Feeling pretty bummed...

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Dinosaur
Regular Member


Date Joined Jan 2010
Total Posts : 25
   Posted 1/31/2010 5:31 PM (GMT -7)   
I'm feeling pretty depressed lately mostly due to having to deal with side effects from Lupus. I've had to leave early multiple times from work, and had to take the past Friday off due to a shoulder injury that Lupus caused... and while some people from work are supportive and understanding, it's still hurtful to hear other people make comments like "She's just being a baby" or "Wow her pain tolerance must be really low". shakehead It makes me feel like giving up, though I know I shouldn't. I'm very frustrated and am doing what I can at work, and in life in general. I think one of the side effects I dislike the most is the constant fatigue. It's so hard to get out of bed and face each day... is there anything someone can recommend to help deal with that other than loads of caffeine?

Thanks,
Misty
22/F/FL


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/31/2010 6:46 PM (GMT -7)   
I know this sounds backwards, but one of the things that helped most with my fatigue was having some prescription medication to use as a sleep aid. I went from sleeping 18 hours a day & always being exhausted to sleeping 10 hours a night & not feeling nearly as wiped out (although still tired sometimes).

This was something my rheumatologist came up with, I would have never, ever expected such a result.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


crstr
New Member


Date Joined Jul 2009
Total Posts : 9
   Posted 1/31/2010 7:25 PM (GMT -7)   
stay away from caffeine, it really does a job on ur adrenals, which u need really badly now.........when i use to use caffeine, it got so it put me in the dirt for a week or more after the fact..........it got really bad, till i figured out my adrenals just couldn't handle it anymore..........

i don't know what kind of steroid u r taking for the lupus, but i take hydrocortisone, prednisone was awful for me.........i know, b 4 i was Dx, i was being treated for adrenal fatigue & was being given the hydrocortisone, but not enough.........& i was always so tired........it was so awful........after the Dx, the dr increased the hydrocortisone..........it has made a big difference.........

i am still tired & sometimes it gets bad, but i have the ability to take more of it, if i need it........i take it & things r better in a short while........

maybe u need more of whatever u use for the immune suppression of the lupus...........

i don't know how anyone works a job with this horrible disease........i've been dealing with it for 8-1/2yrs & there is no way i could work a job.........i would get fired after they realized i couldn't b counted on.........there r some days when getting out of bed is more than i can do.........

i have a wonderful husband who takes care of me, thank god for him.........
systemic lupus, adrenal fatigue, hashimoto's disease....57, mother of 4, w/6grandkids, w/ a wonderful, understanding husband.........


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 7:41 PM (GMT -7)   
crstr said...
stay away from caffeine, it really does a job on ur adrenals, which u need really badly now.........when i use to use caffeine, it got so it put me in the dirt for a week or more after the fact..........it got really bad, till i figured out my adrenals just couldn't handle it anymore..........


That may explain a few things about my general symptoms. I drink TOO much coffee!
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/31/2010 7:46 PM (GMT -7)   
Sorry Dinosaur, I didn't answer your question.....probably because I don't have an answer for you. I'm getting closer and closer to having to quit my own job(s). :(
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Dinosaur
Regular Member


Date Joined Jan 2010
Total Posts : 25
   Posted 1/31/2010 8:36 PM (GMT -7)   
I try to stay away from caffeine as much as possible. As for a sleep-aid I have only tried taking a muscle relaxer when I become so exhausted and need to fall asleep fast and not lay there in pain for a few hours. I don't like the idea of prescription sleep-aids since you can get addicted to them. I took an Ambien once and felt DRUNK before I passed out. Kinda cool, but probably not so great for long-term use haha. shocked Has anyone tried the Tylenol PM? If so, do you wake up with a hangover? Does it help with the fatigue? I will try almost anything at this point, I need to be able to work as much as possible.

Thank you all for your responses,
Misty
22/F/FL


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 1/31/2010 8:45 PM (GMT -7)   
A sleep aid might not be a sleeping pill. It all depends on the detailed history your doctor takes. For me, a medication normally used as a mild anti-depressant happens to work great to help me sleep without any hangover or other side effects. Medications that are 'addictive' in nature are not as prevalent as you might think, and expressing your concerns with your doctor can help you together choose the right option, whether it be using an over-the-counter solution or changing your medication every few months.

Whatever you try, remember to let your doctors know *everything* you put into your body - it is easy to inadvertently use something that might interfere with some trial & error your dr is checking out for you.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


FW
Regular Member


Date Joined May 2007
Total Posts : 477
   Posted 2/1/2010 5:17 PM (GMT -7)   
Ambien CR has made all the difference. I am so much more rested and able to deal with my lupus symptoms since I have been on the Ambien. Yes, I am probably addicted but it improves the quality of my life, so it's a choice I made. Hope you feel better.
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Darvocet, Prednisone.


Dinosaur
Regular Member


Date Joined Jan 2010
Total Posts : 25
   Posted 2/1/2010 7:33 PM (GMT -7)   
I was wondering if anyone has tried those memory foam pads to add on top of the mattress? I've been considering buying one. I read a lot of reviews from one from Walmart and it got a lot of great reviews, but a few naysayers said it retained too much heat and made them sweat. I was hoping maybe I would get a better night's sleep with a little relief on my joints?
22/F/FL


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 2/1/2010 7:46 PM (GMT -7)   
Actually I use a memory foam topper and it has made SO much of a difference for me! I still wake up in pain but it's really mild compared to the way it was before I bought the topper. It's EXCRUCIATING without it! I hate sleeping in hotels!

However, having said that, my son-in-law was dx with fibro so I bought them a memory foam topper but then he said it didn't help. So I guess it's an individual thing....I'm glad I bought it though because now I use it when I visit them! :)
Lyme Disease, autoimmune hepatitis, Hashimoto's thyroiditis, "lupus-like" CTD?, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD, degenerative disc disease, cubital tunnel, tarsal tunnel

Doxycycline, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

Darvon and Morphine Sulfate PRN


autoimmunediseasesgfliving.blogspot.com


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7018
   Posted 2/1/2010 7:52 PM (GMT -7)   
I would suggest buying a pillow or some other small sample of the material to test before committing to the larger purchase of one for the whole bed.

I have friends who love theirs and I tried it while house sitting --- I *hated* it!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

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