Welcome to the posts, as you can see there are not a lot of action here, but I read your posts and understand how you feel. I have had SLE for over 15 years, I have done pretty well coping. I also have RA and diabetes type 2 that is giving me a lot of grief with my feet and hands being numb. but still hurting go figure.. I am 55 yrs old and if out in the sun will suffer terribly for days with fatigue, sores in my mouth and nose and sometimes a rash.. just today I was talking to a lady outside and I just know I'll pay for it later!...View Thread
After over having Lupus for over 20 yrs, I fully get the fatigue problem, today I woke after a good nites sleep went to breakfast and came home to pick up the house but instead laid down for a fast nap. That was at 11 at 4 I woke up under pressure from my hubby. I have a terrible time getting to sleep at night, sometimes I can't sleep at all. I have not found anything that helps with the fatigue except being good to yourself and not fighting the problem. ..A wise doc told me to watch for patterns and avoid muscle memory. where one day you work hard then for three days your in bed, then start it all back over. I try to keep to a schedule and I don't do things for others like I used to. before Iw ould say yes but mean no.. terrible for me!!View Thread
OMG Jerri you are a walking pharmacy... sometimes don't you wonder if the meds are helping or making things worse? I take 22 different pills and sometimes I really wonder!! I had a doc once who threw out all but 3 of my meds and started me on a program to retrain my muscles.. I did everything like he said and 15 years later I still do it!! when I feel a flare coming on. what was happening I would feel good today so I would work really hard, then I would be down for 2 -3 days, then ok again and work hard again, then well you understand the circle of pain and down time we get. so he said..today no matter how I feel I went to water arobic class and did 5 minutes then get out and go towork or home every day for a week!! I know... then the next week add 5 more minutes and the week after add 5 more until you get to 30 minutes ( 6 weeks), then you do 30 minutes am and 5 minutes in the evening, and so on.. well I haven't had a serious flare since..I've had bad days... but Dr. Ho was right and I thank God for his help.It works for people after surgery and Fibro/CFS also.. I had my Mom doing it following a long stay in the hospital, she walked to the end of the driveway, thennext was across to the neighbors ect..., Anyway, Thanks for repling I'll talk to my wierd Doctor next week when she gives me my report on liver failure..yippee!View Thread
Jerri, Hi Merry Christmas to you, I was wondering how you are doing with the new meds, I saw you take Benlysta and I haven't started it yet, my liver tests won't let me the GGT is triple what it should be so I have to wait but I was wondering how you were doing with it??? Thanks Kathi, Kathi758@yahoo.comView Thread
OMG I cried reading your post, what a amazing Mom you are and your daughter is so blessed as are you! you have an inner strength that will get you both through many trials. My hat is off to you! KathiView Thread
Hi, I have been Luppie for many years, since 1983, my G'ma also had it and my Aunt. I've been better in the past few years and for that I am grateful. but... I still have many issues fatigue and brain fog, joint pain and brain/kidney involvement. but my biggest problem is my doctors here in Winter Haven Florida are idiots, my rhumey told me since my rash was gone I don't have Lupus anymore.. duh... and my internest prescribes meds that my other old doctor did but never asked why.. hello I take morhine for pain why?? would be my qyestion... for my back and shoulder stiffness and pain from knots we use a car polisher from Autozone that is orbital with a padded disc and my hubby goes over my back and shoulders nightly staying away from my neck, until the knots let go which is about 10 minutes. get one with a on off swtch not a putton you have to hold down!!View Thread
We have a car polisher, from local auto parts store, my hubby uses it on my back and shoulders it is orbital and warms the area. He doesn't push hard but it gets alll the knots out and since the disc is padded it cushions instead of pounding.
The tension goes and I feel 100% better til the next day...
My problem is my rhumey tells me I don't have Lupus anymore since my rash is gone.. I have one word..idiot...but now what?? he's the only doc in this area on my insurance... what do I do to work with him???View Thread
Hippichic65, I feel for you, I too have the same problem, since 11983, I did however find a rhummey that sat me down and gave me "the talk" , I was very scared that I was going to die as 6 of my luppy friends had passed that winter from pnemonia complications. First he reviewed my meds, he was a second opioion doctor not my normal, then he THREW out 3 of them and handed the bag back to me. and STERNLY asked if I would do what he wated me to do.. I said yes and he said if I followed his directives he felt that I would be out of the wheelchair and on my feet again. I was in the chair becasue I was to tired to walk. each week I was to go to the ymca and swim, adding 5 minutes to each week starting at 5 minutes.. ok, I did it, once I got to 30 minutes, I went 30 in the am 5 minutes in the afternoonor evening. the following week 30 am /10 pm and so on till I went 30 in the am and 30 in the pm. I have not been in the chair since and when I get wiped out I sleep and when I have enough I start all over again with his program it's been 8 years but I go back to it often.Just last weekend I slept all weekend and this week I am bak on the reprogramming of my muscles so they get out of the sleep routine and back to the working for me! I feel more incharge of me again. yes I get terrible fatigue and yes I hurt and I run out of spoons but I will NOT let lupus run my life anymore I adjust my life to fit the lupus. I am on disability so thankfully I don't have to find a job that would work around the sleeping issues I feel like I have the flu alot! which is how I explain to my friends. now I tell them I am out of spoons. eamil me anytime you need a shoulder @ Kathi758@yahoo.com and I will respond.View Thread
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