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Pain level question

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Lupus
What is your daily pain on scale of 1-10?
none - 0.0% - 0 votes
1-3 - 28.6% - 2 votes
4-6 - 57.1% - 4 votes
7-8 - 14.3% - 1 votes
9-10 - 0.0% - 0 votes
Off the scale! - 0.0% - 0 votes
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Posted 3/18/2012 2:31 AM (GMT 0)
I'm very new to lupus. I'm trying to figure out if pain is the norm of daily living.

I take 15mg of mobic a day and tramdol as needed (1-3 tablets a day). Some days even after the pain killers I still hurt on some level.

An average level for me on a scale of 1-10 is a 3, which is tolerable for me. Some days it gets up to an 8. Those days I basically stay in my recliner. I try to stay still because moving is a nightmare. I take the maximum amount of Tramadol I'm allowed. skull skull

Is this a normal thing? confused   If it is then, I'll try to get used to it and deal with the very bad days as needed.

How do you deal with your pain and how bad does it get for you on a daily bases?

Posted 3/18/2012 4:07 AM (GMT 0)
Hi Joy,

I have been diagnosed for about 6 years now. I can honestly say that there really isn't any day that goes by that I don't have some sort of pain. I always feel like something is wrong with me. I take Mobic and Tramadol also.
I just recently took short term disability from work. I have gotten to the point where my absences from work were hindering my job. (I worked in a school as a supervisor). It was hard for me to do but I feel so much better being able to stay in bed or at least my recliner and not feel guilty because I didn't go to work again.
I know that some people have good control over their pain and fatigue. I just happen to be one that doesn't. I have learned to just take it one day at a time and not commit to doing to many things at the same time.
I hope this helps you.

Mary Ann
Posted 3/18/2012 4:43 AM (GMT 0)
It varies so much for me. I rarely feel good, but I would say an average day for me is a 3. Some days it gets up to a 6 or 7, other days I may not have any pain at all, just fatigue.
Posted 3/18/2012 2:14 PM (GMT 0)
Hi Joy,

I am sorry you are having so much pain. My pain varies but I would say that it stays between 4-6. I take Tylenal (allergic to most of the typical pain meds) and when I feel like I have hit the wall (or others tell me that I'm starting to be mean, lol) then I break down and take a vicodin. The vicodin lessens the pain but I do not like the side effects (really does a number on my brain and stomach) so I limit myself to 1-2 pills a week. At the moment I am on pred burst and I am amazed at how much it lessened the pain. I was having a lot of inflamation in my lungs and my oxygen level dropped. The pred cleared it up quickly and I forgot how good it feels! Unfortunately today is day 1 of the taper. Boo!
Yes, I have had lupus (diagnosed) for 10 years and the pain is always there - but it does vary from day to day. Hope you feel better, soon!
Posted 3/18/2012 8:50 PM (GMT 0)
I just returned from a visit with our kids and it involved a lot of car travel, guest room beds, and not very comfy hotel beds, (we traveled with our dog this time, so the pet friendly hotels had to do), sun exposure, cat exposure (I'm allergic)  and just all around extra energy expended.  Day 4 - I crashed.  Fortunately, my rheumy permits me to take some Prednisone when this happens, and I remembered to bring it.  Not sure how I would have managed the remainder of the time without it.  

I'm with you, Fran - taking the pred is transforming!  It gave me some of myself back, and I loved the energy that came with it.  It didn't get rid of all the pain, but it whipped it back into the cage, so to speak.  Of course, what goes up must come down.  I have felt extra miserable for the past 4-5 days coming off, and I'm quite sure I wasn't a lot of fun to be around, either.  I have osteoporosis, so it's not something I can do often.  But that was when my "vacation" started - once the Pred kicked in.  Up until that time it was more like an endurance marathon - one you have to keep smiling for.

Anyway - it reminded me of how hard it is to keep up with "normal" people.  And how much longer it takes me to "recover" from things that don't phase "normal" folks, and how, really, nobody can truly understand it unless they have a personal experience that gives perspective. 

I also have pain everyday, and always feel as though something is wrong with me.  Management and coping of pain and fatigue and malaise is a daily and ongoing chore and requires limiting activities.  Some days talking on the phone is simply too demanding.   When it effects my sleep - things get worse.  When I'm able to sleep enough and well, it generally improves.  So much depends on what's going on physically, stress levels, weather, yada yada.  So many variables.

I had hoped that Plaquenil would have had a larger impact on feeling "normal".  I take Advil and Tramadol to counter pain - though I don't like taking either.  Once in awhile I'll have a really good day with a 2-3 pain level - but regularly, I'm a 4-5.  Activity - even the fun kind, especially upper body, ramps it up. 

I hope you start feeling better soon.

Lucy

   

Posted 3/18/2012 9:12 PM (GMT 0)
I wish people would realize just how much pain we deal with on a daily bases. My niece is constantly telling me how grumpy and mean I get. When you work from 7am to 5pm with 16 very active 7 yr olds like I do, and have to force myself to smile and be pleasant during my worst days, I guess I have a right to get grumpy at home.
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