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Lonely
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jennkz posted:
I'm 38yrs old. I was recently told I had systemic lupus * not sure if I spelled that right*.
I was told over 6yrs ago that I had Lupus but it was a different type and it was only going to cause me skin issues, such as rashes. I knew to stay out of the sun. I honestly thought it wasn't that big of a deal. I ignored what they told me to do. Went out in the sun, never wore protection on my skin. I just dealt with the rashes and went on with my life.
In 2010 I became pregnant with my 3rd child. I really did not know anything about Lupus and had no idea that it could cause problems with my pregnancy. I had my son 1 month early and was on bed rest the entire time. I had never been so sick in my life. I remember I started losing my hair and I had no idea why it was happening. I thought it was from the pregnancy. None of my dr's at the time were even worried about the Lupus, never spoke of it.
About 3 or 4 months ago I developed lumps that were painful and itched very badly. They were on my legs and ankles. I had thought it being summer time that I had been bit by a bug. When I realized the lumps were spreading and my ankle was swelling I called my Dr. My Dr had me come in and thought I was having an allergic reaction to something. I knew she was wrong but had hoped it would go away. I woke up the very next day with a lump on my other ankle and it was the size of a golf ball. I called my Dr and went right in. I could tell she was concerned and she told me she had no idea what was going on but thought that I should see a specialist for my Lupus. That was when the panic set in for me. No one ever acted concerned about me having Lupus. I never thought it was anything I had to worry about. I saw a dermatologist and the Rheumatologist and after having a skin biopsy I was told that that I had SL. The news hit me like I had just been told I was going to die. Never been afraid like that before in my life. I am always broke out in a rash on my legs, back, arms. I rarely get any type of rash on my face. I still get the lumps and they hurt bad at times and they itch worse then having poison ivy. There is nothing they can do. Steroids did nothing. The medicine I was given, which I can't spell it but it starts with a P, I can't handle the pain it causes my stomach. So basically there is nothing they can give me. I am always wondering what is going on inside of me. I know how horrible I look on the outside so I wonder how bad I am in the inside.
I'm sad, angry. I feel like crap every day all day. If it's not all of my joints hurting then it's my stomach acting up. I was told 9yrs ago I had IBS. I think now it was the Lupus. My relationship with my kids father is ending because he can't handle me being sick all the time. I have no friends. I have no social life because I'm too sick to leave the house. My kids are all I have. I don't work. I'm on SSI. Computer and my phone and tablet are all I really have as far as communication with outside world.
I have stayed away from message boards for support. Other people talking about their stories have scared me. Worried I will go through the same things that they describe. Honestly I don't know what to do. There are no support groups or any type of agencies in or around my area I can go to. I feel alone, and very angry.
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Magsp32 responded:
I understand your pain. I was formally diagnosed in 2010, but the doctor who diagnosed me is no longer in practice. So, I have to start the process all over again (which entails yo-yoing back and forth of doctors saying I have it and doctors saying I don't). I have to keep my hair short (shaved short) because it falls out too often (thank God for wigs!!). I am now a vegetarian ( because of the Lupus, I cannot process meat or fat), and I cannot do hardly anything because I hurt all the time. My friends have stopped being friends with me because I am "sick all the time." It can be lonely, but you can get help here. If you need someone to talk to, email me at magsp30@yahoo.com. It will get better, or better still, you will learn to be better....
 
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lisatru62 responded:
It seems like you have a lot going on in your life in addition to the Lupus. People can be intolerant of those who have chronic illnesses. My parents keep thinking that I'm cured because I'm not going through a flare. You can also look totally healthy on the outside but be a total wreck on the inside. I've lost 40 pounds since I started on medication and people say I look great, bummer, I must of been really fat.

You need to find some medications that work for you. Working with your doctors and using discussion boards like this one can give you ideas to bounce off your doctors. Never let them give up and please don't give up on your self. It took me ten years to get a diagnosis because they all thought it was nothing. I kept after them because I knew something was wrong. I now have kidney and stomach issues but the rashes and lumps are clearing up.

If they had found my lupus sooner I maybe heathier today. This is why it is so important to keep at it and work with your doctors to find a solution.

Good luck,

Lisatru62
 
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lupylisa44 responded:
Hi jennkz

I am sorry you are going through so much and have no support from your friends or family. Finding out you have lupus is very scary and dealing with it from day to day is very hard. It is so important to have someone to talk to about what you are feeling and going through. That is what we are here for!!! This is a great place to come when you need support ot just need to vent.


Don't let other peoples stories scare you! Everyone with lupus is different, but you can learn alot from other peoples stories and advice. Where do you live? Have you tried to contact the Lupus Foundation or the Lupus Alliance to find out if there are any support groups in your area?

http://www.lupus.org/newsite/index.html

http://www.lupusalliance.org/

One very importatnt thing when you have lupus is to educate yourself. Knowledge is power!!! There is a ton of really good infomation in the tips and resources sections of this board (on the right hand side) The Lupus Book by Daniel Wallace is what we consider to be the best book out there. There is another book called Lupus Q&A Everything you need to know by Robert Phillips and Robert Lahita. I suggest you read them both and have your husband read them to so he can better understand what is happening to you!

Is the medicine you were talking about called Plaquenil? Have you tried taking it with food? It can cause stomach upset, but it usually subsides after taking it for a while. Plaquenil can also take up to 4 months to start working. It is important that you continue taking it consistantly for it to work. There are many other medications that can be used to treat lupus. You need to talk with your doctor to find something that works for you.

I have been living with lupus for 30 years and have had many difficulties and have come close to death on more than one occasion because of this stupid disease. But, despite it all, I have had a very good life and you can too! As difficult as it may seem right now, it does get better! Lupus is a disease that can come and go with flares and remissions. Having a positive attitude, is crucial! Hang in there! Don't give up, Fight!!! Be a lupus warrior, not a lupus victim!!!

Any time you need us, we are here. I visit this board at least once a day!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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jennkz replied to lupylisa44's response:
Thank you so much for responding. I have had so many terrible times with my stomach and I'm so sensitive to medications that I don't even want to try anything new. Seems like every time I try to fix one thing a million other things go wrong. Yes it was Plaquenil and I did stop taking it. I am not on any medications for the Lupus at this time. My main complaint when I went to the Dr's was the lumps I was getting. After trying steroids they came to the conclusion that there were no medications they could give me to help. They thought maybe a cream would work but it doesn't. I have come to realize that this is just something I will have to live with and deal with. My stomach issues are really another one of my main issues but after over 10yrs of trying everything you can think of nothing has helped. I'm just taking things one day at a time. I just purchased a couple of books on Lupus. I'm trying to do as much research as I possibly can. If there is any way I can help myself without taking medication then that is really where I want to be. Thank you again.
 
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lupylisa44 replied to jennkz's response:
Have you seen a Gastroenterologist? If you are having that much trouble, it might be a good idea.

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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jennkz replied to lupylisa44's response:
yes I have been to many specialists for my stomach. I was told I had ulcers but I took the medication and have had no problem for a long time now. I have had many tests and they all said there was nothing wrong. I've been going through this for so long I have accepted that there is nothing that will change. I try not to worry about tomorrow until it gets here. It's scary and very painful.
I have a hard time even talking about what I go through with my stomach because it's the worst pain I have endured.
I was in labor with my daughter for 52 hours and never had any drugs and that was a cake walk compared to what I go through in the bathroom.
 
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nancyj95 replied to jennkz's response:
I, too, know what you are going through. Although diagnosed
about 15 years ago, doctors had been telling me since I was a child that the pains weren't really there (I'm 70 now). I even had my gall bladder removed as a result. After the lupus diagnosis I was found to also have lupoid hepatitis, hypothyroid and most recently gastroparesis which was causing most of my stomach problems. That last one was only diagnosed last year, so there were a bunch of problems in-between. You really have to find a doctor you have confidence in and work with that person. For support, we are here and willing to listen and make suggestions. I know I'm feeling a bit like you right now with back fractures from being on steroids too long. Good luck and just put one foot in front of the other each day. It WILL get better-maybe not as quickly as you want, but it will!
 
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Healthyannie responded:
Please don't stay away from message boards. By joining in you make people aware and you help others.I am not a Lupus sufferer but I have met so many people with undiagnosed Lupus in my life ( I run my own health business). To me it is still unbelievable that a lot of people are undiagnosed.
Your condition sounds very much like Lupus and honestly I wish I could give you more support. My lecturer called Lupus the great mimick and it is a very true statement.
I written an article about Lupus and if you would like to have a read it might give you some further insite into Lupus.
Click here to read my article. If you would like to contact please do. Take care Annie
 
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Healthyannie replied to Magsp32's response:
Hi Mags,

Have you ever tried any natural remedies for your Lupus??
I love the statement you will learn to be better . . . it is so when it comes to chronic conditions. Take care Annie
 
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lupylisa44 replied to Healthyannie's response:
Hi Annie

I just read your article. One thing that you forgot to mention that really benefits people with lupus is Vitamin D3. Because most people with lupus don't go out in the sun, research has found a severe lack of vit. D in people with lupus. Vitamin D also helps greatly with fibromyalgia! It is probably one of the most important supplements for lupus.

I am all for using natural supplements and natural treatments to help with their lupus. But, lupus patients need to be very careful not to take things that BOOST the immune system, for this could cause lupus to become more active. In simple terms, lupus is an overatctive immune system and the goal should be to subdue it, not boost it.

Also, your article states "Lupus is also very similar to Raynaud's disease." This is an incorrect statement. Raynaud's phenomenon/disease is a condition that causes some areas of your body , such as your fingers, toes, the tip of your nose and your ears, to feel numb and cold and turn white or blue in response to cold temperatures or stress. In Raynaud's disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas. Raynauds is a very common secondary condition in people with lupus, but the symptoms are not similar to lupus.

There is no single blood test for diagnosing lupus. Systemic Lupus Erythematosis (SLE) is diagnosed using 11 criteria. If you have 4 out of 11 it is likely you have lupus.

  • Face rash, which doctors call a malar rash, that is butterfly shaped and covers the bridge of the nose and spreads across the cheeks
  • Scaly rash, called a discoid rash, which appears as raised, scaly patches
  • Sun-related rash, which appears after exposure to sunlight
  • Mouth sores, which are usually painless
  • Joint pain and swelling that occurs in two or more joints
  • Swelling of the linings around the lungs or the heart
  • Kidney disease
  • A neurological disorder, such as seizures or psychosis
  • Low blood counts, such as low red blood count, low platelet count (thrombocytopenia), or a low white cell count (leukopenia)
  • Positive antinuclear antibody tests, which indicate that you may have an autoimmune disease
  • Other positive blood tests that may indicate an autoimmune disease, such as a positive double-stranded anti-DNA test, positive anti-Sm test, positive anti-phospholipid antibody test or false-positive syphilis test
  • Lupylisa
    With love, with patience and with faith, we'll make our way.
     
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    Lupycakes responded:
    Hey Jennkz and welcome!

    I'm so sorry you are having so much to deal with right now. Lupus can really suck at times.

    I have a few thoughts about your stomach troubles because I have the same thing. I use to tell my docs it wasn't IBS ... It was ABS ( Angry Bowel Syndrome) mine wasn't "irritated" mine was down right pissed off!

    Then I tried going gluten free - even though I do not have celiac disease- and have been amazed at the difference!! Not just with the bowel problem but also with the joint pain. I really suggest you give it a try - you'll know if its working or not in just a few days and it won't hurt anything to try... Costs nothing to do... Dr.V has some discussions on here ( upper right corner of this page) about gluten sensitivity.

    Please look into it and keep us posted on how you're doing.

    Lisa aka lupycakes
     
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    ssh49tn responded:
    I can understand your frustration! I was just diagnosed with lupus in August of this past year, & my doctor doesn't seem too concerned about it. It's like it's no big deal to him, & I should just learn to deal with it. Grrr! I don't have lumps, but do have the bumpy rashes in different areas on my body. So far, I've managed to not get the one on my face. I'm on Plaquenil, but it doesn't seem to help a whole lot, at least not yet. The doctor just says I need to be patient, give it time to work. Meanwhile though, I have been through an itching HELL. So am on 5mg of prednisone daily. That helps keep the itching down, but I've gained weight from it. And, I don't care too much for message boards either. However, I do like this site, plus found one on Facebook called Patients Like Me, which is mainly for lupus sufferers. Also, if you're interested, if you're on Facebook, I'll look for you, & add you as a friend, & you can unload to me any time. Private messages don't show up for anyone else to read but me. You do need to at least be able to just unload to someone now & then. God bless, & I WILL say prayers for you!
     
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    KRShipp responded:
    I have had many stomach problems for many years, and the doctors kept telling me there was nothing wrong with me, they finally said it was all in my head. I did a lot of research, I started to follow a Candida Diet, it helped and my digestive problems slowed down. I also found out that I need to be aware of what I eat in a three day period. I still have problems if I eat too many wrong foods within a three day period. If I eat something bad one day I'm okay, but if I eat something bad more than once within three days my stomach and digestive track goes crazy and I pay for it.
    There are a number of things that can be your trigger foods that cause you problems, you will have to try to figure which foods you need to stay away from and maybe you can start to feel better and do better.
    I had Lupus for over 20 years without being diagnoised, now I know it wasn't in my head the doctors just didn't know.
    I hope with all the suggestions you are getting from this site, you start feeling better, remember Lupus can go into remission and you will start feeling better.


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