New to the community and seeking support

General
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Hi everyone. I'm new to the community so I thought I would write a post to introduce myself and share a little bit about my story.

My name is Liz, I'm 29, I live in Vermont, and was diagnosed with Lupus in June of 2012. I was diagnosed with sjogren's syndrome as well as hashimoto's thyroiditis right around the same time. It was like a double - no triple whammy to my system. It was at the same time I was making the decision to end a ten year abusive marriage. It was extremely emotional, and stressful. I had been on disability for 5 years due to stress caused seizures and was in the hospital due to them during this time when all of a sudden my joints started to swell up, become extremely painful, and I could barely walk. My doctors started looking at my past and previous symptoms of sensitivity to the sun, hair loss, exhaustion, and decided to run tests. It was determined that I had lupus. I was so upset. I couldn't believe it.

I left my ex-husband. I was started on plaquenil and prednisone, and after about three months the flare up was finally over. My base line is always about a 3 on the pain scale...I'm always in some level of discomfort. My joints are always a little achy, as well as my muscles. I get tired very easily. My seizures have fully stopped - leaving my ex had a huge part to play in that. That was a hugely positive thing in my life. To no longer have to deal with the seizures is wonderful. But I'm extremely frustrated because it feels like the seizures were replaced with lupus.

I had a second flare up in July. I was put on prednisone, but started to react emotionally to it. Became very depressed, and couldn't sleep, so my doctor switched me over to Medrol which I seemed to do well on. Starting at the beginning of September my doctor had me taper off of the Medrol. Well, around September 14th, I started to feel the symptoms of a flare up coming on again. I called my doctor, he asked me to start the Medrol up again. On September 17th I was sick. I was feeling faint, weak, and ended up passing out. My fiancé (I met a wonderful, caring man in April who I know I was put on this earth to be with, and we are engaged to be married next June), took me to the emergency room. They ran blood work, and said my potassium and calcium were low. The ER doc said that my rheumy took me off the Medrol too fast and that my adrenal glands didn't have time to wake up and start producing their own electrolytes so that's why I got sick. Well, my rheumy didn't agree and said that I had a virus.

Anyway, since then this latest flare up has gotten worse, and I went from 8mg of Medrol to 24mg of Medrol. I am having to take Tramadol for pain because ibuprophen, Tylenol, advil - none of them work. The Medrol is starting to effect my mood. I feel so depressed because I feel like my poor fiancé is having to take care of me and I hate that. I am a strong independent woman, and I hate feeling so sick!

I hate having to sleep during the day, or rest. I had to withdraw from school this semester because I had missed to many classes, and I just feel like this lupus is taking over my life. My fiancé is always telling me that this flare up will pass and I will get better and be back to normal soon, but it's so hard to believe him. I can't sleep well, have no appetite, can't go to the gym. I'm in pain so much of the time. I'm just so incredibly frustrates at this point. I'm keeping up with the house work, and things like that, but finding it harder and harder to remain positive.

Anyway, I'm sorry that I seem to be complaining so much. It's just how I'm feeling and have been told to be honest. I hope that I'm able to find and give support here.

Love to all,

Liz

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Hi Liz,

I don't post very often but read a lot, and i can tell you, the folks on this site are very supportive and knowledgeable. Just tuning in every couple of days to see what everyone is up to and feeling and experiencing makes me feel less lonely on this confusing path of aches and pains and exhaustion. I wish you well, and encourage you to keep showing up here. Over time, you will discover things that help you understand your own symptoms better.

Blessings,

Sharon

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Hi Liz, so sorry you are going through so much at such a young age. I know it just seems so unfair!

There are many on here who can give you great advice. I am on Plaquenil and vicodin I am thinking I need more of something because I go into flares so easily. Thankfully I go to the doctor on Monday. I also take Cymbalta that helps with depression and pain. My spinal surgeon wants me to have neck surgery to take the pressure off my spinal cord, soon! Then we will do my spine someday in the future! So we all have a variety of issues, you just have to keep trying different ideas until you can maintain. We each have to find a new "normal".

Welcome to the site! Being a weekend you may not get as many responses as you hoped, but hang in there!

Hugs,

Geneva

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Hi Liz, so sorry to hear what you went and are going through. I can sympathize with you because like you, I was also in a very bad relationship which was very stressful. After I finally left my daughter's father (and that was in 2005) a few months after I started having bad joint pains, loss of appetite, losing weight and at one point of time I couldn't walk or even move off the bed. It was so bad that my mom had to lift me to the bathroom and bathe me. I eventually went to my GP who ran all kinds of test and finally admitted he didn't know what was wrong, so he referred me to my rheumy. I was then diagnosed with lupus and she said the stress I had experience proved too much for the immune. I cried for days, all the while asking myself why me? why didn't he get lupus, why me? All said and done, its here and not curable so all one can do is try best to manage with it.

It is not an easy disease to live with especially when you have other diagnosed diseases also. Plaquenil is supposed to help a lot with the fatigue and joint pains providing you can tolerate it. Try to include multivitamins daily and see if these help with the energy levels. Stay positive, hope you start to feel better soon. Big Hugs!

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Hi, Liz. Welcome to a wonderful, supportive, and understanding community. You’ll find, as I have, the more you share, the more feedback you’ll receive, the better you’ll feel, at least mentally. I can almost guarantee everything you’ve gone through and continue to go through has been experienced by someone on this site. I encourage you to keep sharing openly and honestly without fear of being judged. We’re all in the same boat, more or less, and are here to show our loving support and share our experiences. That being said, thank you for your introduction and for being so candid.

I’ve had lupus and Sjögren’s syndrome and fibromyalgia (just to name a few) for over a decade. I’ve tried all kinds of medications and I’m currently trying to taper down on the prednisone while having just started on methotrexate. I also take plaquenil and tramadol, neither of which seems to do very much for me. Yet, I continue to take them in fear of how I’d feel if I didn’t. Perhaps they’re doing more for me than I’m giving them credit for. Anyway, I, too, am frustrated by the debilitating pain and flares. I feel guilty having to ask so much of my hard working husband. And I, too, am on disability. I fully understand the exhaustion and other symptoms as well. All I can say is to try to hang in there and don’t give up. I suggest reading the links on this website about lupus and join the Sjögren’s group. Keep posting and reading and hopefully you’ll discover some answers and good, understanding friends.

Congratulations on your engagement and for getting out of an abusive relationship. I’m sorry lupus came into your life as another stressor.

Unless I read your post incorrectly, it sounds like your rheumatologist was more concerned about being right than he was with your health. You may want to get another rheumatologist. I know that’s easier said than done. It just sounded from your hospitalization that your rheumatologist really wasn’t on the ball. There’s nothing wrong with getting a second opinion, I recently did. I’m not saying to get a second opinion for a diagnosis, but for a treatment plan. From my second opinion, I learned my New York doctor that I’ve seen since the onset of my lupus, was on the same page as my second opinion doctor in Boston. If anything, it made me feel I had a little bit of control with an otherwise uncontrollable disease. See what others have to say.

I apologize for the lengthy reply. I just want to welcome you, let you know you’re in a good, well meaning, understanding and supportive (and knowledgable) community. Please continue to keep us posted. I will pray for you.

Kim

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Hi Liz, welcome to the community. I’ve only been here a month and I must say you’ll find a lot of support here. I’m sorry to hear about your recent flare; I hope that it’ll soon pass. Stay positive and remember that you’re now apart of a community with amazing supportive people. Best of luck and I hope you feel better soon.

Brittany

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Depression is not uncommon with this illness with or without steroids Why not consider treatment for depression?

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Dear Liz,
What a brave woman you are! Congrats on your new love! The beginning of the diagnosis can be very hard. I was diagnosed in 1987 and I am 44.
Reaching out is brave but also I think so beneficial! I have gotten a great deal of support from the wonderful folks on this site . I hope you stay in touch and am thinking positive thoughts for you! Good luck and welcome!
Eva the jammin girl

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Welcome Liz!

Bless your heart.....please take one day...one thing at a time. This is the way it is with our illnesses. I've lost so much with SLE, but I've gained so much in return....I don't take anything for granted. Let your fiance be there for you...he wants to assist you because he loves you! Do what you feel like doing each day. My heart and prayers are with you!

Lori

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Hi

Sorry to hear what you're going thru. We are almost neighbors/ I live in Nashua NH/ Maybe you got rid of a large piece of stress in your life. It sounds like you have caring finance. You learn what you can and cannot do. I am not real sick-I was diagnosed with SLE 14 months ago. I'm lucky, my biggest issue is fatigue. now that I am on plaquenil my mouth sores and hair loss is much better. I rest/sleep 15 hours a day. I hate it. I've been active all my life. I have a great husband, i"m lucky. Stay positive You will learns what your body will and will not let you do. We're all here for you. You can vent and complain any time you want to.

Cindy

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Hi Lizzie! Welcome to the group. I think you will find the love and support you need here. Everyone has different experiences, but I have learned so much just "listening" and knowing I am not alone. You are not alone either. You are very blessed to have such a caring fiancé. ... Fight the depression as best you can and do not let the disease control you. We all fight the same battle. You are in the right place. Big hugs, Dee

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Lizzie,

I am sorry that you are having such a difficult time. Being diagnosed at approximately the same time, I can tell you that the first year is very much a time of finding what works for you and you alone. No two lupus patients have the exact same symptoms...I have found this out the hard way. It's very important that you follow up with all of your doctors and also important that you are very open and honest with your rheumy. He/she cannot help if they don't have all of the information. No symptom is too small. This disease changes constantly and you are as important to your recovery or even just your stabilization.

You will find wonderful, knowledgeable people who will always be there for you. Don't hesitate to ask questions, share your stories, or share what may or may not have worked for you.

There are also very wonderful groups that you can join. Women's, health, art, and one that I always recommend the tab marked "overview of lupus" It's incredibly informative.

Feel free to contact any of the moderators or befriend others on the site. We are all lupus sufferers so we truly know what you are going through.

So glad that you are here.

Hugs and Health,

DeAnne

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WELCOME to the Family of Living with Lupus!! Here you can relaxe and feel Free from your worries and stress! We are here for you to relate to when others don’t . I have been a member for 3years, and find myself at times responding back to many that are in different places around the world-"we are Never alone, there is always some one online. So get comfortable and enjoy. And once again Welcome to the family of Living with Lupus…Beverly L.

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Hi Liz,

Good for you for posting and introducing yourself, that is a positive step. I'm sorry you're feeling depressed, and you had to withdraw from school, but you have to take care of yourself first. You've gone through a lot in the past year, give yourself time to heal from all of it. Rest when you need to, and I see a counselor for the depression and emotional issues. The first year after diagnosis was hard for me to, but now I'm looking for full time work again, and feeling so much better. I had my Vit D checked after Ann suggested it to me, and I was very deficient. My rheumie also concluded that my fibro was the bigger problem for me right now, and I started Savella which all helped. You don't have to accept that how you feel now, is how you'll feel tomorrow.

Hugs

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Hi everyone! I want to thank you all so very much for your kind responses. Your words mean so much to me. Each and every one of you who have taken the time to respond to my post are so sweet, and it mean so much to me!

I am realizing this is a very special community, and I will be able to receive and hopefully eventually give so much support here. You all have given me hope, and I can't thank you enough for that!

I am so sorry that you all have to struggle so much as well with this tough, horrible disease but it sounds like you are finding ways to really cope well with it. This really gives me strength and hope I can too!

Thank you for your kind responses! I am really going to look for a therapist to help battle the depression, look into massage, and work on some guided imagery too.

Hugs to all!

Liz

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Liz, i would love to tell you that it gets better. I think what I have to improve on everytime I get a flare...... that I could be worse, always worse.

Right now, I have been dealing with a flare lasting 9 weeks already. I keep on developing one thing on top of another. Started with pleurisy, than progressed to lung infection (hospitalized for 6 days) and after that, developed pericarditis. Have been on and off Steroids 4 times in the last 2 months.

Sometimes I just have a good cry.... Then I pick myself up... (meaning by adjusting my attitude.)

and fight everyday for the best part of me to come out as well. You will be alright. Just make every day count.