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python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 7/28/2007 3:06 PM (GMT -7)   
Hi Everyone
It's been awhile since I've been in here... I have a mixed bag of ailments...SLE, mixed connective tissue disease, scleraderma, polymyocytis, Reynaud's, hypothyroidism and acid reflux. I'm currently taking synthroid, prednisone, procardia XL, nexium, reglan, folic acid, methotrexate, low dose aspirin, vitamins, and tylenol for pain with vicodin for bad days.
I am having a few problems--occasional hard chills followed by fever(controlled with tylenol), general pain(also controlled with tylenol), and fatigue.  I am 42 and was diagnosed 6 years ago, and I am still learning the ropes. I usually have to lie down for an hour or two during the day and I know the fatigue is a part of all this, but does anyone have any tips for dealing with it?  I just don't get much done and on bad days I just feel useless. Any helpful hints would be greatly appreciated.
Hoping you are all doing well,
Donna
Mixed Connective Tissue Disease, SLE, scleraderma, Polymyocitis, Hypo-thyroidism
 
Prednisone, Procardia, Synthroid, Reglan, Nexium, Vitamins and supplements.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 7/28/2007 3:13 PM (GMT -7)   
Are you sleeping well? It really helps if you are getting a deep restorative sleep. I know many of us have to use a sleep aid of some sort when we take prednisone.

Before I took Trazadone for sleep, I was sleeping 18 hrs/day and still feeling exhausted. I thought my rheumy was crazy when he said "sleep aid"!!!! Why would I need even *more* sleep??? But with the Trazadone, I need less sleep than before and actually feel refreshed when I wake up!!!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Xanax, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Click: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/28/2007 6:54 PM (GMT -7)   
python, I think you have described how many of us feel living with this disease. You are so right that it is very hard to get anything done, when you need to rest almost everyday in order to be able to function at all.

I don't have any great tips, but what I do, is try to do even just a few things in the morning if I'm up to it because I usually lay down and rest sometime after lunch and even then, I'm most tired in the afternoon and evenings, so I find mornings are the best time for me to try to do anything I need to do. I have also learned that I need to be flexible. I might have planned to work on something only to find out that I was flaring on the day I had planned to do it, so I put it aside for another day. It gets frustrating to put things off and not get things done when you want to, but I've learned if I push myself too hard, I crash and it can take a long time to recover. I also try to balance busy days and restful days. If I'm going to be pretty busy one day then I make sure I don't have much to do for the next few days so I can hopefully recover. I'm working really hard at the whole balancing part because I tend to take off at full steam ahead when I'm having good days. I think the biggest thing is to listen to your body and I'm still trying hard to take my own advice about that.

Lynnwood brings up a good point about sleeping too. I recently started taking something to help me sleep and it has helped a lot and there have even been some days where I haven't had to sleep in the afternoons.

It's good to see you here again and hopefully you'll get some more tips about managing this disease - it's not an easy thing to do.

Take care
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; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/28/2007 11:13 PM (GMT -7)   
Hi python,
getting good sleep, like hippi and lynnwood said is important. Also, being on a lot of meds can make you sleepy, including vitamins, if they are taking a toll on your liver. You may want to check to see if your liver levels are ok or elevated, which would explain your fatigue. The thyroid hormone is supposed to pep us up a bunch and I know I'm not on enough because I couldn't tolerate it but maybe they need to up yours and check your adrenals, which goes along with it all. Part of it is part of aging. I have a hysterectomy but before I got on the estrogen patch, I was really tired and dull and the estrogen patch was the best thing I ever did. I didn't realize that for probably at least ten years my reproductive organs weren't making any estrogen hardly at all and I was dull and tired. Also, tiredness after a meal in the afternoon might be a sign of high blood sugar and you might want to test, I got a lot more pep going on those pills as well. I get tired after eating a meal with carbs or sugar and don't feel like doing anything. Some pharmacies or health depts test sugar, or you could probably stop by your docs office and one of the nurses might be able to do it.

As for dealing with it, I'd love to be an early riser, but Im not. I'm not worth a darn for two hours until all my morning meds hit and I eat. Then usually I hurt, because I'm awake fully to feel it. By nighttime I'm raring to go.

I think that its important to take time to smell the flowers, to enjoy life around you. I don't feel guilty about watching the birds at my feeder for an hour or two or slowing walking around the yard looking at wild flowers trees and bugs and critters. I do some writing when I feel like it. I don't feel guilty. When I worked, I worked extremely hard, too hard in fact and got very sick. I have worked since I was 12. My body is tired, my soul is tired. I'm glad to be off the "ratwheel". Sure, I'm not rich, but I can be myself without being pushed to follow someone elses schedule and suffering for it. I don't have to take medicine that kills my liver just so I can go to work some job where people would always wonder why I was sick all the time. I don't have to feel guilty about being undependable, calling in to work because I don't. I take it easy and go with the flow. In some ways, my illness dictates what I do in life, but it is a part of me, of my body, and life, and I've accepted that. Actuallly, it gives one time to explore other parts of yourself. Do you like painting, drawing, knitting, sewing, writing, photography, there are so many things you can do on your own schedule. I used to try to take a nap at work, I'd go out in my car. It was hard because sometimes people saw me and they thought I was a drunk or on drugs. If you have to work, like if I would have to go back to work, I would definitely be on some pills to help me with it but because I'm not, I have the luxury of taking less medication. Maybe try writing the next great american novel? A screenplay? There are online contests and maybe you could win a bunch of money. I also do crosswords at washington post, they are free, and soduku and other stuff there is too and it keeps the mind exercised and my vocabulary up, which is important. Then there is reading. There are great writing sites where you can put your stories and others can read them and you can get them published online. There's a lot out there beisdes healing well, and you can do it on your own schedule. REmember Edison always took cat naps, especially during the day,and he was a genius. Maybe check out the library too. There are a lot of books online now for free and you can get your computer to read them to you while you rest. I have my computer read me my stories while I rest so I'm like workingwhile I rest. Well, this is really long. I hope you feel better and I hope you learn to enjoy the good side to your illness, there is some good side somewhere, and you can use it as a chance to zen out and get closer to the earth and yourself and your friends. Take care and I will pray that you get some peace and don't feel guilty. Just enjoy, you are allowed to feel good sometimes, even if it is just when you are taking a noon nap!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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