View Full Version : Lupus and Sjogrens

05-30-2012, 03:01 PM
Good Day, I am unsure why I post this...I am sort of hoping to find tons of friends that walk my shoes I guess.

I am a 28 year old mother of two. My children are 5 and 3 years old. I am married. Happily married. House, dog...all perfect though my life was not always like this. I am basically sick since the age of 4. I always had pains. Pain in my arms and head that I could not explain at such a young age. Surely my parents dragged me from one doctor to the other yet non could find anything. I remember having cables attached to me, being poked with needles. Countless diagnosis's that where all wrong. Countless meds. After a while the doctors said that I am just out for attention. I did not care what it was just wanted the pain to stop NOW. So my parents started to give me normal OTC pain pills. By the age of 8 I took them myself (without my parents knowledge). My the age of 12 I was at 20 ibuprofen in the morning just to start the day out of fear the pain would come. I made a trip to the German Pharmacy daily (different ones mind you...I am from Germany so all works a tad different). The older I got the more pain joined my life. I started going to more doctors. One mentioning rheumatoid arthritis. I showed him my 16 year old middle finger and walked of. After all...I am 16 and not 80 years old (my thought process was "you must be old to have this disease"). I then had to detox after trying to take my life. My pharmacy and doctor would not give me my good stuff (vicodin) and I was in SUCH agony. I was in the clinic for 6 weeks to detox. It was horrible.
Anyways...I started to be a bit better and also found a magic plant to help with my headaches and "arm" pain. O_O I did this basically until I met this soldier (my husband) who told me that if I want to be with him I would have to stop the pot due to him getting in trouble. I started some painkillers again but took them as I was suppose to...oh and I cut myself to release some "pain". I also went to a shrink (I think I helped her more then she helped me). So you see, I tried.

Then I got pregnant and EVERYTHING changed. I had a hard pregnancy but did not take ANY painkillers due to me being afraid of messing up my baby. We got married, my son was born and he was perfect. I still had problems which I fixed with pain pills. With that pregnancy I gained 60lbs which left me at 200lbs. Being big as that made everything worse. I lost some of it and with my second pregnancy I gained 17lbs. I did it right.
After being done with making babies I was also done with being in pain. I went on a health spree. Started working out (which became my new drug) and ate better. Though I did not have an idea about nutrition. I did what most people do. High protein, no carbs and moderate fat. In 7 weeks I lost 32lbs.
But then I got sick...very sick. One of my lymph nodes in my neck got infected...all of my other lymph nodes started to swell. It was painful. After they fixed my infected lymph node I noticed that I was hardly able to open doors by my self...little tasks like pouring coffee looked silly when I did it. I used two hands, I wrote different. I never really noticed I did these things. I did them due to discomfort...for me they where normal. Others called me a nut. Once I had to call my son because I was not able to open the garage door from the outside. He, of course, opened it with ease with his little 5 year old hands. Peeling an apple took me 20 minutes (my kids would then steal it and eat it within seconds). Then my feet started to hurt. They would feel hot but where/are cold to the touch. Walking would feel like walking on needles. My groin lymph nodes had the size like little eggs. I got pregnant twice and lost it twice. And then one morning it took my husband two hours to get me to wake. He had to rub me everywhere. Massage my feet, hands and arms while I cried badly. He still had to help me to the loo. That was kind of it. I went to my house doctor who pointed out a funny looking rash in my face. It looked like a butterfly. With all the pain going on I did not even notice that...I had no time to gaze into a looking glass so how could I notice a rash? Nor did I notice the bruise looking rash on my upper thighs. Well...one test after another. I told him how I was always excused at gym. "I don't sweat and pass out a lot". One ANA test and several other tests later, after 25 years, I was finally diagnosed. Lupus and Sjogrens Syndrome. Say what?! The doctor is sure that I have this since I am little but me eating what we humans are not build to digest, in massive amounts, made my immune system go NUTS...getting the infection did not help. First real flare-up happened. I was put on all sorts of medications. Prednisone during a flare...plaguenil which I had to stop because I lost sight in my right eye, trazadone to be able to sleep (stopped that as well because it made me feel worse in the morning), flexeril (stopped that too) and tramadol for pain (loving it). Tramadol scares me though. Yes I am in a lot of pain most days and sleeping? Get out of town. I am surprised I knew how to spell it just now. But tramadol helps make the pain go away...let's me enjoy sleep. BUT if I forget to take it I get withdrawal symptoms that almost top my normal flare-up symptoms. So what to do? Deal with it? Have Lupus and such and just give up? Meaning being hooked to pain pills? There HAS to be another way. I tried the Gerson Therapy. I am sure it would work...but it is impossible to eat/drink this way for the rest of my life. I read of people with my illness and they take way more pain pills then me (I am taking 2-4 50mg's in a 24 hour time period). What do you all take or do? I have to function...my husband has a great job so when I am not able to wipe my own bum he works from home and cares for the kids. BUT, that is why I am a mom...I like being a mom, I like my kids and would like to be more for them then this half dying 117lbs being in bed. So what do I do? Surely, as you all know, we get liver/kidney tests every 2 months and so far I am good. I don't even look sick (haha!). So why do I feel guilty? I guess because I was addicted before. What do I do??!! I tried acupuncture and other "tree hugger" stuff. I am 95% vegan...sometimes meat is a must. It makes me feel strong. I don't smoke, I hardly ever drink. I do everything right! I even keep a food journal to make sure I only eat anti inflammatory foods. O_O What should I do? What do you do???

I hope this was not to long or hard to read. My apologies on the gramma. It is my second language and it is only 8.35am in the morning.

I was diagnosed 4 months ago...

Best Bri

05-30-2012, 03:24 PM
Oh my goodness - you have been through the wringer!!!! I am so sorry you've had such a rough time with all this...but sadly there are many with similar stories. It often takes many years to get diagnosed properly.

It sounds like you are motivated and willing to do what you need to in order to get help and try to get as healthy as you can be. You have had to be essentially on your own with this for many years and try a lot of things in desperation to help yourself....this is a failing of the medical establishment, not of YOU.

My guess is that now you have help, things will change. I hope so! Is your doctor somebody who seems knowledgeable and is willing to talk to you openly and honestly? Make sure you keep a diary of symptoms, and DON'T CHANGE YOUR TREATMENT without talking to your doctor first. It's really important that you trust EACH OTHER - it will be a long relationship between you two, managing this disease - it's really essential that you communicate well with one another. Sounds like you have never had this kind of supportive, trusting relationship with any of the medical providers you have seen over the years - I hope things will be different now that you have a diagnosis.

The diagnosis is only the first step, though - a CRITICAL one, for sure...but even WITH the diagnosis, understand that it may take a year - or more - to find what combination of treatments will work best for you. Every person who has these diseases is different - there is no "one size fits all" approach - so tell your doc what's working for you and what isn't. Include information about diet and supplements and so on. And be patient. Some of the medications (Methotrexate, for instance) can take up to 6 months to become fully effective, and can have side-effects at first. If you can make it through the first couple of months, often the side effects subside. But if you really can't tolerate something, don't just stop taking it - tell your doc and ask for alternatives. Don't risk a flare.

I have Lupus, Sjogren's, APS and Raynaud's, and now they're saying possibly Graves. Oh, and I lost hearing on my right ear due to autoimmune issues. Plaquenil worked well for me after about 6 months, but then the hearing loss happened...so now I am building up my Methotrexate dose to 25mg/once a week, and they are trying to get me off Prednisone. I am lucky - I have not had many side effects. I don't know if it's because I just don't (because of luck), or if it's because I am pretty careful about taking very good care of myself as far as rest, food, lots of water (and I mean LOTS). Based on some blood tests, my doctor put me on a wheat-free diet and a number of vitamin/mineral/fish oil supplements, and that helped me. It doesn't help everybody, and it doesn't cure anything - but it did make me feel better. But it was really important that I worked WITH my doc on all that. Now I feel like he really listens to me and knows I won't switch things up without consulting him. It's hard for him to treat me if I am going off on my own with things. In return, he takes me seriously and works hard to find solutions.

Some doctors are just ignorant, or jerks - I guess you know that all too well. I really hope you have finally found a good one who will help you. And it sounds like your family is also a source of strength, inspiration, and support - that is wonderful. They must be so pleased to finally have some answers, too!!!! I bet with your determination and this new information and your "team", you'll find a "new normal" amidst all the symptoms and tests and medications and so on.

People here on the forums are wonderfully helpful....read through old threads - I have learned so much here.

Welcome - I am sorry you have to be here, but glad you found us. You are not alone!!!!

05-30-2012, 04:10 PM
Oh my gosh, that surely is a lot you got going on right there! Thank you for the warm welcome though!

Do I trust my doctor? Not at all. Once he diagnosed me he gave me a piece of paper with info about the disease and sent me home. Surely he is nice AND takes his time but he also never asked me about my diet or other habits which to me is quite strange. Finding a new rheumo? Might be a pain...I think there is one more doctor around that my insurance takes and he has bad ratings. Most of the things, besides check up for the disease, are done by my normal doctor. He is awesome!
Fish Oil...I should add that for sure. I do take good care of myself as well but I think I am just unlucky or a weakling when it comes to side effects. haha
Adjusting is hard but I believe I am getting there. I just feel rather alone. Not many people get it.
I am going through older threads already. Do you take anything at all for pain? That is something that scares me the most. I found something but are so afraid to get dependent on it.

Again, thank you for the welcome!


05-30-2012, 10:02 PM
Hi Bri,
Welcome to WHL. I also have Lupus and Sjogren's, with some symptoms of RA and Psoriatic Arthritis thrown in. Like Sleepy, I've lost some hearing due to Autoimmune Inner Ear Disease. I have the added fun of having Spasmodic Dysphonia (vocal cords spasm uncontrollably) and now I'm going to be evaluated for Spastic Paraplegia (another dystonia - this time it's my leg muscles).
Luckily, I tolerate Plaquenil very well, but I'm like you - I'm very sensitive to many drugs. I'm totally allergic to any opioids - I can't even eat anything with poppy seeds - my throat starts closing off. I tried Tramadol once, and reacted violently to it. My hubby researched and found that it's an opioid.
I can't even take an anti-spasmodic for my leg spasms - I over-reacted to that, too. The only pain pill that I can take is an occasional Aleve, but I'm careful about those, since they tear up my stomach. Like you, pain is my constant companion.
Are you still living in Germany? My daughter and her Airman husband are leaving to live at Ramstein Air Base in a week. She is excited and scared.
We can't wait to go there to visit them. We are military, too. My husband is also in the Air Force.
I'm glad that you have found us. I hope that we can give you some support and help you with dealing with these AI diseases.
Here are a couple of good sites for information about Sjogren's. http://www.sjogrens.org/ and http://www.sjogrensworld.org/index.html
Keep in touch!

05-31-2012, 04:38 AM
Hi Bri,

A warm welcome, from another German girl. I was born and raised in Berlin, came to the USA when I was 25, that was 31 years ago.
I also have Lupus, RA and Sjogrens.
Even though I have never been addicted to anything, I am always worried, when I take painpills that I might get hooked on them.
Right now, I am not on any meds, because I have to wait on the result from my liver biopsy, which was done yesterday.
I know that being without any meds is out of the question. I hope something can be done for you.


05-31-2012, 06:27 AM
Welcome Bri,

First of all, your grammar is as good as mine :)

You have been through so much. So many things that you talk about are topics that are discussed here daily like medication, others thinking we're INSANE :) and just a basic need to know that there are others out there who have been there too. I hope this forum brings you the support and empathy that we all need.

It's frustrating that you only have two options of which Rheum to go to. What I would suggest is spending a considerable amount of time on the internet learning about Lupus and Sjogren's. Every day I attempt to educate myself about something new. It's not enough for my to just know that I have Lupus.. I have to also know what that means for my body and what is the best way to treat it.

I've also recently decided to make some serious changes in my diet. I've been a vegetarian since I was 5 years old, but I also have a horrible sweet tooth. My doctor never discussed diet with me either (he just told me that some people think that garlic isn't good for those with autoimmune disorders). Are there nutritionists in Germany?

05-31-2012, 08:06 AM
Good morning everyone!

Thank you for all the kind answers. I am always surprised to read or see people that deal with the same/similar things. Makes me feel less alone!
I am in the States since 2007! My husband was also stationed in Ramstein. I can assure you your daughter will have a grand time.

If I could only take aleve I would go insane. They just hurt my tummy but don't really work for pain. :( I am sorry you go through so much pain.
We do have nutritionists in Germany but since I am here that should not be a problem. If I would have the time that is what I would study myself because there are way to many nutritionists out there that have learned the wrong stuff.

Funny that your doc just mentioned garlic. O_O haha. All in all most doctors told me ANYTHING that will boost your immune system is bad for me with Lupus and Sjogrens. I think that is doo doo. Surely in a flare it can't be wise...but my goal is not to be sickly for the rest of my life. I want to beat this thing. That is why I stay away from everything (food wise) that has more then 5 ingredients and don't do any artificial colors or flavors.

Debbie, I hope your biopsy comes out okay! Berlin ay? I was born in Darmstadt (Frankfurt) Ich vermisse es auf alle Faelle.

Time for my workout now. I feel okay today!

Best to all of you!

05-31-2012, 05:24 PM
We all seem to be walking in each other's shoes. No matter what size, male or female, we all share something. And we have the great chance to HELP each other- no pity parties, but solid support from someone who understands the mountains and valley we face AND MASTER as we go on this voyage together. None of us are alone, nor do we have to feel sorry, or why me. Why not me, I sure as heck am not alone on the trip. I am 64 and my fun ticket is not fully punched. The sun will come up and so will we.

05-31-2012, 06:51 PM
First I want to welcome you to WHL. We are so glad that you found us. Never say you are sorry for grammar. LOL English is my first language but some days my brain doesn't work and you would think I didn't speak the language either!

Everyone has given you good advice but there is one thing I really want to point emphasize. Sleepy mentioned above about not changing ANY meds or diets without talking to your doctor. I cannot emphasize this enough! If you don't trust your doctor then find a new one because it is really important that you have someone that you trust working on your behalf and helping you with the changes that need to be made in meds. Doing it alone can cause not only harm, but death.

Take care of yourself and we are really glad to have you with us!

06-02-2012, 05:39 AM
hi bri and welcome.
we all have similar but different (indervidual problems).

if yourprimary doctoris the one you trust the most.....
let him know that.
ask him to beyour main doctor.
ask him for his help.

it sounds like you know him well enough to ask that.
if he is as good as it sounds, he may be all you need.
(it sounds like he will know or learn what is needed to help you.)

i wish you well in your journey.
have you looked into the positive side effects of depression medication.
i say side effects... because quite a few of us have a need for them, but we are far from depressed.

i have a medical need for them, as my brain does not function as it should.
the medications that others have labelled as depression meds is what i need.

everyone of us have a different body... so it is possible that what works for me may not work for you.
but it is worth looking into.

i am happy that you are reading through the older threads.
they are our personal experiences with lupus.
we may not be doctors...... but we have learnt how to live with this !!!!!!!!!!

08-11-2012, 02:57 AM
Welcome, I am new to this site also and to my Lupus. I have a similar story as yours. I am on the methotrexate and a few others at the moment been on it for 3 weeks now and still the pain is not letting up. I know that the past 2 years for me has been extremely hard and lonely as for 1 of those years while the doctors where trying to figure out why I was in so much pain my husband was deployed for a year and it was just me and my 2 beautiful daughters. Reading the posts really help me on the sleepless nights that I lay in pain. Knowing that I am not alone in this and that there are others who are living through the samething I am. hang in there, it has to get better or at least I pray it does. And the people on here are so great and encouraging. Look forward to talking to you soon.

Ill be praying for you!