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Lupus and Sjogrens

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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 once 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 due to discomfort. 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 be hot but 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 and 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. Nor did I notice the bruise looking rash on my upper thighs. Well...one led to 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...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
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First Helper TheOddGirl
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replied June 5th, 2012
Bri,

I also have Sjogren's and systemic lupus. I also have little ones (3 of them). I have had a hard time dealing with this since it hit me hard about 9 months ago.

Some things that are working for me are: realizing my limits and not pushing it (listen to your body!), I take Restasis for my eyes to restore eye moisture, I take Evoxac for moisture everywhere (especially helps dry mouth), and plaquenil to stop the progression of both the diseases. Have they given you an alternative to the plaquenil since it caused you blindness?

If you have RA (rheumatoid arthritis) you would benefit greatly from whatever medication they use for that. I don't have it, but I do get the weak and painful hands like you. I drop things and can't drive for long because my hands form claws and burn so bad.

You are very lucky all the ibuprofen didn't damage your organs. I am happy you have made such changes to your life Smile

Maybe you could go see another rheumatologist for a second opinion? Maybe they could do some more tests to see if you have any other autoimmune diseases. Unfortunately it is very common to have more than one (you have 2 already) and others may be brewing. If you are positive for any others, proper treatment may make you much better.

Also, have you by any chance given any thought to post traumatic stress disorder? Being as sick as you've been as a child can definitely cause long term PTSD. I have that as well (not from childhood sickness, but childhood abuse) and I have a lot of unexplained symptoms that are caused my the PTSD, including periods of not being able to move my arms or legs.

I hope this helps you some Smile
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replied June 6th, 2012
How nice to hear from you! I am sorry you are walking my shoes. Luckily my sjogrens only comes out when my Lupus is sleeping completely, dry mouth is the worst and the nose bleeds I get ruin plenty of sheets.
A second opinion would be grand yet there is just one more rheumo and his ratings are horrid. Surely there are more yet not covered with my insurance.
I decided to not try anything else unless my kidney/liver changes. If they would be damaged I will go on some sort of long term med again. Right now I rather treat the symptoms. That at least does not take 6 months to build up in my system. I just fear that would cause larger damage (like my eye) then pain meds.
Today my hands are killing and just like you I can't really drive longer then 40 minutes tops.

PTSD...no idea how something like that would be diagnosed? I remember them saying that I might have TMS...turns out it isn't that. Or maybe it is as well. After all, it can not be tested for.

Thank you so much for writing me. Smile

Best Bri
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replied October 13th, 2012
Many people diagnosed with Fibromyalgia really have sjogrens. Now that my eyes are dry and painful, I do believe I have sjogrens, though, my mouth is not dry.
I began helping myself by changing my diet. I also use Oxycleanse to clean my bowels. I no longer take anything but thyroid pills, but recently found out my right adrenal had a mass that hemorrhaged (I don't know when or how I survived), so I began looking up the aftermarket report by the FDA on drugs that cause certain diseases. Interestingly, synthroid causes adrenal disease, so now it's either the pituitary or hippathalmus (brain) that isn't working.
So, when you have autoimmune diseases, they seem to spin out of control. But, remember, a lot of illness Doctors say we have are made up, as they benefit financially, and keep the big pharma happy. Best to get rid of yeast, keep bowels clean and eat real (non-GMO) foods, and stay off medications by treating them naturally, but I'm one to talk - I should have done all the above things before my gallbladder was removed. Hard to do the right things when you are in a crisis medically.
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