Living with Lupus part 2

What I do to keep healthy

By on March 1, 2013 11:18:03 AM from JoeUser Forums JoeUser Forums

KarmaGirl

Join Date 03/2001
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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! 

 

 

 

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March 1, 2013 11:22:50 AM from Stardock Forums Stardock Forums

Crap- I forgot to mention alcohol in this.  I guess it's simple- don't drink any.  It's poison that your liver has to deal with.  So, stop it!

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March 1, 2013 11:40:34 AM from WinCustomize Forums WinCustomize Forums

do you take an iron supplement with no meat?..... or calcium?

with the sleep apnea, do you use a CPAP machine, or can't you with the nosebleeds...  the machines work wonders with people I know on them...

have you considered medical marijuana?... I just did a search and people have found it helpful with Lupus to cut down on the pain management drugs...

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March 1, 2013 11:47:13 AM from WinCustomize Forums WinCustomize Forums

Exercise:  If you use a heated pool for part/all of your exercise, and yoga for joint flexibility, it might help considerably... More power to you! Btw, if you're using a CPAP machine, make sure it's calibrated (frequently) and the tubing cleaned (frequently) and that it's humidified!

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March 1, 2013 12:34:42 PM from WinCustomize Forums WinCustomize Forums

i just started a new full hardcore life style change this week, no sugar, no dairy, no white flour, no soda, no diet soda, no alcohol (never drank it anyway)

 its been one HELL of a week to cut out all of those things (as i consumed them in huge portions...)

but im allowed to eat as many vegies as i want, and am now drinking water, and soda water for the first time in my life.

and im doing Diamond Dallas Page Yoga.

My muscles have been screaming and aching all week, and detox has been hell (i dont think it will be over for a long time yet) but the payoff has been

HUGE, ive already lost 3kg and it hasnt even been a week...

 

so i agree with you 200% dont eat crap. and MOVE you ass if you want to live.

ps the vaporized niccotine sounds awsome (but hey, im bias, im a smoker)

the only disappointing thing i have discovered is.. is that sugar is in EVERYTHING.... its rediculous.

 

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March 1, 2013 12:54:27 PM from Stardock Forums Stardock Forums

Sydny, there are plenty of plants (veggies) that have iron and calcium in them.  I've never been deficient in either.  I have had a vitaminD issue, but that is parathyroid related.  I have a CPAP machine, but I take it off in my sleep without knowing it, so I'm not sure how long it stays on my face.  I'm either an insomniac or I sleep the sleep of the dead.  I have mixed feelings about medical marijuana.  I'm not against it, but I'm not sure I would want it around my teen daughter.

 

The CPAP machine has been a real trip.  I've been to several sleep studies and been through a bunch of differnt masks.  It does have a humidifier, and I have lightweight tubes for it, but I still pull it off in my sleep.  I wake up in the morning to the hiss of air coming from the mask that is now on the floor.  Stupid sleep issues.

 

Vampothika, have you ever tried nicotine vapor?  Might help with your healthy lifestyle.  It's easier on your lungs, doesn't have tar, and isn't cancer causing.  You also can get it in different flavors, and you don't smell when using it.

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March 1, 2013 1:06:21 PM from WinCustomize Forums WinCustomize Forums

Quoting KarmaGirl,
Vampothika, have you ever tried nicotine vapor? Might help with your healthy lifestyle. It's easier on your lungs, doesn't have tar, and isn't cancer causing. You also can get it in different flavors, and you don't smell when using it.

would that be the same as the electronic cigs??? i actually like those....  i smoke rolling tobacco... i guess its more natural than shop cigs....

ps i love you!!!

 

pps.. actually i just went out for a cig and i announced to neone6 (who i live with in sweden now ) "Well, karma girl said that they have proved that niccotine

dosent cause cancer, so im going outside to enjoy my cig!"  neone6 (Andy) had a good LOL over that.!!

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March 1, 2013 2:11:52 PM from Stardock Forums Stardock Forums

My quote button doesn't work......

Yeah, eCigs are the same technology.  Now, I didn't say that tobacco doesn't cause cancer, just Nicotine, LOL.  I prefer either fruit flavored nicotine or crisp cola (which tastes like vaporized cola candy).

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March 1, 2013 2:32:25 PM from WinCustomize Forums WinCustomize Forums

Quoting KarmaGirl,
Yeah, eCigs are the same technology. Now, I didn't say that tobacco doesn't cause cancer, just Nicotine, LOL. I prefer either fruit flavored nicotine or crisp cola (which tastes like vaporized cola candy).

hahaha cool shit Ang..... man, i just tried coconut milk in my tea... i wouldnt recommend it...

do you drink almond milk or rice milk or anything like that?  im seriously considering trying almond milk.

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March 1, 2013 4:21:35 PM from Stardock Forums Stardock Forums

Coconut milk is only good for making ice cream, LOL

I like Almond Milk for cereal and sweetener soy for most everything.  Very vanilla soy milk is awesome in coffee.  Almond milk retains its almond taste, so it is kick-ass is baked goods, like muffins.

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March 1, 2013 9:53:10 PM from WinCustomize Forums WinCustomize Forums

Quoting KarmaGirl,
I've never been deficient in either.

that's good... some women need a lot of iron and don't manage to eat enough vegies to meet the requirement...

 

Quoting KarmaGirl,
I still pull it off in my sleep

that's a pain...  seen this one?...one especially for women... no forehead support to annoy and very lightweight....  link...

 

Quoting KarmaGirl,
I'm not sure I would want it around my teen daughter

it's not like you'd be leaving 'the bong and bowl' out on the coffee table..       but, maybe something to keep in mind to try at some time in the future then... 

 

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March 1, 2013 10:49:06 PM from WinCustomize Forums WinCustomize Forums

Quoting Vampothika,
i just started a new full hardcore life style change this week

go kitty...  

I did the same thing 3/4 weeks ago... drinking 2 litres of water a day..... which doesn't really leave room for tea and coffee... so haven't had any...

if the tap water's not too sweet over there... buy some bulk spring water... you'll drink more of it if it tastes nice and pure... and really... with what you save on sodas... you'll still come out ahead.... try a fine slice of lemon in the water for a bit of a change sometimes...

2 pieces of fruit a day... which has happily taken care of sugar cravings... which is quite surprising as....I do love my chocolate... 

 

glad you're not thinking of 'diet' sodas too... a new report out a coupla weeks ago said they were just as insidious as the sugar sodas.... they send a message to the brain that you've had your glucose hit... but as your energy levels don't match the 'hit'.... the brain tells you you need to have more... so they are actually finding diet drinks increase your sugar cravings...

if you're wishing to lose weight.... restrict to about half a cup a day... potato/sweet potato/rice/corn/peas and the like..... but eat as many of the rest as you want... along with 125 gm of protein (about the size of your hand).... meat/fish/poultry...  trim fat..  no crispy chicken skin...  

A slice of rye or multigrain or spelt grain bread with a topping like... Philly cheese/cottage cheese and tomato with chopped basil...makes a nice fill in snack...

I like to crumble a little fetta over things like boilded broccoli and zuccinis for a bit of a flavour hit...instead of...butter  ()...  makes it a bit more interesting...

a low fat, low/no sugar fruit yogurt makes for a nice li'l dessert at the end of the day... and a little calcium fix...unless you have allergies... still keeping a bit of dairy in there is a good thing...

yoga is great...  I have a gym membership but time and lack of interest means I don't get there often... but I have been doing a couple of programs from youtube which I must say have had a swift effect strengthening me in a short time... links below if ya wanna take a look at them... they're fairly low impact and don't take long... good to get yourself a couple of 1.5kl / 3-4 lb dumbbells to push things along...

link

link

good to mix the exercise up a bit... if your making muscle... you're automatically burning calories...

also... eating small amounts all day at 3 hour intervals, helps keep your metabolism burning calories.... even if it's half a piece of fruit... just something... handful of nuts... etc... space your food out...

 

good luck with the 'lifestyle change'... I've had 6 kilos just drop off already... so, shows you how the bad habits we get into set us back... and can so easily be turned around... the crunch is... keeping it interesting and maintaining those habits so that it remains a 'permanent lifestyle change'... I'm pretty positive about that so far... given how much better I feel, and how easy it's been... 

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March 2, 2013 3:27:21 AM from WinCustomize Forums WinCustomize Forums

Quoting KarmaGirl,

Coconut milk is only good for making ice cream, LOL

I like Almond Milk for cereal and sweetener soy for most everything.  Very vanilla soy milk is awesome in coffee.  Almond milk retains its almond taste, so it is kick-ass is baked goods, like muffins.

those ideas sound really good! ive never tried anything non dairy, so im pretty lost...

Syd... wow.. insane info there I will check out those links!, and pretty much on track on what im doing. (cept for the dairy stuff,, just a no no for me atm) i dont have any allergies.

so im lucky in that sense... Bravo on dropping 6kg!!!! you must be smoking now or what?? heheh..

  and yeah.. its so easy to just slip back into the old lifestyle but it catches up before you know it.

 

Angie... if you dont post a coconut cream ice cream recipe there will be concequences...

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March 2, 2013 8:28:55 AM from WinCustomize Forums WinCustomize Forums

I read both parts. Just...WOW. I don't have Lupus. (I have been tested twice and get what they call a 'false positive' and I don't understand at all their explanation of wtf that means...only that I have it, but I don't, and I do, but not really...)  A good bit of my own issue is we aren't quite sure wtf i DO have but are overly aware of all the symptoms etc. Most of those symptoms being pain. My mother had lupus. We never talked about it. I knew it was painful for her. We couldn't hug or touch the last few years she was alive.

I don't know how you 'do what you do'. I think if my mother had been able to keep working (disclosure- she had a few other issues as well with her health) she might have fared better. She was always strong and a fighter. She raised my sister and I on her own in a time where women were lucky to pull in 200 bucks a week for being the best in the office pool, you know, but we never wanted for anything.

I am not as strong as my mother. Or as you. I have thought of writing something similar to what you have just to try and minimize the whining I do on FB or anywhere. (One of my main reasons for not posting much at all anymore AND i am NOT saying you are whining by any means)

Though my pain has increased significantly just in the past three weeks it's the depression that has taken over and started to rule my life. I argue with the doctors about it. 'Get rid of the f-ing pain and the depression will follow...' etc. Right now, I am on a waiting list for approval for a spinal cord simulator but that will only handle the pain from the waist down if I understand it.

Posts like yours help. Though I don't have lupus, there are some similarities that i can see and find some odd if not weird comfort in knowing that I am not alone...yet feel so bad for you at the same time and wish you didn't have to go through all the trials that you do because of it...if any of that makes sense.

I have been unable to work for over a year now. I would give anything...deep breath here...chewing my cheek.. I really would give anything to be able to work or have the strength to ignore the pain and do SOMEthing. Right now, I would be the happiest person on here if I could just run the fry baskets at Burger King. My wife has been carrying our family all this time. I can't even drive because of all the pain medicines. I could sit at a desk for periods of time, operate a PC a phone..but I can't pass the company drug test. HA! I have applied (and am waiting) for disability but I would rather work, like I said, doing anything.

We have had the lights, water, cable all shut off more than a few times in the last year. My wife, I know she feels like the weight of the world is one her shoulders and I can't do sh**. Her family helps when they can, but times are hard for everyone these days. 

There are folks here, on this site..YOU know who you are..I just want to say Thank You. Thank you for making sure my daughter got to celebrate Christmas  and have another year of believing in Santa Clause and the spirit of Christmas. Thank you., from my heart. And for my other angel who gave me back my connection to all of you and FB and stuff, thank YOU. I'm sorry I don't post much and after this mess, probably won't again for a while, but I am here, around, reading, downloading, thinking, laughing, smiling...

I'm not trying to hijack your post. Just wanted to say 'Thank you' for posting, KarmaGirl. Sincerely. I don't know if I will start my own journal or not, but reading yours has helped me put somethings back into perspective if nothing else, and I need that once in a while.

So, with that..carry on. I'm just gonna sit back and catch my breath.

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March 2, 2013 8:50:34 AM from WinCustomize Forums WinCustomize Forums

I'm so sorry to hear of your woes, Po'...... I was aware of many of your medical probs from previous threads...... but I thought you were away from WC, time deprived with that job you had doing all the travel..... I didn't realise... 

that's a real bugger.... I hope the spinal cord simulator makes a huge difference for you...  fingers crossed...  

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March 2, 2013 9:32:19 AM from WinCustomize Forums WinCustomize Forums

@Po' -

I'll try to explain and hope you understand a very complex topic explained in a minimum of words.

The test they gave you was *probably* an ANA (Antinuclear Antibody) and is "sensitive". What this means is that it's very good at detecting those antibodies, but the presence of those antibodies ALONE does not mean you have one specific (or any) disease ("specificity").

Sensitivity (also called the true positive rate, measures the proportion of actual positives which are correctly identified as such (e.g. the percentage of sick people who are correctly identified as having the condition). For Lupus, it's about 93%.

Specificity measures the proportion of negatives which are correctly identified as such (e.g. the percentage of healthy people who are correctly identified as not having the condition, sometimes called the true negative rate). The ANA test, unfortunately, has a specificity of about 83%.

This might help:  http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/ana.asp

 

It only means you have those antibodies at a certain level. The level considered positive is 1:80 (1:160, 1:320, 1:640, 1:1,280, etc. are more positive [higher antibody levels] because the test is done at sequential dilutions).

Many 'normal' people have positive ANA's. A complete auto-antibody profile can be ordered and if the other tests are negative, you probably do not have a disease like Lupus. You could, however, have an enthesopathy (like Reiter's Syndrome or Psoriasis). Or not. That's where the symptoms and findings on examination and other imaging/biopsies come in.

What I'm trying to say is that the one test, taken by itself, is not diagnostic of anything. There is no "Delphian Oracle". I only wish there were. Also, having one problem (or disease) doesn't mean you don't have others as well, or not. Thus, one set of symptoms might belong to one disease while others belong to another. To complicate it further, there are overlap syndromes.

I hope that makes some sense for you.

I'm so glad Journey had a Christmas. I wish your life were better and that you were suffering less. That is from my heart.

My "Thank you" to Po's angels, and to all the angels out there. Sincerest blessings to you all.

 

 

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March 2, 2013 7:29:10 PM from WinCustomize Forums WinCustomize Forums

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

 

Lots of love.   HG.

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March 3, 2013 12:03:52 AM from Stardock Forums Stardock Forums

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)

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March 3, 2013 1:36:04 AM from WinCustomize Forums WinCustomize Forums

Quoting 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 ....

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March 3, 2013 5:34:26 AM from WinCustomize Forums WinCustomize Forums

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.

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March 3, 2013 6:41:15 AM from WinCustomize Forums WinCustomize Forums

Quoting Jafo,
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.

 

 

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March 3, 2013 7:53:43 AM from WinCustomize Forums WinCustomize Forums

Quoting 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. 

Quoting 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.

Quoting 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..

Quoting 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. 

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March 3, 2013 8:43:17 AM from WinCustomize Forums WinCustomize Forums

Quoting 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.

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March 3, 2013 9:57:51 AM from WinCustomize Forums WinCustomize Forums

Quoting 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.

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March 3, 2013 11:42:03 AM from Stardock Forums Stardock Forums

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.

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March 3, 2013 11:56:54 AM from WinCustomize Forums WinCustomize Forums

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

Quoting 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.

 

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