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Jend719
Regular Member


Date Joined Oct 2012
Total Posts : 23
   Posted 4/13/2013 5:55 PM (GMT -6)   
Hi all,
I haven't been here in awhile. The past few weeks have been revving themselves up for a flare and this week ...BAM!!! Awful few days of laying on the couch doing nothing! My dogs were/ are still happy about it. ..and watched all the last season's episodes of Nurse Jackie haha.

Anyway, it started with the usual aches, pains, and tiredness. Then progressed to extreme stomach pains right before Easter. They have subsided but still linger in the background. Diarrhea on and off, a trip,to ER, and a GI doc, and this week on the couch with body pain, foggy head, etc. the last few days I've been getting this weird, sharp pain on the right side of my head. Not a headache per se but feels like a brain ache. Also, I've been having more hypoglycemic like episodes recently. I feel like I'm falling apart and sometimes I honestly think I must be slowly dieing.
I see a rheumy at mount Sinai in NYC who is on castle connellys list of top docs. I like hike but also feel like I'm getting impatient.

I'm dx'd:
Fibro
Cfs
Tmj
Sleep apnea
Occipital neuralgia
Ibs
Undifferentiated diffuse connective tissue disease (possible lupus or ra)
Positive Lyme
Hypercalciuria
Osteopenia

I don't know what the head thing is now and I hate to be "that patient" that's always complaining. I feel like a hypochondriac...even I'm sick of hearing it already.

Meds:
Plaquenil
Metoprolol
Medrol
Nexium
Celexa
Hydrochlorathiazide

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/13/2013 10:20 PM (GMT -6)   
I understand bad flares. Are you on any steriods to help calm your flare?

If this headache is worrying you then by all means complain to your doctor. That's what you pay them for-to make you feel better.
I remember when I was first diagnosed I'd suffer from terrible headaches that lasted all day.
I noticed you have possible lupus too, are you using sun protection and avoiding all UV lighting (fluorescents and halogen)?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jend719
Regular Member


Date Joined Oct 2012
Total Posts : 23
   Posted 4/14/2013 4:59 AM (GMT -6)   
I've been on medrol maintenance dose of 4 mg every other day. I asked him to increase it. He said to double it for 4 days. It is helping but I don't think it's really kicked its butt yet and I'm done with the 4th day to back to 4mgs tonight.
As for lighting, I'm home most of the time. I spent the entire summer last year by the pool. I don't know how that will be this year.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/14/2013 1:52 PM (GMT -6)   
I spend most of my days inside the house too. My bedroom/sitting room has heavy blinds and is lit with LED light ropes. I use LED light ropes because it's getting harder to find light bulbs that are not fluorescent core. I also have trouble with incadescent bulbs if they are 3 way type.

I used to do the beach for vacation. I gave away my swimsuit and capris. I wear my shorts only inside the house.
I miss the sun...sigh.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jend719
Regular Member


Date Joined Oct 2012
Total Posts : 23
   Posted 4/14/2013 2:19 PM (GMT -6)   
I may be in total denial here but cannot imagine not being outdoors and in the sun. I will probably pay for it physically and maybe that will be a true test of what is going on with me. I live in the northeast and this winter was loooooong!!! Everyone hibernates and then crawls out of the woodwork when spring hits. I think spring may finally be here...yay!
Does everyone with lupus get affected by the sun and the light?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/14/2013 3:06 PM (GMT -6)   
People are affected to a different extent -- it all depends on your personal manifestation of Lupus. I couldn't live without light - grew up outdoors in south Florida. Now in Georgia with the hot summers...I can go outside mornings and after 5:30 pm without too much of a physical reaction.

Now that means I'm doing something outside in shorts & t-shirt, and keeping well cooled with shade & water. I can't do midday when sun is raw and heat is too much -- then I immediately break out into a red sun rash, and if I let that go it'll turn into a nasty lupus flare which I totally avoid if at all possible!!!

I won't generally spend more than 1.5 - 2 hrs a day outside, then skip a couple days before I do it again. Not sitting by a pool, not boating -- reflection off the water burns me fast!

My house windows -- well, the drapes are usually open to let the light in, but I'm not sitting in the sun. I do avoid putting florescent lights in the house. And I have the darkest legal coverings on my car windows.

My eyes are actually much more light sensitive than my skin -- I'm only without sunglasses on *very* overcast days. Otherwise I'm squinting big-time...if I can get my eyes to open at all.

So that's how it works for me...although cautious, I haven't yet gone the route of the expensive 50+ rated clothing, etc. My fear with that stuff is that it will block the sunlight, but also increase the heat -- and heat is as much or more so a Lupus enemy!

Everyone's experience varies, you just have to try slow exposure and see what your body is comfortable with. You may get a rash, or simply find you fatigue increasing, or something else altogether! Fun, fun, fun!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/14/2013 6:35 PM (GMT -6)   
Feom what I've read on lupus sites is that 40% of people with lupus are not sun sensitive. I hope you're one of the 40%. :)

I'm more on the severe side of sensitive. The only time I can go outside without protection is sunrise or sunset. Even on cloudy days I'm covered and have my sunglasses on.
I don't drive much at night because headlights seem so bright to me. I once went through a horrible time where indoor lighting was too bright and I was forced to wear heavy sunglasses inside.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jend719
Regular Member


Date Joined Oct 2012
Total Posts : 23
   Posted 4/15/2013 4:12 AM (GMT -6)   
My eyes are definitely hypersensitive. I have sunglasses stashed everywhere. I wear them outside, driving, 365 days a year. I can't be without them. And they Re not enough sometimes. I guess I have noticed some changes. Sun burning faster than I used to. I thought it was just the medication (?). And a prickly heat looking rash at times.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/15/2013 9:39 AM (GMT -6)   
lol. It can be from Lupus and/or it can be from our medications. Who knows which does what?
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Zebra2014
Regular Member


Date Joined Sep 2012
Total Posts : 46
   Posted 4/17/2013 11:16 PM (GMT -6)   
Hi, Jen719 -
 
If/when you have a chance to explore the head pain issue with your doctor, would you be willing to share the outcome?
 
I was getting weird head pains in February, and attributed it to a CellCept dosage that was too high for me. After being on a lowered dose for a a few weeks, the random pains (NOT headaches) subsided a bit, but they still come on, randomly, and they kinda of freak me out. Like you say, they are not headaches. I get random areas of pain on my head, and sometimes it feels better if I actually apply pressure to the painful area! Wierd!
 
Like you, I've been hesitant to talk to my rhuematologist, as I, too, don't want to be labeled a "problem" patient.
 
This disease blows! :-)
 
Best regards,
Nina
 

Jend719
Regular Member


Date Joined Oct 2012
Total Posts : 23
   Posted 4/18/2013 3:39 AM (GMT -6)   
Haha... Of course! I agree regarding the pressure thing too.
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