as it is harsh on the digestive system and causes constipation.... not that the policy makers give a toss about the harm it causes.  As usual, the wealthy get their pick of the good meds while we get the harmful crap in the left overs.

on Mar 05, 2013

Starkers, I am so sorry about the Tramadol. It only ever helped my headaches and nothing else, but I have met a lot of people who swear by it. In the states, there are a few 'generic' versions of it like Ultram that cost half that without insurance and only $9.00 with. Is there not a generic version available there? I may be wrong, I don't know. I just don't understand how they price this stuff at all and why it's always the one that actually works for you is the one you can never afford. Freakin healthcare. It's horseshit wrapped in a riddle wrapped in an enigma and then slathered with more horseshit.

Something that worked for me early on was Avenza (not sure on the spelling). It was a time released, 'synthetic' morphine. Even came along with that warm fuzzy feeling when it kicks in. That was cheap here.