Just Venting

General
1

I saw the Rheumy today and was hoping to be released to go back to work at least part-time. That was wishful thinking he says I still have a couple months to go I need to give my body time to adjust, rest and heal. I have had some improvements but I admit I'm not 100%, guess I was trying to push myself too fast. I have so many thoughts going through my head and I thank God for my hubby and mom who say not to worry everythign will be okay.

I am starting two new meds today methrotrextate??? anybody have any experience with this and amitryptline for sleep...This lupus thing is taking some getting used to, I have always been a very active person and have worked since I was 17 years old, I am not quite sure what to do with myself right now. I didn't realize my life would change so much.

2

I was on amitriptyline for migraines and it also helped me fall asleep, but I had some wild dreams while I was on it. Not nightmares, but they were very bizarre. After about a month the dreams went away.

Lupus takes a lot of getting used to. I've always been someone who needs to be busy all day every day and that really had to change when lupus because a possibility and then a reality for me. Really listen to what your body is telling you. Rest, relax, and take this time to enjoy some of your hobbies. I've read a lot of books ever since being diagnosed... between waiting in doctor's offices, and the time I take to relax and rest my body.

3

I’ve never been on methotrexate and I was on amitriptyline for only a couple of weeks to help me sleep. Lupus sure does take some getting used to. I was also a very active person before diagnosis. My sis used to call me “a fly by the seat of my pants” kind of person. The first 2 years after diagnosis I was miserable and mourned the loss of the person I used to be, but I adjusted and accepted the limitations of the new me after that. Takes time to get used to having lupus. I guess you never get used to the pain, but you can eventually come to accept that this is your “new life” with lupus. Think of the things you liked to do on your days off from work and do them now that you’re not working. You’re going to have to make adjustments now because of lupus, but try not to let it get you down. We may not be able to be in the sun, but we can still be outdoors. If you can’t run, then walk. If you can’t walk, then read, write or watch tv. Just don’t give up.

4

I'm glad you vented! We all need to! I am a mother of 4 that range in age from 1-14. I am also a RN who worked nights only to come home breastfeed in the morning, take care of the kids and only get a nap when they did. I always said "who needs sleep? I have too much to do!". BOOM....that all changed. I got sick with what I thought was a terrible flu in October...never went away...plus other symptoms began. ANA pos. all other more definitive neg. I body has physically shown 5 out of the 11....but diagnosis= fibromyalgia and autoimmune. I had to quit work..I was going to go back to school for my Nurse Practitioners and have postponed. My husband has to bed med me an hour before I get up. I could never sleep. I tried amitriptyline but it didn't work for me. It gave me the worst ever hangover feeling in the morning. I am on clonazepam (klonopin)...works wonders! no more restless leg or laying there letting my anxiety and thoughts get the best of me. I admit it...I overanalyze everything. I am on tons of meds and life feels like it is at a stand still! YOU ARE NOT ALONE! This is an amazing place to share info, chat, ask questions, and vent. etc The people on here are amazing! And many seem to have tons of info or sadly long term experience with this disease. I wish you all the best and hope that your new med works for you. I hope you can wake up refreshed and find a good way to live another day!

5

thank you so much everyone, i was so afraid to post and it feels like no one understands sometimes. so glad i shared

6

I have had Lupus for about 13 years that I’ve been diagnosis but realize I had it longer, my doctor didn’t think anything was wrong with me just continued to put me on antibiotic after another then I was. Sick for 4 months straight and he started sound testing and before I could get results I went to get my breast exam and the lady says do you know you have Lupus I says I wanting on my results and she says wait no longer you do have it, just think 4-5 months of me getting worst tired , weak , hurting and so on I could of been on medicine for lupus instead of every antibiotic know to man and can’t take because I overused it. My family don’t understand my illness they want me to continue to clean and do things that I need to do. I hate this disease because no one knows what’s I’m going thur.

7

@AnitaChandlef, I agree, no one knows what I'm going through. I have a bacterial infection, that is going through my body, received medication, but, it seems like the Lupus is showing its head once again. I was in remission. My cough will not stop and the antibiotics are taking forever to work. I am so sick of this Lupus.

8

I hear you. I had been an RN for 20+ yrs in NICU when I got diagnosed. I had to work as a Case Manager due to stress of working in hospital. I retired at 57 with Lupus Nephritis. It's really hard when you're use to being busy & around people all day. Lupus can be a lonely disease.

I've taken Methotrexate in the pass with no side effects. I'm on Cellcept 1,000 mg & Prednisone 7 mg. You need to take care of your body, sleep 8 hrs, eat an anti inflammatory diet. Try to not stress out. Lupus is different for everyone. The Lupus Book by Dr Daniel Wallace is a great guide to what to expect with this chronic dx. Hope you feel well soon & can return to work.

9

I'm so thankful to have this place to come to,filled with people sharing similar experiences. I go to a state hospital, don't have any insurance, I go to my regular MD close to where I live.She gives me pain meds for which I am so thankful, (went many years without) but she doesn't really address my disease.I was diagnosed with mixed connective tissue disease in 2009,one of the primary diseases is Lupus Discoid.I had a positive ana for about a year,then suddenly it went negative.My rheumy released me.I assume the Lupus went into remission.So last year I had 2 heart stints, fatty liver, emphazema, and now my stomach problems are acting up.I had none of these things in 2011.So im turned down for disability recently.Then my Dr. referred me to another rheumy it was 1.5 hour drive.This man I tell you was something.He looked at me an says who diagnosed you with mctd,or lupus,when I mention my old rheumy,he begins being very negative about him.He tells me he doesnt want a name put to something,because some Dr. may come in the future and say oh no,you have Lupus you need this meds,and he tells me I dont need a bunch of meds.and continues to tell me I dont need prednisone(Which Im presently taking)he says maybe for your lungs but not for your body.I tell you, it not only sucks having Lupus but it sucks having it and being poor...This Dr. made me question my sickness.because the ana is still neg. but I still have the symptoms...Thank You God for my reg Dr.

10

I am in the same situation, my ANA was negative but, I still have symptoms of Lupus, not sure if you can have a negative ANA and still have symptoms.

rbluejae43 said:

I'm so thankful to have this place to come to,filled with people sharing similar experiences. I go to a state hospital, don't have any insurance, I go to my regular MD close to where I live.She gives me pain meds for which I am so thankful, (went many years without) but she doesn't really address my disease.I was diagnosed with mixed connective tissue disease in 2009,one of the primary diseases is Lupus Discoid.I had a positive ana for about a year,then suddenly it went negative.My rheumy released me.I assume the Lupus went into remission.So last year I had 2 heart stints, fatty liver, emphazema, and now my stomach problems are acting up.I had none of these things in 2011.So im turned down for disability recently.Then my Dr. referred me to another rheumy it was 1.5 hour drive.This man I tell you was something.He looked at me an says who diagnosed you with mctd,or lupus,when I mention my old rheumy,he begins being very negative about him.He tells me he doesnt want a name put to something,because some Dr. may come in the future and say oh no,you have Lupus you need this meds,and he tells me I dont need a bunch of meds.and continues to tell me I dont need prednisone(Which Im presently taking)he says maybe for your lungs but not for your body.I tell you, it not only sucks having Lupus but it sucks having it and being poor...This Dr. made me question my sickness.because the ana is still neg. but I still have the symptoms...Thank You God for my reg Dr.

11

I took the methotrexate for 2 years but didnt see any difference so I was taken off them.........Now that I have been off them I think they did help some............amitryptiline is a good sleeping med! I use that too.....

12

I have been on amitriptyline for sleep for quite some time. I was a little hesitant to take it at first, but I haven't had any issues with it and it really does help with sleep for me -- I hope it is as helpful for you. It not only helps me fall asleep, but helps me sleep much more soundly. It seems to have had the added benefit for me of lessening migraines.

13

Oh, the boredom. I sometimes think this disease seeks out those who are the busiest ;). I, too, have worked all of my life (since 14), sports, swimming...heck, I grew up in So Cal, what else are you gonna do but be outside playing? Then, bam! It's like hitting a door. But, I understand that the worst part is being able to rest your body but not your mind. I taught, attended college full-time and had three kids at home 10 years ago. Now, I know the walls of my house and the way to my doctors. We didn't even have cable in our home (except for our computers) until my diagnosis 6 months ago.

So, what to do with myself? I look for different mind game programs on Amazon and the internet, because, hey let's face it losing our minds is sometimes worse than losing our bodies. I do word puzzles, number puzzles, look for healthy gluten-free easy to make dinners I can make for my husband. (He likes that part :)) I work on small decorating projects for my house. I have been re-doing a wall in my old office in a faux-leather look which I will post if I ever get it done, but I do what I can when I can.

I guess what I am trying to say is keep as busy as you feel you can. I love my Kindle and @ www.bookbub.com there are daily free books to download. One I downloaded is called "Excuse me, I have misplaced my mind" or something similar about a woman with a different disease but still facing some of the issues we do. Now, if I could just find it in the 300 books I have downloaded, lol.

As to sleep, I have tried them all since a back-surgery in 2001. But, I just started Resteril and it is the first one NOT to give me bad dreams. It's a benzodiazapin and I think the difference is it relaxes my body and my brain. I think the dreams came from my brain still working overtime.

Honey, you are not alone in this. Don't ever be afraid to post because chances are Someone on here has gone through what you are going through or have gone through and that's what we are here for.

Sometimes we just have to find good things to put in place of the good things we once did.

This site is a good thing and this is a safe place to "just vent" anytime you need to.

Hugs,

DeAnne

14

Thank you so much for the support! I have managed to fall asleep the past few nights.

15

Unshoreandscared,

You CAN be ANA neg and still have lupus. It is ONLY an indicator, not a definitive tool. By the time my kidney biopsy was done (by a wonderful Nephrologist who took the time to look further than the surface), the damage indicated that I have had Lupus for a minimum of ten years. My biopsy was sent to Cedars-Sinai so I am very confident in the results. Some doctors only go so far as the blood work, which is NOT always the only way to get results. It had been suspected for years, but the docs only looked so far as the blood.

Insist on further testing if you are showing the other symptoms. Severe anemia, weight loss, chronic headaches, sensitivity to light, feeling ill after sun exposure, etc.

Demand it if need be. It's your life in the balance.

Best of luck,

DeAnne



Unshoreandscared said:

I am in the same situation, my ANA was negative but, I still have symptoms of Lupus, not sure if you can have a negative ANA and still have symptoms.

rbluejae43 said:

I'm so thankful to have this place to come to,filled with people sharing similar experiences. I go to a state hospital, don't have any insurance, I go to my regular MD close to where I live.She gives me pain meds for which I am so thankful, (went many years without) but she doesn't really address my disease.I was diagnosed with mixed connective tissue disease in 2009,one of the primary diseases is Lupus Discoid.I had a positive ana for about a year,then suddenly it went negative.My rheumy released me.I assume the Lupus went into remission.So last year I had 2 heart stints, fatty liver, emphazema, and now my stomach problems are acting up.I had none of these things in 2011.So im turned down for disability recently.Then my Dr. referred me to another rheumy it was 1.5 hour drive.This man I tell you was something.He looked at me an says who diagnosed you with mctd,or lupus,when I mention my old rheumy,he begins being very negative about him.He tells me he doesnt want a name put to something,because some Dr. may come in the future and say oh no,you have Lupus you need this meds,and he tells me I dont need a bunch of meds.and continues to tell me I dont need prednisone(Which Im presently taking)he says maybe for your lungs but not for your body.I tell you, it not only sucks having Lupus but it sucks having it and being poor...This Dr. made me question my sickness.because the ana is still neg. but I still have the symptoms...Thank You God for my reg Dr.