Wow, I feel REALLY bad

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Victoria72
Regular Member


Date Joined Oct 2006
Total Posts : 221
   Posted 3/10/2008 10:46 AM (GMT -7)   
Honestly, I havent felt this bad since my nasty flare last summer.  I didnt really feel like I had a flare coming on, but these past two weeks have been so hard on me, I didnt notice until now.  I had to go to New york for a week with my job... and of course we walked and walked.  I had never been, and what a blessing to be able to go and experience that.  The entire time I was there I felt okay, but tired.
Then last week I worked 49 hours, ran kids here and there, and caught a little cold.  Last night I had to stay up until 1am working on Lindseys Language Arts project... she had done all the work, but then at ten oclock the printer ran out of ink.  I had to come to work to print everything for her, and by the time we got home, she had to go to bed. (Shes only 11).  So theres Mom... gluing pictures of Barack Obama on a Tri-board at 1am. :-)
 
Today, I literally feel like Ive been hit by a truck, and I've got the nasty little rash coming up on my face.  I have got to get some rest, but how???  I know how, its just not possible right now with all we have going on.  So... pray for me guys, ok?  I need some divine intervention.
 
Thank you!   


 
Victoria
 
Mother of four, full time Systems Analyst
 
Crohns, Lupus (SLE) Jan 08, Pancreatitis Dec. 2005
 
Meds:  Medrol injections, Cellcept, Vicodin, Benadryl, Zyrtec

Post Edited (Victoria72) : 3/10/2008 12:01:00 PM (GMT-6)


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/10/2008 12:17 PM (GMT -7)   
(((((Victoria)))))) You really need to make a way to rest. Even if it's in 15 minute increments. It is so vitally important. You are in my prayers. God Bless you, Judy

Victoria72
Regular Member


Date Joined Oct 2006
Total Posts : 221
   Posted 3/10/2008 12:40 PM (GMT -7)   
Hi Judy. Thanks so much. Yes, I know so well the need for rest. My body craves it, but sometimes I find that if I try to rest for a short period, it makes me feel even worse. For example, today at lunch I went home. I was able to lie on the couch for about thirty minutes, and I didnt feel better, I felt worse. And, when I try to relax and rest, my body aches to the point of nausea. It feels like death all over to be still, honestly I dont know how else to describe it. Every night before I go to bed, I have to literally knock myself out with benadryl to be able to get off to sleep. My rheumy has tried everything from ativan to soma to neurontin and everything in between. What Im not allergic to, I have awful side effects from. Hes as frustrated as I am. Its just a vicious circle we get in. :(

Anyone else feel this way??
 
Victoria
 
Mother of four, full time Systems Analyst
 
Crohns, Lupus (SLE) Jan 08, Pancreatitis Dec. 2005
 
Meds:  Medrol injections, Cellcept, Vicodin, Benadryl, Zyrtec


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 3/10/2008 1:09 PM (GMT -7)   
((((((((( Victoria ))))))))))))

For me . . . the stress is the big issue to tackle. It zaps me faster than anything.

I've had periods of the insomnia too and I just don't want to take sleep aids. I did try amitriptiline for a while but decided to ditch it when my meds mounted to 9 different rx's. I was just afraid of the whole combination affect.

I have adopted the strategy of good sleep hygiene plus the following: if I ly in bed too long (15 minutes?) and can't fall asleep, I get up and crochet, knit or read and then try again. sometimes, when I am really frustrated, I'll do the "Thankful Alphabet" . . . beginning with A, I name something I am thankful for. I did reach Z one time and I started over with "people I am thankful for" starting with A. You can choose animals, flowers, etc. It really does work . . . I usually don't get to Z. Anyway, I don't ly in bed frustrated . . . It seems if I sit and do something else, I can get "zoned out" and try again.

Its especially hard because you have to get up at a certain time and head off to work. It seems my deepest sleep is early in the morning.

I would also look into your meds . . . one or more of your meds might be suspect.

When you come home to nap, could you get an extra hour or half-hour and make it up from comp time (when you've already worked late and are not getting paid for it) ????

I hope some of the others have some good ideas for you to try too.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 3/10/2008 2:46 PM (GMT -7)   
Hey Victoria,
 
I'll be praying for you for sure.  You know, when I was on my vacation to L.A. last month, I felt great the whole trip.  We actually walked a small marathon it felt like!  I felt really good.  Then 2 days after getting home, my lupus flared up. I felt like total crap for a week.  I am on a bit more prednisone and I'm starting to feel better.  But sheesh!  A vacation can be hard on us too. Which is so unfair!  The next trip we take is going to be a VERY relaxing one with very little to do!!
 
I hope you start feeling better soon.  Give it some time and it will be okay.  Probably just your body saying, "whoa, lady.  What did you do to me?  Sure it was fun, but whoa!!!"  LOL.
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/10/2008 4:02 PM (GMT -7)   
((((( Victoria )))))) Usually sleeping is not a problem for me however I do need a little help not so much falling asleep but staying asleep. I have so much joint pain (hips, back, etc) that just about every time I roll over I wake up, it's such a pain (literally.. tongue ). Have you tried taking Tylenol PM or Flexeril? Flexeril works well for me and sometimes if I am in pain I will tab 1/2 lortab and that helps also.

Try to get as much rest as you can, I know it's hard. You will be in my prayers. Take care
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 3/11/2008 7:19 AM (GMT -7)   
(((((Victoria)))) It sounds like your body finally reached its breaking point of what it could do and it's telling you that you did WAY too much. I understand though - when I'm away from home on vacation or doing something fun, I want to try to be as normal as possible and I try to be that way at home too and I hate that we have limits because of this disease. Also I know that with being a mom there are times you just can't rest and you need to push through and keep going. Your job sounds really demanding, but hopefully you can find a few break times during the day to rest a bit. If the flare lasts too long, please call your doc.

Hang in there and please get some rest. I can relate to feeling so miserable that you feel like you are dying when you lay down. The thing that helps me during those times is to take a vicodin to help take an edge off of the pain so I can rest a little easier.

I really hope you get some relief soon. Please take good care of yourself. You are in my thoughts and prayers.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Victoria72
Regular Member


Date Joined Oct 2006
Total Posts : 221
   Posted 3/11/2008 8:11 AM (GMT -7)   
Thanks everyone! I think I just need to get really creative with ways to rest. I think I may start a thread on that... :)

Rosie, remember the jerk of a coworker I have? He writes everything down that I do, I have to try to look as "perfect" as he is to keep my job, especially in this recession. He has no kids and lives with his parents at 38 years old... so his only life is working, and making me miserable. No comp time for me. I have to take personal or vacation time... but our new boss is looking promising, so maybe things will get less strict than they have been. I truly think workers are more productive when they have more flexibility with schedules.

Stacie, I cant take Flexeril, after a couple of daysof taking it my heart starts pounding hard and feeling heavy. My 17 year old daughter does the same thing with it. I take Soma, it seems to help some, but I only can take a half at a time. I havent tried the Tylenon PM, I think that might be a good idea.

Ginny, LA! I almost went there next week, a coworker is out for knee surgery, but I just couldnt do it physically. They are sending Mr. Perfect instead.

Hippi, Thanks for the kind words. Vicodin makes me itch like crazy! This is what makes my problems worse, there are so many meds available to help, my body just rejects most of them. ((HUG))

Blessings!
 
Victoria
 
Mother of four, full time Systems Analyst
 
Crohns, Lupus (SLE) Jan 08, Pancreatitis Dec. 2005
 
Meds:  Medrol injections, Cellcept, Vicodin, Benadryl, Zyrtec


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/11/2008 6:39 PM (GMT -7)   
Hi Victoria:

Just wanted to pass on (((hugs))) to you and ask if you're feeling any better. I hope that you've been able to get more rest and you're feeling better by the time you read this. Wanted to let you know that you're thought of.


Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/11/2008 7:03 PM (GMT -7)   
Victoria, when I first started taking flexeril, it made me feel weird first thing in the morning but it passed and wasn't bad enough to keep me from going to work, that was starting out at 10mg, now I'm at 20mg. I still don't sleep that great but I don't want to take any more meds and the flexeril does help with my stiffness in the morning and Lortab makes me itch like crazy!!!!! I need to find another pain med
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)


emmi
Veteran Member


Date Joined Apr 2005
Total Posts : 1529
   Posted 3/11/2008 8:44 PM (GMT -7)   
Hi Victoria,

I feel for you. You have so many responsibilities and to not have good rest has to be totally unbearable. I go through periods of insomnia usually from stress/anxiety/worry. Something I find helpful (besides prayer which doesn't always work, to be honest) I ordered a couple of guided relaxation CDs. One is great! I am always asleep before it is over. I also sleep with a relaxation/sleep CD on every night. At times, I can make myself feel as if I am floating on the music. I try the relax the body from the toes up to the head...deliberate breathing: a fairly deep breath in that is calming, exhale without pushing it out, just let the air leave your body and the stress goes with this. Focus on the breathing for as long as you feel the need.

I hope something someone has posted helps you. Anyone who can't sleep or has experienced it really feels for you.

xoxo emmie
Limited scleroderma with lupus overlap, Sjogrens, Hashimoto's thyroiditis, Raynauds, GERD, Hashimoto's (or Autoimmune) Enchephalopathy, seizures due to encephalopathy, migraines, fibromyalgia


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 3/13/2008 7:35 AM (GMT -7)   
Hi Victoria,
   I'm sorry your feeling so badly...((hugs)). I agree that you need to find some way of getting the proper rest and sleep, although I know thats easier said than done. It sounds like you are stressed to your limit, physically, mentally and emotionally. I do hope you have gotten some much needed relief by now. Please take care and update us when you can. You are in my thoughts and prayers.
                                                        Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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