New on website and having a flare

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New Member

Date Joined Jul 2008
Total Posts : 3
   Posted 7/20/2008 12:15 AM (GMT -6)   
I am 46.  I was diagnosed with Lupus 8 years ago.  The first 6 years I had the joint inflammations and the fatigue but with Plaquinel it was kind of controlled with minor flares here and there.  Then teow years ago the flare ups will not stop, i started having major pain all over and bruises.  I quit working and stayed home for 7 months.  All my symptons desapaired within 1.5 months from quitting my job.  I went back to work since I am a mom with two kids in college.  Unfortunately I started having aflare up again, one that would not quit.  It has been about 6 months now.  My thyroid is not working and my primary doc prescribed Thyroxine an dI think that made things worse. 
I cannot quit my new job, cannot afford to go on disability , I am afariad of the new more aggresive meds that I think I will have to take and I am just feeling so sorry for myself today.
I am usually teh strong person tghat people come to and I am teh fun person always ready with a joke and a smile abut I feel it is almost like a big act.  I sholuld get an oscar.  Inside I am just a scared person who is just sooo tired of being tired of being unable to do teh every day things without pain.  I have a number of friends and family bujt As I said I am teh one that they come to so I feel almost weird going to them knowing that I am a much stronger person.
I hate feeling sorry for myself.  Even reading the enteries on this forum I know I am very fortunate.  None of my organs are damaged.  It is justteh day in day out pain that is really getting to me.  I guess I am having aterrible day.  Sorry for venting.  Even typing hurts.ugh!
CA Woman

Regular Member

Date Joined Mar 2008
Total Posts : 110
   Posted 7/20/2008 7:56 AM (GMT -6)   

Everyone here has felt the same as you at one time or another; even feeling sorry for ourselves.

I take meds for my thyroid as well, and it took about a month for me to start feeling better with it. How long have you been taking the thyroxine?

It is scary to take on more meds. I feel dread everytime a new one gets added, but when my body starts feeling better I am gateful.

Don't be afraid to go to your family for support or to tell them that you just don't have the strength to help them. Your body is under enough stress as it is, you don't need to take on other peoples. They will understand, and they just might surprise you with their strength. Having that kind of support can make a big difference in how you feel physically and mentally. Sometimes I'll cry on my bestfriends shoulder for 2 minutes, and afterward I feel 100% better.

I hope you feel better soon.

dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
wife, mother of three

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 7/20/2008 9:42 AM (GMT -6)   
((((((CA woman))))))) I'm sorry you are going through all of this. I am also someone who feels guilty about venting, but I think all of us with lupus deserve some time to vent and feel sad and angry about this disease that disrupts our lives so much. Flares, especially long ones are really hard to deal with both physically and emotionally. For me, the two seem to go hand in hand and it can be really hard to stay positive when you have felt rotten for so long.

I was like you and for a while plaquenil helped quite a bit but then it got to the point where I just kept getting sicker and sicker. I finally got started on prednisone and it helped a lot. I don't like being on it long term, but right now it has given me a greater quality of life. I'm a little nervous about the chemo drugs that are used, but a lot of people here have gotten good results without too many side effects.

I'm glad you found this forum - there are a lot of great people here and we are very supportive of each other. It's nice to have a place to come where people can relate to what you are going through. Take care and I'm glad you joined us.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; 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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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 7/20/2008 11:18 AM (GMT -6)   

Hippi and Robin are right. We really relate to what you're feeling and at one time or another just about every one of us could have written your post. When I was going through a long flare like you are, I slipped into depression and sometimes it was hard to tell if the overwhelming fatigue I felt was from the lupus, the depression, or both. I've been taking Levoxine since 1988, when I had my thyroid removed, and I've never thought, nor had any doctor suggest, that it interferes with my meds.

Are you seeing a rheumatologist? Don't be afraid of the stronger meds. I HATE prednisone, but it got me through my worst flare and today I'm doing real well. I hope you have a good relationship with your rheumy and that you can communicate openly with him or her.

When you go to the main lupus page of this site you'll see a post that says Lupus Resources. The eigth entry was prepared by one of our own, Emmi, and is a pretty helpful list for newcomers to this site. There are lots of other helpful resources on that site.

What helped me the most was this forum. I found that sometimes friends and family didn't understand and I also didn't want to overwhelm them by talking about how I felt all the time. I have an old friend who was diagnosed with lupus thirty years ago and I've never had a conversation with her that she didn't complain about her lupus and I was determined not to do that for fear that it would run off my friends. So I came here and complained, whined, ranted, and moaned about what was going on with me. And my complaints were always answered with understanding, support, and love from my fellow lupies on this forum. And I got lots of questions answered.

So I hope you'll feel a little better knowing you're not alone, and also knowing that there are folks out here that will be there for you. And don't minimize what you're going through just because there are people who may have organ damage or other problems. You're sick and you need help. I hope you get some answers from your doctors.

I'm glad you're here.

Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin

Regular Member

Date Joined Feb 2007
Total Posts : 102
   Posted 7/20/2008 5:15 PM (GMT -6)   
Hi Cawoman'
We all have to vent sometimes and so you go right ahead and we all have days when we feel sorry for our self and that's okey too because a good cry is good for you sometimes. There are days I have to push myself out the door and try to act happy when I am sad so I understand what you mean but lean on your friends when you need to.

Hope to hear more from you,
Lupus, RA, OA, Raynard diseases, Hypothyroidism and a Breast cancer survivor.
Meds. Plaquenil,Synthroid,Lexapro,Mobic,Hydrocodon5/500 for sever pain.

Regular Member

Date Joined Jun 2008
Total Posts : 88
   Posted 7/21/2008 11:33 AM (GMT -6)   
Welcome to the forum, CA Woman. Do not feel bad for feeling sorry for yourself. You have good reason to feel that way. And don't apologize for venting. That's what we are all here for. We listen to one another and give support and advice, and sometimes just a shoulder to cry on. You are definitely talking to the right group of people. I understand how scary this disease and the treatments for it can be, and I also understand about the chronic pain. It can really wear you down, physically, mentally and emotionally. I hope you find some sort of relief soon, and I hope this forum is the type of support you need. If nothing else, at least maybe it might make you feel a little better just knowing that you are not alone in feeling the way you do. Feel free to vent anytime!
Lots of Love!
Lupus, Rheumatoid Arthritis, High Blood Pressure, Anemia, Congestive Heart Failure, Kidney Failure

New Member

Date Joined Jul 2008
Total Posts : 3
   Posted 7/21/2008 11:28 PM (GMT -6)   

Thank you for all your support.  I did go to my doctor and took me off my thyroid med.  I hope this will calm things a little.  Actually just reading what everyone is on and how they are handling things does help.  I do not know of people my age.  Most people I know with Lupus are much older.  I even wanted to go to local meetings and found they have it in the middle of the day and that the average age is over 60.  I wante dto talk to people who are having to face the same issues as I do.  Haing to work every day, taking care of kids when they were young, doing the day in day out things and keep going when every move hurts.  How to stop the bad thoughts, when nothing seems important any more.  I know this is the pain talking, but as rational as I am, I cannot stop thinking that way.

CA Woman


Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 7/22/2008 7:17 AM (GMT -6)   
Hello CA Woman,

Welcome to the forum. I'm so sorry you are having such a hard time. Part of your post really rang true for me as well.

cawoman said...
\I am usually teh strong person tghat people come to and I am teh fun person always ready with a joke and a smile abut I feel it is almost like a big act. I sholuld get an oscar. . . .

I hate feeling sorry for myself. Even reading the entries on this forum I know I am very fortunate. None of my organs are damaged. It is just the day in day out pain that is really getting to me. . . .

We really do go thru times when we should be awarded an Oscar. I'm playing that part right now too. I feel like each new symptom and dx and limitation requires some new adjustments in my thinking. I've recently felt like I'm getting painted into a smaller and smaller box. But . . . I'm like you as far as healthy organs . . so I also feel bad for feeling bad . . . if that makes sense.

Anyway, I've found that there is simply an adjustment period to learn how to cope with the new pain or the new issues. And once I get the inside of my smaller "box" decorated, I'm feel more in control again and happier.

There is a topic called "bridges". I'll bump it up for you so it will be on the first page again. Really helpful. Just a short little paragraph by one of our members, Mom46 (Babs).

I'm 55. But I've never heard someone say that everyone they know who has lupus is older!! Lots of the members here are VERY young. I was actually told, initially, that I was "too old to have lupus". confused

Glad you found us!


In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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