View Full Version : Another step into the world of Lupus

01-07-2012, 03:02 PM
I have tried to write this post for several days but close out before I finish/post it. Somehow writing it down makes it more real.

Those that know me well know that I have always refused pain meds. No matter how badly I hurt (and there are times I hurt very bad) I refused to get on the pain med cycle due to some abuse issues I had in my late teens. Logically I know I can handle them but it has been a risk I refused to take. This week I lost this battle.

I finally had to go on pain meds and muscle relaxants because 40 mg of steroids, plaquennil, MTX and a whole host of other meds just were not cutting it. They fixed most of the Lupus issues but not the pain part. I have been on steroids for so long that my muscles are not as strong and they are pulling and very painful. My joints have been killing me this winter and none of the usually things that I did worked anymore. I know it is wrong but I feel like Lupus won and I hate it. I know that I need them but it was the last control I had over how I am/was handling the disease. The turning point was not only the pain but the fact that between steroids and the pain my mood sucked. I decided I didn't like me anymore and I wasn't being fair to the fabulous daughter that I have by holding out about the pain meds.

I have to be honest, I feel better. I don't hurt has bad which makes life easier to deal with however mentally it is devastating. I know it is silly. I tell people all the time to do whatever it takes to make them feel better. Sadly I just didn't want to take my own advice.

Thanks for letting me vent. Love to you all

01-07-2012, 04:11 PM
I have tried to write this post for several days but close out before I finish/post it. Somehow writing it down makes it more real.

Those that know me well know that I have always refused pain meds. No matter how badly I hurt (and there are times I hurt very bad) I refused to get on the pain med cycle due to some abuse issues I had in my late teens. Logically I know I can handle them but it has been a risk I refused to take. This week I lost this battle.


You have not lost any battle. You have not given in to the cravings of a person battling addiction. You have not sought drugs from your various doctors trying to feed an insatiable need.

You are a woman with a very real group of symptoms that come from real, legitimate, and serious health problems and conditions. You, have done the right thing. There are meds that can help us, that can help you, and you need these meds for legitimate, real reasons.

I know the reasons for feeling the way you are feeling. But, the fact that you are this concerned, that you are this conscious and determined to not repeat mistakes of the past, tells me all I need to know. You have not lost any battle. You won the battle, and indeed the war against addiction, many years ago.


01-07-2012, 04:34 PM
I am so sorry you're feeling that way, and also glad you are getting some relief.

Maybe it's not "giving in" - maybe you just flanked the Lupus and punched it with a new move.... ;)

I really feel the anguish in your post, though. I am - and always have been - very resistant to taking drugs for anything. I struggle even with the Plaquenil....I find that I resent it so much that I often "forget" to take it. I have had some scary symptoms lately that make me think things may be progressing (in a bad way), but it's a real internal battle for me to even make a doctor's appointment about them because I am so afraid that my doctor will say I have to take some other drug.

Like somehow if I "give in", it will mean I am just going to get sicker and sicker, but if I hold out then I am somehow staving it off.

Like each new medical intervention just sinks me deeper and more irreversibly into the morass of A-I disease.

It's not logical or scientifically valid - in fact, I know some interventions will KEEP ME HEALTHIER, but I can't help feeling this way. Like I should hold out as long as I can.....not exactly proactive, is it?


I do hope for you that your fears prove unfounded, that you make your peace with this new situation, and that it restores some health and happiness and normalcy to you. Maybe this is just what your body was calling out for - and you are taking good care of it by providing relief. That is not "giving in", it is good self-care. But I do understand the ambivalence. ((((hugs))))

01-07-2012, 05:28 PM
That was the hardest part of my disease was letting go of the "control" to lupus and im still dealing with that. I understand what you mean by lupus winning, it does feel like it even though its not true. What people forget is that even though we control the symptoms with meds and watching our body, this disease affects us physiologically and most people close to us dont know this. We start by lupus just taking control of our lives and what few control we do have it ends up being taken away and thats hard. I didn't even realize how damaging mentally it was until I joined this site. It is not silly, its part of lupus we eventually have to realize and accept. I found myself, unconsciously, doing things to have some control of my disease. Like the way I take my meds have become OCD, I will only take them out of the bottles in a certain order then line them up in a certain order and take them like that. If I don't do that then I feel off, and i just noticed this last month and it shocked me that I have been doing this for 7 years. Also, I boycott sunscreen, especially if someone reminds me to put it on, I dont know why it doesn't take any energy to put on and I know I need to put it on and it's silly but again its the bit of control I have left. I bet if you look closer to your life that you will notice little things like that to "Stick it to the disease", even how little and silly they are. Just know your not alone in how your feeling.

01-07-2012, 08:19 PM
I understand about avoiding the pain pills. I over-react to any narcotic drugs and sleep far longer than I'm supposed to. I really don't like the way that they cause me to feel that I've lost all control over my body and my life.
Like you, I struggle along without pain medication - just the occasional Aleve.
I hope that the new meds work for you, not against you, and help you to enjoy life a bit more.

01-07-2012, 08:19 PM
Thank you all. It's not really that I worry about becoming addicted again. It is simply that it was my "rule". I take 12 different medicines every day and after my plaquenil "issue" I make sure to take them all. I know I have to take my meds now or the disease will get worse.

It is about control and not being a baby. Lupus took my job, my car, my ability to drive and on and on. Although it was hard I was able to adjust to this new world of mine without living in a state of depression, I have so much to be thankful for but dang it no pain meds!I am tougher than that. I am stronger than that. I (fill in the blank) than than that. For me (and this is just for me. I don't judge anyone else's path) pain meds were optional where seizure meds, plaquenil, steroids and such were not. I guess I just hit the point where they were no longer optional. Hopefully they are only short term and will help me until I get out of this flare that seems to never end.

Thanks to all of you for letting me whine. I try not to do it often but I needed a place that understood.

01-07-2012, 08:26 PM
( ( ( H U G S ) ) )

i wish you some stability.
may the option present its self again.

01-09-2012, 11:38 AM
You are doing what you need to do to feel better, I hope your pain is less

01-09-2012, 09:47 PM
I'm sorry that you're having to take pain meds to control your pain, Mari-not because you've somehow failed, but because your pain has escalated to the point that Aleve or Advil will no longer resolve it.

I understand your thought process....losing so much to SLE job, car, ability to drive, health insurance, etc. You conquered a demon in your youth and taking pain meds is like giving in to your worst nightmare.

I commend you for facing your fear and doing what's best for your health and well-being long term.

01-13-2012, 02:47 AM
I struggle to manage without pain relief, I take Panadol Osteo and Mersyndol night strength - that is the only stuff I can tolerate. The chemist tells me Mersyndol is habit forming, but pain relief in itself is habit forming in the sense that you dont take it, you get the pain and who wants that? People that have been on Plaquenil for years, are often ill if they stop it as they get so much benefit from it.

Everything we take in its own way is habit forming - I dont mean addictive, but we take medicine to help us, improve our quality of life and there is no shame in that.

You did the right thing for your body, it cannot function when in pain, your quality of life is reduced hugely, by taking pain relief you have done the best thing you could have done to enable you to enjoy your life and one without pain. If a vet prescribed your dog/cat pain relief for arthritis, you would not hesitate in treating it.

You deserve a life without pain and if you have to take pain relief in order to achieve that, then that is how it has to be but to suffer pain is not good for you - mentally or physically.

You should be proud of yourself for accepting this and taking this step to help yourself.

01-15-2012, 08:50 PM
This week I lost this battle.

No you haven't. You must have won the battle, else you wouldn't have even considered the pain meds bearing in mind your past.

You know what you're doing and you need to believe that you are in control. The minute you tell yourself that you aren't in control, well thats when you lose...you lose to the lupus and you lose to the meds.

I can relate to the feeling though. For example, I repeatedly hate myself for having to take meds for Bipolar Disorder. Hey, it's my mind, why can't I sort it out myself? Who would be so stupid as to have to take medication for a "mood disorder." Surely I just need to cheer the feck up and chill the feck out in equal measure, like everyone else manages to do Etc etc.

But taking the meds is me taking control...I will not let it ruin my life. That would be letting it win.

Much love xx