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Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/13/2016 1:27 PM (GMT -6)   
I've been doing really well for quite some time but had a stressful weekend and now seem to be flaring.

I have fibromyalgia along with my Lupus that I have mostly ignored but now I'm pretty sure that is what is acting up. I'm exhausted, not mentally but it takes focused energy to move, even to wiggle my fingers and toes. Every joint feels like it's stuffed with cotton and difficult to move. Joints and tendons hurt, some more than others - and the pain is moving around.

I know I need to keep moving to get things back in balance -- that hour I spent in the gym this morning gently stretching seemed like torture! Sure wanted to remain in bed with the covers over my head!!

I found that when your hands hurt it's *impossible* to squeeze the last bit of BenGay out of the tube!!!

I have a wide variety of meds around, most of which I don't take regularly anymore. I guess I'll try some pain medication and think about some prednisone. I tried muscle relaxers yesterday without much improvement.

Doesn't help that I have a suddenly leaking kitchen faucet - need to get the plumber before I can do much cooking. Water is VERY helpful in the kitchen!

Hope you all are having a good day, it's actually fairly pretty here and I hate to miss it, but sure don't feel like moving.

Oh, also my face is all broken out with little pimple-like things. Never had that happen in relation to these other symptoms! Any ideas?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/13/2016 3:36 PM (GMT -6)   
Are you photosensitive? Maybe you had too much sun?

I hope you feel better soon. Try not to over work yourself.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/13/2016 7:48 PM (GMT -6)   
I am photosensitive, that's true. Unfortunately I wasn't in the sun, and my photo sensitivity doesn't cause me to break out. So I'm trying to take it easy and let my body recover.

Hard to do, as I have things to do this week! Aw, well.

DianeB
Veteran Member


Date Joined May 2013
Total Posts : 1343
   Posted 4/13/2016 8:04 PM (GMT -6)   
Feel better soonest ! Sorry this is going on right now.

Flares are my unwelcome surprises that last for days, weeks, once, after dental procedure, 5 months.

Sometimes for no reason that I can track down.

The 'keeping moving' sounds great. It is a great goal. For me though 9 out of 10 times I am unshowered, in pj's, in my most comfortable positions in bed or chair or sofa. Too foggy brained to drive. Elevated body pain. Often an old injury site will hurt like mad too. Often they disappear as mysteriously as the appear.

I wake feeling like arthritis has crippled my joints, &/or my finger nails & toenails hurting. Skin is super sensitive. 10 minutes to an hour or so, of sleeping or every-morning movements - going to bathroom, opening frig to get a bite so I can take a pill, etc then most of the stiffness leaves.

No ideas about the bumps though.
Herniated cervical discs & other disc / spine issues, Arthritis, spurs
Injuries &/or pain to/in shoulders, elbows, wrists, knees, legs, ankles
Fibro / myofascial pain, neuralgia, neuritis

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/14/2016 8:15 AM (GMT -6)   
LOL. I realized what the stuff on my face is....

As Lupies we sometimes get odd chronic side-issues. Mine is hair follicle infections that are usually limited to the scalp. It seems they escaped the scalp and are marching across my face! Time for less sugar plus some topical treatment to get the little infections back in check.

It's always something!!

I figured out the hair follicle thing just before bedtime last night -- and somehow that prompted dreams (nightmares?) all about flea infestations that kept me tossing and turning all night!!! I so love these diseases! devil

But at least (so far) today I am moving a little bit easier.

Hope everyone is having a great day!

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 448
   Posted 4/14/2016 12:49 PM (GMT -6)   
Lynnwood,

I'm sorry to hear you are in the mist of a flare. As we all know stress is our biggest enemy, unfortunately this weekend could have done it. Sure sounds like true symptoms of a flare. I never dealt with skin issues until recently and then they exhibited in the form of acne, or so I thought. I finally asked my Rheumy after they would not go away and started spreading on my chest and thighs when I was in a full flare, he said it was a typical lupus rash. He didn't prescribe anything, I just use coconut oil at night and to remove my make (if I wear any). It has taken awhile but it's finally almost gone. It's hard being 48 and having what looks like a face full of acne no doubt.

Hope you start feeling better soon.

Gentle Hugs,
Melissa
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/14/2016 5:10 PM (GMT -6)   
I get those festered bumps on my scalp too. Very annoying and painful when they are in full swing. I also have a palm size group on my leg for over a year now. They take a long time to dry up. :(
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

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

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/14/2016 7:14 PM (GMT -6)   
Well, I'm not sure what you guys have as "festered bumps" and whatnot --

My infected hair follicles were professionally diagnosed by a dermatologist and I have a topical medication specifically for them. It's just been a long time since they were anywhere but my scalp so I didn't recognize them at first.

Melissa, I've found that the rheumy really isn't the best Dr to ask about skin stuff -- things that look like pimples are not the regular Lupus rash, I'd suggest seeing a dermo.

Joy, If you've had something for over a year it certainly warrants a visit to the dermo for you, too!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

acquiesce
Regular Member


Date Joined Jan 2014
Total Posts : 360
   Posted 4/15/2016 7:43 AM (GMT -6)   
Is it foliculitis? Infected hair follicles right? I get that quite often. In fact it seems like a family genetic type thing. My son and my sister and her son get it all the time too. be wary of hot tubs they are the worst for bacteria to set it off and sugar like you said, infections love sugar. we saw a dermo too. they are much more helpful with skin stuff. my rheumy thinks everything i show her is dermatitis lol

sorry i'm left hand one finger typing. hand surgery

hows the joints? any better? when i'm flaring like that heat is my best friend. heating pads, baths and prednisone... yuppers! sometimes i wish i had an oil can like the tin man in the wizard of oz and a simple squirt in the offending joint would set me to right again. wouldn't that be lovely?!
Be who you are and say what you feel because those who mind don't matter and those who matter don't mind - Dr. Seuss

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/15/2016 9:25 AM (GMT -6)   
Joints/tendons loosening up & getting better. As much as I hate moving when everything hurts, gentle stretching really helps. Took me till yesterday (Thurs) to feel like a human again! lol

Probably another week of carefully avoiding stress and taking gentle care of myself before I'm fully normal again!

My dermo had some fancy name that wasn't foliculitis -- don't know what it was, and am actually using a 2-year-old expired medication for it. Seems to be clearing up. Another thing you can do is mix shampoo 50%/50% with Betadine (Povidone-iodine, a iodine antiseptic) for when it's in your scalp.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 238
   Posted 4/15/2016 11:31 AM (GMT -6)   
Hi Lynnwood, glad you are starting feel better. I don't want to hi-jack your thread but I have a quick question re: skin issues. I saw some threads regarding nose sores. Have you ever had that issue and have you asked your dermatologist about it? I read that the nose sores can be caused by lupus and I have been getting them - 1 or 2 per month since January and am not sure if I mention it to the rheumy or the dermo. Any light you can shed on the topic would be helpful.
Hoshimoto's Hypothyroidism DX Oct 1997
Left Sided UC DX Nov 2013
Pancolitis DX Feb, 2016
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid, Hydrocort Enemas; Prilosec; Iron; Plaquenil; Vit D; Uceris
Past Meds: Lialda - severe joint pain, initial DX Drug Induced Lupus , discontinued mesalamine, symptoms returned - less severe, DX Lupus; Imuran = Fevers (serum sickness)

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 4/15/2016 12:51 PM (GMT -6)   
Since getting Lupus, my general rule of thumb has been to always mention everything to the rheumy! I have had constant nose sores, but don't think I've ever remembered to ask the dermo about them.

All anyone has ever done is make a note of them -- not sure there is any remedy. Sometimes putting a thin coat of Vaseline on them helps keep them from cracking and bleeding.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Mrs. Brady
Regular Member


Date Joined Feb 2015
Total Posts : 238
   Posted 4/15/2016 2:42 PM (GMT -6)   
I figured I would mention it to the rheumy. I need to go in to the dermo for my annual check. I'll mention the nose sores and if he has any ideas or remedies I'll post them. They are so darn painful!
Hoshimoto's Hypothyroidism DX Oct 1997
Left Sided UC DX Nov 2013
Pancolitis DX Feb, 2016
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid, Hydrocort Enemas; Prilosec; Iron; Plaquenil; Vit D; Uceris
Past Meds: Lialda - severe joint pain, initial DX Drug Induced Lupus , discontinued mesalamine, symptoms returned - less severe, DX Lupus; Imuran = Fevers (serum sickness)
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