I feel bad every day of my life!!!

Hi everyone

I am a 51 year old Minister which has been dealing with SLE Lupus for about 7 years now! I have been so overly blessed compared to some of you poor brothers and sisters because it has not attacked any of my major organs as of yet but I feel generally sick, run down, worn out all the time like I cannot remember the last time I had a really good day, I get bone, muscle, joint pain and headaches if I go out in the sun for any amount of time at all or even if I get stressed out inside the house.

I can’t think straight I get lost for words and get confused very easily which is not very good when you’re a preacher in the middle of a good sermon and completely forget what it was all about in the first place and the brothers and sisters are looking at you like you have three heads or something!!!

It’s very embarrassing to say the very least also I feel down and depressed all the time like I have some kind of male menopause or something I say that because my wife is going through menopause and it seems like she is losing it also!!!

Do any of you always feel like this also ?

God bless

Thewatchman777

Post Edited (Thewatchman777) : 1/12/2011 3:42:37 AM (GMT-7)

In a nutshell, yes.   I feel like I have the flu, am just getting the flu, or am just getting over the flu.  I can't remember the last day that felt "flu-less".   The fatigue is almost worse than the aches and pain.  It's a constant balancing act and the center of gravity is constantly changing.....as in....I can try to do this much, but not that much, whoops, too much.   And sun exposure is a huge problem.

The cognitive problems ebb and flow, but I have sort of given up (after many years) of ever returning to my former "self".   I can't hold a job because the majority of days would not allow for that kind of energy expenditure.   Social activities dwindle to almost none, which is isolating and not helpful for the cognitive problems.  It's all a vicious cycle.  But like you, I feel fortunate that I've not had major organ involvement.

I sympathize/empathize with your position and all the complications that adversely effect it. 

There are some folks on here who have been helped with changing or starting new medications to address the cognitive issues - which I believe also might improve some of the other problems.   Perhaps this is something you could address with your doctor.

In any case, welcome to the forum.  It's a great place to learn, share and vent!

Lucy

Hi Shoeless and Lucy

This is a ward blog or at least from my side because I am not able to reply to either of you guys individually!!! Anyway I am so very sorry to hear about all your sufferings I know this disease is no joke!!! I wish I could gain 50lbs because I went from 195-200 down to 150 about four yesrs ago and I think I am up to about 160 now but it’s up and down, I live in the jungles of the Philippines I came here back in 2004 to start my own ministry but everything is like about 50 years behind here!

Plus it’s a third wirld country and the doctors here are not to up to date at all, but God is good because like I said it hasn’t effect any of my major organs yet and I pray to God it doesn’t, I was the pastor of the Lupus foundation here on the Island I live on but I had to travel about an hour and a half into the city in the hot sun in jeeps with no windows so I guess you know just how I felt by the time I got their Wow, than I had to preach and try to encourage about 40 or 50 women and children with Lupus which really messed my head up hearing some of their horror stories,

I think the worst was hearing about young teenage girls dying in their mother’s arms!!! I was supposed to be there to comfort them but it was messing me up worse traveling in the hot son trying to preach with a fried brain and listening to these story’s at the same time was just too much for me!!! I feel so sorry for you sisters but at the same time it’s also a little comforting knowing that this is not just all in my head like my Lupus doctor here keeps trying to tell me, she sent me to a head doctor and he gave me an antidepressant called Zoloft that almost killed me!

Thanks for sharing your story’s it helped me a lot and I will be praying for both of you believe me,

May the peace of Christ that surpasses all understanding rest upon both of you/

God bless
Johnny

almost 2 years.it was a big runaround!and thank-you for your prayers!Jesus is coming soon anyway....I hope so...

very kool-Im a canuck...but its bad here too.goin ta bed..youre in my prayers Johnny!

I hope and pray some others join in and share their experiences with us because I know that Lupus effects everyone differently but maybe we could learn from each other what to do or how to handle/cope with this feeling! Maybe someone has over this by a change of lifestyle/exercise/stress management ext, I have heard that diet has a lot to do with lupus patients feeling better and exercise but I can’t seem to be able to get started exercising again!

I remember awhile back about a year ago I started exercising by taking walks and stretching very early in the morning before the sun came up and it did help a lot but now since I have to go into the city once a week to preach now it’s like the sun is my worst enemy, but if I can’t go into the city to preach I feel useless and like I am letting God down or something its very depressing to say the very least because ministry is my passion/life!!! I guess you guys most have to deal with a lot of depressing times due to your limitations also! Sorry everyone just grabbing at straws here I guess,

I pray you feel better

God bless
Johnny

Hi Astrid - Sorry you're having such a hard time!   I would suggest you look into Celiac disease as the possible source of your malabsorption.  There is a Celiac forum here at HW also, and, of course, lots of information on the internet.

Most doctors are not familiar with it, and fail to diagnose it.  There are now gene tests that can be done to help pinpoint the problem - but like other autoimmune problems, it's not easy to diagnose, even with the gene test.

 

Celiac is an autoimmune disease in itself - if you have it you cannot process gluten (wheat, barley or rye), in your diet, and until gluten consumption is stopped, damage to the small intestine will continue and is what causes the malabsorption - which of course, causes other problems due to the deficiencies that arise.

I've was dx'd about a year and a half ago, and gluten free since then.  It has not solved all my problems - but I have had some good improvement.  Good luck and hang in there!

I hope the specialist you'll be seeing will have some answers for you.

Take care - Lucy

May God truly hold you guys!!!

Peace in Christ
Johnny