Feeling overwhelmed

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LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 12/10/2013 12:19 AM (GMT -6)   
Hi guys,
Just checking in and wanting to vent a bit. I went to a new rheumy today for a second opinion, just as a backup for when my current rheumy goes on maternity leave. She was very nice and totally agrees with the things we've been doing. My current rheumy wants me to go on benlysta but I would be her first patient on it so that made me a little nervous. This new doctor agreed on the benlysta idea and drew a bunch of labs to see if there's anything else she needs to suggest. So overall the appointment went well. But I however, am not doing well.
 
I had to work the weekend and by my second 12 hour shift on Sunday, I was a mess. I was dealing with the pain (like I always do) until it got too severe and I had to go home. I am now overwhelmed with pain again and feeling very discouraged. I have been off of prednisone since October 30th and am feeling like I'm going to have to go back on, even though I do not want to. The doc I saw today said it was up to me if I wanted to or not, she wasn't going to force me. I really don't want to but I just don't know how much more pain I can handle. The whole right side of my body is in revolt. I can barely stand to type this because my right arm is killing me.
 
I'm supposed to work tomorrow and am trying to decide if I should even try to go or not. Like I've said before, I love my job more than anything and just can't give up. I've still been actively searching for new jobs (even though that's also something I don't want to do) and have been on interviews. There is a part time job opening in my hospital, in a unit I don't really want to work in but would be much easier and a lot of sitting. I've been trying to decide if I should just apply and take it if possible. At least I would still be in my hospital, not lose my benefits (they would however be more expensive b/c I'd be only part time but I can handle that), not lose my doctors, not mess up my school stuff, and still be able to see my friends occasionally. My husband keeps telling me it doesn't have to be forever either. I am just so frustrated and stubborn when it comes to giving in and giving up because of this crappy disease. He keeps telling me maybe if I can just get stabilized and keep working just a little that once I am better then I could go back to what I really love. He's so positive all the time and I just want to give up.. all I can do is worry. He'll be getting laid off this time next year, and even though we don't live outside our means, I still worry about me taking a part time job. I just don't know how to keep going every day like this.
 
Another thing I've been thinking about is different diets. It would be very hard for me to follow a diet but a girl I work with is very dedicated to the gluten free lifestyle and has been trying to get me to look into it. Is anyone on a gluten free diet or have you tried it? Results?
 
I just need some direction from someone (my parents are not there for me as much as I would like and really the only people I have are my husband and coworkers). What do you all think about the steroids? Benlysta? Changing jobs? And by the way.. I'm sorry I'm all over the place tonight. Its just kind of all spilling out because my mind feels like a tornado right now. Hope you are all hanging in there and I appreciate each and every one of you!
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prilosec daily, Lyrica BID, Folic acid daily, MTX injections weekly, Celebrex BID prn, Tylenol prn, Tramadol prn, Dilaudid prn, Zofran prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble~

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7725
   Posted 12/10/2013 9:10 AM (GMT -6)   
Have you tried any of the "big three"? These are the drugs that are usually used to try and lessen the amount of prednisone you use, and are often the key to scaring the Lupus into a quieter stage.

Imuran, Cellcept, and MTX, in no particular order. Sometimes one of these will help us Lupies - it's difficult to guess which, if any, will help, or who they might help, so it's basically a trial & error with them.

Personally, Imuran didn't do much of anything for me, but Cellcept seems to have put my Lupus into a kind of remission/quiet stage. Others Imuran helps but Cellcept does nothing...others MTX helps.

I'm still thinking you need a rest from the 12-hr shifts. A part time more sitting position would give your body such a huge big break!!!

As for the anti-gluten diet - I personally think a lot of people are putting a lot of effort into this when they don't really have an issue. I think there are some home tests you can do to see if it's really a physical issue for you. If you do go on it, be sure you get enough roughage from somewhere!

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
Dx: 2002 "Life is far too important to be taken seriously" - Oscar Wilde

lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 675
   Posted 12/10/2013 2:04 PM (GMT -6)   
Lynnwood gave great advice. I will only chime in on the gluten free issue. I have been adhering to a gluten free diet a little over 4 years, and started it about 8 mos after beginning Plaquenil. It took awhile initially to get all the "bugs" out. There are issues that complicate the process, such as medications that use fillers that are not gluten free (had to switch to brand Plaquenil, which is gluten free) as I kept having trouble with generics). Also there are products labeled gluten free which are still manufactured on equipment that is also used for gluten products. I even had to replace the toaster, as everytime I toasted GF bread, I developed symptoms, and would go crazy trying to figure out the source.

In a nutshell, there are specific blood tests that can help with diagnosis. Some doctors will tell you you need a biopsy from your small intestine to be certain, and others will tell you that the possibility of a false negative result is too high. The very best way to find out if it's an issue for you is to simply investigate by seriously committing to eating gluten free for 2 weeks or so. This is much more involved that simply eliminating bread, as wheat gluten turns up in a surprising number of products and ingredients. So eating whole foods only for 2 wks - vegetables, meat, fruit, rice, eggs - nothing processed, really - and then trying a small bit of gluten via bread, for example, to see how it makes you feel. After 2 weeks you should be able to tell nearly right away if the gluten is a problem for you. There are many websites with helpful information. Celiac.com The Celiac Sprue Foundation.....

For me, this diet was not a magic bullet. It probably took a year to really learn how to avoid all gluten, and in the process learn that I have other sensitivities like MSG, some dairy, some preservatives, etc. But - I have had considerable improvement in many of my symptoms, such as pain and fatigue and I have fewer flare ups. And I definitely am extremely sensitive and get sick with even small amounts of gluten that inadvertently find their way into my belly. It isn't any fun adhering to this, but unchecked the damage accumulates and causes lots of problems. Celiac disease is an autoimmune disease, not an allergy. This means that there is damage left behind after the substance has left your GI tract, while an allergic reaction is pretty much over and done once it has cleared the GI tract. The GF diet "trend" tends to confuse a lot of people.

Anyway, I wish you luck and would encourage you to investigate the possibility. Improvement of any kind is usually welcome and worth the effort.

Lucy

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 12/10/2013 4:12 PM (GMT -6)   
Lynnwood,
I have tried all 3 :) Currently I'm on MTX injections once a week. First we tried MTX pills and when I got to the dose that was making me feel a little better, I was so sick and had diarrhea so bad that we had to stop those. Then we tried Imuran which did nothing for me. CellCept seemed to work pretty well but then I had an episode of confusion and a black out where I lost 4 hours of a day. I was at Walmart not feeling well and that was it. Next thing I know, I was at home, crying because my head was hurting so bad and calling my husband. So my doc took me off of CellCept just in case that caused this. My brain MRI was normal but we never investigated into it anymore. And I haven't had this happen since. After that we started the MTX injections. I was doing really really good so I decided to go off prednisone. Now I'm miserable again. So that's my dilemma.. go back on steroids or be miserable :(
 
Lucy,
Thank you for the info. The biggest thing that worried me about what you said was that you had symptoms just after toasting your bread in a toaster that had regular bread in it before. My husband will not be doing this with me and so I will constantly be exposed to gluten products and using the same cutting boards, surfaces, etc. I've been tested for celiac and was not sensitive. I don't know if that makes any difference. This is all so confusing :-)
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prilosec daily, Lyrica BID, Folic acid daily, MTX injections weekly, Celebrex BID prn, Tylenol prn, Tramadol prn, Dilaudid prn, Zofran prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble~

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/10/2013 10:39 PM (GMT -6)   
Lynnwood and Lucy gave you very good answers to your questions. I have to agree with Lynnwood you really need a break away from the 12 hour shifts. Your body just can't handle that right now. I'm not suggesting that you give up working totally. However, going to a part time position where you could sit more would be much better right now I personally think.

As to whether you should go back on the prednisone, that's really a personal call. I can say this to you I've had lupus 26 years now, I was left untreated for 13 of them. I started on prednisone on June 1st 2001 at 5mgs daily. As of today December 10, 2013 I'm on 20mgs daily and have NEVER been on a dose less than 10mgs other than the 5mgs I took the first two weeks in June 2001.

I'm totally steroid dependent and at this point my Rheumy believes I'll NEVER come off the stuff. He believe that my adrenal glands will never start working again, IF, we could manage to get me below 10mgs. I now suffer from all of the very bad side effects of the steroids. I'm not just talking the weight gain, I'm breaking bones w/o doing anything to them, I've got a huge hump on my back, the stretch marks that go with the steroids, and a moon face you wouldn't believe. Also, I'm thick thru the chest and belly, but have not butt and chicken legs. I'm so thin in my legs and butt my pants fall down while walking most of the time.

It's possible that you could try to go on a low dose of steroids like 5mgs or 10mgs and see if that's enough to help you feel better. I'm going to stick my neck out a guess that if you were getting more rest and not working the shifts like you do, and maybe 5-10mgs of steroids, your flare would resolve itself fairly quickly.

I guess you just need to make yourself a list of Pro's and Con's regarding the steroids and your job. Weigh your options and go with what YOU feel is best. I know dealing with the disease is very frustrating. I miss working so badly, however, I know I'm not well enough to work at all. Plus, I spend about 22 days out of the month going to some kind of medical appointment. So for me going to the Dr is my job.

I hope that you're able to make decision and be okay with it. I really hope that you begin to feel better and can start to get some much needed sleep and rest. I'll keep you in my prayers and let us know how you're doing.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

LupieICURN
Regular Member


Date Joined Jan 2013
Total Posts : 47
   Posted 12/11/2013 4:02 PM (GMT -6)   
Barbara,
Thank you for taking the time to message me. I know you're going through a lot right now and it takes so much energy for you to do this. I appreciate you ideas on the pro's and con's list. I've been thinking about writing it out (b/c I've been going over it in my head for weeks). As for the prednisone.. I was doing well on 5mg before. Still had pain and fatigue but I could at least handle it. I am just so worried about all the negative long term side effects of it like you are experiencing now. In the last 2 years, I've been off one other time for 6 weeks. I've gained 20lbs in the last 2 years, have a moon face, stretch marks.. and now a low self esteem. I'm losing my drive to want to continue this journey. I just want to stop taking all my meds and see what happens. I just feel like it can't be any worse than what it is now. I'm sorry to be saying these things when I know that you have it much harder than me.
Nicole- 25, married, no children
Endometriosis, Lupus, Raynaud's, Degenerative Disc, Migraines
Meds- Multivitamin daily, Lo Loestrin Fe daily, Plaquenil daily, Prilosec daily, Lyrica BID, Folic acid daily, MTX injections weekly, Celebrex BID prn, Tylenol prn, Tramadol prn, Dilaudid prn, Zofran prn

~Don't worry about tomorrow, tomorrow will worry about itself. Every day has enough trouble~
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