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AAH21
New Member


Date Joined Jun 2012
Total Posts : 4
   Posted 6/17/2012 9:37 AM (GMT -6)   
Hello All,

I just discovered this web site this morning at the recommendation of a nurse at my doctor's office. I was diagnosed with Lupus about 3 years ago and Fibromyalgia in September of 2011. I did not realize the effect these diseases would have on me both mentally and physically.

I saw my doctor in the beginning of June and he told me he wanted to do a "steroid trial". He said it would help him determine how to treat me. He also said if my symptoms went away while on the steroids then he would treat me one way; and if my symptoms continued while on the drug, he would treat me another way. I took prednisone 10mg for 10 days. Yesterday was my first day of being off of them.

I can not explain enough how much the time during this trial has changed my life. I felt like I was 25 years old again (I turn 35 in a few days). I had a ton of energy, very little pain, slept well, didn't gain any weight (actually lost a pound), didn't have any face swelling, I stopped being an emotional wreck, and overall just felt the most "normal" I have felt in 10 years. I was even able to cut my grass (after the sun went down) and work in the yard one morning with no ill effects other than a very regular feeling of soreness.

(I was a college soccer player at the Division I level, so I know the difference between a "good" sore from working out and a "strange" sore/pain from doing nothing at all.)

I only had 2 symptoms/negative physical feelings that stayed with me while on this trial. Please understand these symptoms were here well before the trial began.


1. My hands were still in constant pain. I can not do anything meticioulous with my fingers. Holding a pen or holding two sheets of paper in either hand has now become a challenge.

2. My left leg (from the knee down) stayed swollen.

Other than these 2 problems, as I mentioned before, I felt AWESOME.

I am on a pain medicine regimen of 3 Vicodin/day and continued this while on the trial. I also take Effexor and Klonipin daily due to a depression/anxiety disorder that I was diagnosed with when I was 18 years old. Finally, I take tizandine at night to sleep with out muscle cramps.

I have a few fears/questions where I would appreciate some feedback. They are listed below.

1. How quickly is this prednisone going to wear off? Yesterday was my first day off the steroid and I felt no ill effects yesterday; however, I woke up this morning and I feel as if an "attack" is coming on. I am tired and I just feel as if my body is about to give out.

2. Before this trial began, I went through about 2 weeks of what I would call "emotional distress". I cried pretty much every day about nothing in particular. I'm not just talking about a few tears, I would say it was a complete breakdown. Crying like a baby. I am not a cryer. I probably cry about once a year if that. I just never get that emotional. I get upset; but never to the point of crying uncontrollably. I am extremely afraid these feelings are going to come back. I really don't even know what the feelings were that led to my breakdowns, but I know I don't want to get that way again.

3. I would love some advice on continuing my relationship with my spouse. Before the trial but in the last year I have felt us drifting apart. I know this is because of my illness. She is extremely understanding; but I don't feel anyone can understand this type of pain unless they are going through it themselves. My rationale of her not understanding this type of pain is because she has questioned me about my use of pain medicine. She thinks I take too much. In my mind, I could take a lot more because the pain I feel doesn't get too much better when I take it. The Vicodin does not make me tired, cranky or any negative feeling I can feel is related. If anything, it makes the pain a little more tolerable. (I will admit to taking a lot of pain medicine, all prescribed, during my college playing days; so I know I have a very high tolerance for pain medication. Sometimes I wish it wasn't so high.) I would just like some advice on how to get her to understand the pain both physically and mentally. I hate staying inside (avoiding the sun). I spent my whole life outdoors and constantly active and now I can't do 1/8 of what I use to do. Sometimes I feel like a puppy looking out the window, just wanting to go outside and play, but I can't. She loves to be outside and be active and I would never in a million years want to limit her enjoyment of life because I am not able to participate. But, she always says she doesn't want to leave me home and go places without me. I have mixed feelings about this answer. I do not want her to resent me ever; but I also enjoy her company and, if I am forced to stay inside (or home to rest and build up energy), I would like for her to be with me. She said she vowed to be with me for better or worse and she meant it. I am not fearful of her leaving me; but I do not feel it is fair to her to change her life to be with me. What is the best way for me to help her understand how I feel?

4. What do you do to build/save up energy? When I do try to do the simplest of things (go to the mall, grocery shopping, catch an indoor ball game) I just get wiped out. It is all I can do to go to work all week. I had to get out of Division I college soccer coaching (a job I had for 14 years) due to my diagnosis; however, I was very lucky to get a job in administration. It is an inside job only 40 hours a week as opposed to endless hours of coaching games, recruiting, program planning, etc.. I loved my coaching job, but I know this is the best change for me. I still get to work with athletes to better their lives, but I don't have the stress and the sun exposure I did have before. I also do not work weekends anymore. Still, with the job change, by Friday, I am exhausted and it takes me almost the whole weekend to recover. I do not want to live to work, so how can I get/build my energy level up. As it is I go to bed by 9:00pm and wake up at 6:00am.

5. Finally, and probably my most important questions: What are the results of this trial going to tell my doctor? How do you think he is going to treat me with medicine? Is the medicine going to continue to make me feel as I have the past 10 days? I pray it does; because I just don't know what I will do if/when I go back to feeling the way I did before.

I appreciate all of you who read this post and have any suggestions/answers for me. Right now I can't get the song "Live Like You Were Dying" out of my head. I am so scared of how I am going to feel when these steroids wear off that I am doing absolutely everything I can do right now before I start feeling like I did before the trial. All I can hope is that it does not come to that and that from this trial my doctor will better understand how to treat me. I also hope that I can continue to feel as great as I have the past 10 days. I hope I am not being unrealistic hoping that there is a solution to continue to feel this good. I will deal with the hand pain and leg swelling to feel as wonderful as I have during this trial.

Again thank all of you. I really like this website and I am really looking forward to hearing all of the responses.
AAH21
lupus and fibromyalgia

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 6/17/2012 10:54 AM (GMT -6)   
Your story is very much like mine -- let me try to quickly respond...

1. How quickly is this prednisone going to wear off?

The prednisone is a steroidal anti-inflammatory. It "wears off" rather quickly. 10 mg is a fairly low dose -- the body in a normal state produces (from the adrenal glands) 5-7 mg of a similar substance. (If you were diagnosed 3 years ago, have you been getting *any* treatment since then?)

2. Before this trial began, I went through about 2 weeks of what I would call "emotional distress". ... I really don't even know what the feelings were that led to my breakdowns, but I know I don't want to get that way again.

Periods of emotional overload are also very rare for me -- I have had some similar episodes -- unable to tell if they are associated with Lupus itself, exhaustion from "acting ok" when feeling like crap, relief from finally getting a dx, or whatever.

3. I would love some advice on continuing my relationship with my spouse. What is the best way for me to help her understand how I feel?

You might try giving her a copy of "The Spoon Thoery" -- It helps explain how we feel when we still look healthy. www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ Plus remember to stay in your own head and not "read her mind". If she says leaving isn't an issue, trust her.

4. What do you do to build/save up energy?

Do things in smaller and smaller bursts until you find what amount of energy you can expend without "burning out". For me, at this point in my illness (dx 2002) I am limited to 1 big event per day. If I go to the grocery store, it's the day's event. Part of this is physical but another part is stress. Lupus will create a lot of stress around things that were never, ever a tiny bit of stress previously!

5. What are the results of this trial going to tell my doctor? How do you think he is going to treat me with medicine? Is the medicine going to continue to make me feel as I have the past 10 days?

The trial is probably being used to determine if your pain is from Lupus or from Fibromyalgia – Lupus usually is better w/prednisone, Fibro often the same or worse. Is he a rheumatologist? He’ll probably decide Lupus – a baseline med is Plaquenil, an anti-malarial known to help control Lupus progression. Another med is the Prednisone, used to control the Lupus inflammation. (I was on pred for over 7 years, still on Plaq and may always be, so don’t expect a quick magic solution.) You may be treated with Imuran, Cellcept, or MTX if Prednisone can’t get things under control. Each person responds differently to these, it is trial-n-error which of these 3 might help you. Whether you continue to feel as good is totally unpredictable – Lupus is the disease of 10000 faces, and doesn’t respond the same to anyone.

Hope things continue upward!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

AAH21
New Member


Date Joined Jun 2012
Total Posts : 4
   Posted 6/17/2012 11:39 AM (GMT -6)   
Lynnwood,

Thank you for your feedback. Since my diagnosis, I have been prescribed tramadol, Lyrica(made me exhausted all the time; I couldn't even get out of bed) and Gabapentin(which made me swell up like a balloon causing more pain). Since then, I have recently changed doctors to a more well known and respected doctor in the community. During my second visit, he decided to do this trial.

Again, thank you for your advice and answers. It is great to have found this site!
AAH21
lupus and fibromyalgia

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 6/17/2012 1:56 PM (GMT -6)   
Is this Dr a rheumotologist? If you've ever had a positive ANA, a rheumy is your best bet.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

AAH21
New Member


Date Joined Jun 2012
Total Posts : 4
   Posted 6/17/2012 2:09 PM (GMT -6)   
Lynnwood,

Yes I have had several positive ANA tests and experienced a stint in the hospital with kidney my kidneys beginning to fail due to extreme dehydration issues. My doctor is a rheumatologist. He was recommended by a co-worker of mine and also a pharmist that is a friend of mine. He is wonderful. He tells me "I treat my patients, not their blood work". My fear with the doc was that he would not believe me about my pain because I have no visible symptoms except swelling. He has taken a lot of time to explain things to me and really listens to what I have to say. I am very lucky to have him as he was/is not taking new patients. My friend had to pull some strings to get me into his office. But after the last rheumatologist I had made me so mad (only wanting to treat with pain meds) I had to switch.
AAH21
lupus and fibromyalgia

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 6/17/2012 3:02 PM (GMT -6)   
Sounds like a good move -- I'd asked because the most important part of addressing these issue seems to be finding the right doctor!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde
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