Hi everyone its been a while but i need some advice!

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misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 12/20/2011 3:09 AM (GMT -6)   
Hi All!

It seems like it has been at least a year since I last posted. In terms of my health I feel like I am doing really well...I have been very stable, my labs look really good. Even though I still struggle with fatigue and back pain on a daily basis and had a couple episodes of costochondritis, I think I have been doing really well too :)

My only problem is, I think I am becoming a person with no personality and that maybe I am closing myself off more and more to my friends and I dont know why. I think its because I am being much more careful about my disease now then before..I'm 24 and I dont really go out much ever and dont really drink or anything. I'm becoming much more of a homebody and much more closed off to my friends.. so much so that I feel like I dont really have many friends anymore. I don't think I'm depressed, but I do think I am becoming more and more socially awkward. Whenever I do go out, I feel really out of place (nervous, self-conscious) and as if I'm not as fun as everyone else there, and definitely do not feel like I am as cute as I used to be. As a result I do not have fun when I go out. I feel like i can't keep up with "healthy" people anyways and therefore cannot have as much fun as them...that is why I think I am closing myself off with out realizing it, and as a result becoming a really socially awkward person.

Has this happened to anyone? What should I do? What can I do?

Thanks in advance for anyone's advice or support!

xx
Dx with SLE, Lupus Nephritis and Antiphospholipid Antibodies.
History of 2 deep vein thromboses, end-stage renal failure, pulmonary edema and shingles
Meds: prednisone, plaquenil, cellcept, warfarin, lisinopril, flexeril, oxycodone PRN, baby aspirin,

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 12/20/2011 8:46 AM (GMT -6)   
I feel a similar sense of aloneness.

I think part of it is the effect of medications, some of them really do make us withdraw a bit...if you aren't taking any anti-depressants, ask about it -- we have physical reactions to these meds, and sometimes need the physical help of an anti-depressant to get back to a place of normality.

The other has to do with the pain & fatigue. I simply don't have the energy to dance around and be bouncy. Do you take anything for the pain or is it constant?

Another thing is living with a physical illness makes us more aware of life's down side, and possibly makes us a little more serious than others -- something that will really differentiate you from your friends at your age.

I think with pain and fatigue management (you may not be getting deep restorative sleep, maybe a sleep study and some sleep medication), added with some anti-depressant meds and possibly some therapy, will get you back to a place where you can feel more connected.

It won't be instant, you'll still have to work to reestablish some friendships, but just something to consider and try.

Best wishes --- it sucks to feel alone all the time, I know!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

misscali
Regular Member


Date Joined Feb 2007
Total Posts : 154
   Posted 12/23/2011 2:51 AM (GMT -6)   
Hi Lynn, thanks so much for your response, it makes me feel a lot better knowing I'm not the only one that feels this way. You're exactly right about pain and fatigue being factors...I have constant back pain, and like you said, I just dont have the energy to dance or stay out all night like my friends do...actually just the thought of it makes me pretty tired!

I was on Zoloft right after I was first diagnosed, I think it was because I had been in the hospital for so long. I had kidney failure, multiple blood clots, shingles etc. so they probably just assumed I would be kinda depressed about the whole situation. I came off of antidepressants about 3 years ago, right now I take Xanax for anxiety and oxycodone for pain, both as needed. I feel like I do not need to take the anxiety medication very often, but my pain is pretty constant. Also, I feel like the dose I am on right now (5mgs 3x daily) is not really as effective as it used to be, probably because I have been on this dose for so long. I dont want to ask my doctor to increase my dose because there is such a negative stigma attached to taking pain meds that I don't really know how to ask without them thinking that I am some kind of addict....has anyone else had this issue??

It seems like I have tried so many different things besides meds to try and find some relief from the pain: physical therapy, acupuncture, massage, hot/cold pads...nothing really seems to provide any lasting relief. Right now I am working with a nutritionist to see if perhaps a change in diet will also bring about a change in my pain and energy levels. I have been doing a gluten-free, dairy-free diet for the past 5 months and I feel like I have more energy, but my pain and achiness are still the same :(

My goal is to be on as few medications as possible so I don't really want to go on an antidepressant, but I will ask my doctor about it and see what she thinks...I'm so young that I feel like I should have my whole life ahead of me, but at the same time thinking about the future scares me because I'm so afraid of my health declining or having another flare up. I wish I could just have the same "work hard, play hard," lifestyle as my friends and its just not an option for me which is hard to cope with and I think hard for others to understand...
Dx with SLE, Lupus Nephritis and Antiphospholipid Antibodies.
History of 2 deep vein thromboses, end-stage renal failure, pulmonary edema and shingles
Meds: prednisone, plaquenil, cellcept, warfarin, lisinopril, flexeril, oxycodone PRN, baby aspirin,
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