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Posted 8/13/2009 12:58 AM (GMT 0)
It seems lately, that I am in constant flare mode.  I'm feeling like I'm about to crash, just crashed, or just might be coming out of crash.  I can't get more than 1-3 days of "relative" well-being - meaning I might get to the grocery, manage a few chores, get a short walk in - but nothing more, and certainly no traveling or strenuous things like actual gardening (which I miss like crazy).   I have to limit my activities so much, and it just doesn't seem to help that much.  Maybe the Plaquenil isn't working? 

I saw my GP today and he Rx'd Tramadol for pain.  I don't do well w/ meds and I don't know if I'll be brave enough to try it.  My joints and muscles have been very unhappy for so long now.  I felt so much better on Plaquenil for the first couple of months.  Then I went into big stress flare, drug flare (Lipitor) and finally a reaction to the mega dose of Vit D, and I can't seem to get back to that place of feeling like things were improving and I might, just might, get a good sized portion of my life back. 

I know others are really dealing with difficult situations much worse than mine - so I'm sorry for complaining.  I just don't know what to expect or what to do at this point.  I hate the thought that this is just the way life is going to be .....

Blechh....Do you all know what I'm talking about - feel similarly?  How do you handle it?

Thanks for listening....

Lucy

Posted 8/13/2009 2:27 AM (GMT 0)
Lucy,

I would ask your rheumatologist about something you can take in addition to plaquenil. Have you discussed this with him or her? I'm not talking about your gp. If you aren't seeing a rheumy, you should be.

Keep seeking till you find the answers. I hope you find something that helps.

Pat
Posted 8/13/2009 5:03 PM (GMT 0)

Thanks, Pat.  I do have a rheumatologist, and the last time I saw her I asked if there was something topical I could take for the pain.  She rx'd lidocaine patches.  I haven't filled that prescription.  She said it was very expensive and some insurances don't cover it.

My rheumy knows I am very sensitive to drugs most other people can take with no problem.  I think she is avoiding Pred because I have osteoporosis and very low Vit D - which I am trying to get up to a higher level so I can be started on Fosamax.  The appt. with my GP was a follow/up and just happened to coincide with a flare that has involved considerable pain.

I go back to the rheumy (actually, her P.A.) in a couple weeks.  I will ask more specific questions and try to be more specific about my symptoms.   My GP tends to think the fibro is acting up.  I just don't know what to think.  

Lucy

Posted 8/13/2009 6:30 PM (GMT 0)
Hey there Lucy,

Gosh it sure sounds like both your body and mind frame are in a deep slump.  I know how it is with just wanting to have a few days of feeling good.  It's such a tricky disease and just when I think I am on the right path I will wake up one day and feel like I was hit by a truck and can't figure out what I even did to bring it on.  I just saw my rheumatologist this week though and all my reports are coming back good.  I have been on the plaquenil since March and I think it is now finally starting to get things under control.  It works differently for everyone.  I know that I've noticed that since I keep alot of water on board and have been plugging the fish oil and flax seed oil to help with the joints, I've been feeling a difference as well.  Sleep is always the key too.  Are you getting enough rest.  We just went on a long road trip (first time since my diagnosis in March) and I realize I can't do things like that anymore.  It totally wiped me out and I felt ill the majority of the time due to lack of sleep and too much riding in the car.  It really stinks that we can't do the many things in life that brought us enjoyment before, but keeping a positive frame of mind is a big part of how you feel every day.  Getting depressed can really affect your body both emotionally and physically so whenever I start to go there I start to think about what is important and that it could be worse.  Hang in there, I'm sure you will have better days ahead once you figure out the medication path that works for you.

Feeling good again,

Lynnette

DX - lupus and carpal tunnel snydrome

RX - plaquenil, folic acid, prednisone, some anti-inflammatories,  lisiniprol, fish oil, flax seed oil, vitamins and lots of water!!!

Posted 8/13/2009 10:58 PM (GMT 0)
Hey Lucy, one way to find out if it's your lupus or Fibro is to have a full body bone scan done.  I had to do this because we just couldn't tell what was causing my pain.  The bone scan was SO COOL!  Not a single joint "lit up" on the scan which meant that it was my Fibro causing the joint pain (muscles, tendons, ligaments).  Nothing going on with my bones and joints. It might be an option worth considering.

How do I handle all this crap?  It manifests itself as anxiety and panic.  I don't manage it well.  I'm seeing a psych right now and hopefully it will help.  I wish I had the magic bean.  I guess other coping strategies are keeping a close support network, surrounding yourself with pleasant people and pleasant things.  Prayer, meditation.  I'm not a good person to be dealving out advice on this! LOL.  I'm in the same boat.... Sending you big hugs Lucy.

Ginny 

Posted 8/14/2009 3:02 AM (GMT 0)
I am very sensitive to meds also. I usually have to opposite affect also. When my pain got so bad it was taking over my life I decided to try to Tramadol. I didn't want to be one of those people popping pills, however sometimes thats what we have to do. I got to the point I wasn't able to get out of bed. I got down and depressed over the pain and the fact I couldn't do much of anything that needed done or I wanted done. So I took the Tramadol. At first I was silly and took without food. I don't suggest that because it does make alot of people nauseaous. However it knocks the edge off and doesn't zone me out. I only take it twice a day and only 50 mg. It is non narcotic and I seem to be able to handle it fine. Now. If I take right before bed getting up in the morning is easier. I sleep good and not in as much pain in the morning. So give it a try. I had to. After that first nausea feeling I said I would never take again but my husband talked me into trying again and if I just take two bites of something I don't get nausea. It's worth a try girl..
Posted 8/15/2009 4:16 AM (GMT 0)

Thanks Lynnette and Smarty -  I do think I need to get on that fish oil.  Will see what they say in 2 weeks about adding something else.  I didn't try the Tramadol - pain eased up enough to put it back on hold.  I am a wimp about taking meds - but Plaquenil is really the only thing I've been able to tolerate.  However, it does seem I'm going to have to have something for pain beyond Advil - so I'm just going to have to bite the bullet and see what works.

Ginny, I guess I'm confused by the body/bone scan.  How does that rule out a connective tissue inflammation?  I'm thinking that is different than joint inflammation, but also occurs in the lupus/sclerderma/polymyositis disorders?  I hope the Plaquenil works well for you!

Lucy 

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