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kim,l
11-26-2008, 03:47 PM
hello my name is kim and i am a new member i have recently been diagnosed with lupus i have the extreme case i spent 4 months in hospital been diagnosed with the wrong condition they told me it was stress and ihad conversion disorder in other words in was all in my head the doctor said i had drug seeking rendency and i was really not in pain i had a fall due extreme pain in hospital and the doctor wanted to know did i throw myself on the floor for sympathy my husband tryed to convince them something was wrong but they did nothing finally they sent me home and i became worst they finally did tests and confirmed i had lupus but it was my gp that did these tests. some days it is hard to get out of bed the pain i feel is bad it is hard to walk showering even makes me tired going out in sun i break out in rashes even going shopping is real chore it has been a life changing experience it makes me so angry that doctors believe they every thing i hated being told it was all in my head i think doctors need more training in recognising lupus so this does not happen to someone else also could some give me some hints on what foods help and what foods to avoid thankyou for listening it has been so frustrating from kim.

cheryl_v
11-26-2008, 04:22 PM
Hi Kim, sorry you have had some bad docs. The nerve to suggest you'd throw yourself :roll: , please. I really don't have much to offer except hugs, and welcome. This is the best place, with lots of love, support, help and so much more. Welcome to the WHL family, always room for more :D . I love this place, been so helpful. Educational and emotional wise.

KathyW1958
11-26-2008, 04:41 PM
Hi Kim,
Welcome to the site. My name is Kathy and I also have SLE Lupus. I am sorry to hear the way they treated you in the hospital. For the doctor even suggest that you would throw yourself on the floor is really rediculous big time. I had terrible experiences with doctor for years due to their ignorance back in the 1970's and the 1980's. I nearly died at the age of 36 in 1996 before I finally got diagnosed and put on medications. What was strange is the Rheumatologist that diagnosed me told me that I have one of the most classic cases of Lupus that he had seen in years and that he believes that I have had it since the age of 5 years old. He was very upset when I told him how I had been treated for years and he told me that he has seen patients come to him that have been through the same thing. I think that is why there needs to be more awareness made about this dreadful disease.

Have they put you on medication yet? I hope that you get to feeling better.

Hugs,
Kathy

kim,l
11-26-2008, 08:51 PM
to cheryl thankyou for your kind words and quote i pleased to hear from people with the same condition it makes me feel alot better knowing people understand many hugs from kim :

kim,l
11-26-2008, 08:59 PM
dear kathythankyou for your kindness it has been difficult but i will be alright now that i know whats wrong i am sorry to here you had such a bad time too i hope you are feeling alright at the moment. yes they have started me on cortisone tablets i have noticed i am going to the bathroom alot and also i am a bit shaky i don,t know if this is normal but i have only been on themedication for 3 days i see the rheumatologist next week he has got me on a very strong dose as he believes i am having severeflare up worried about my kidneys and i am having trouble swallowing but i will get used to it i suppose many hugs and kind regards always kim.

Oluwa
11-26-2008, 10:03 PM
Hi Kim...

Hugs. It is not right for a person to be treated like you have...I am sorry that has happened to you.

Steroids can make you shaky, urinate frequently. Are you taking potassium pills?

From my reads...Foods to avoid..., avoid alfalfa sprouts is a biggy, can cause flares. Avoid fried, fatty foods. Sugar, sugar substitutes. Splenda is supposedly fine, as per my doctor. Reduce fat intake. Reduce salt intake. Eat a low carb diet, but high complex carbohydrate diet.

Complex carbohydrates are found in fruits, vegetables, nuts, seeds and grains. Green vegetables..Brussels Sprouts, Cauliflower, kidney beans, eggplant, lentils, tomatoes, broccoli, carrots, apples, plums, strawberries, grapefruits...and spinach and etc. contain less starch and more fiber. All grains include starchy carbohydrates. However, whole grains -- such as whole wheat pasta -- are better for you because they also have more fiber.

Increase calcium enriched foods.

Basically eat all things in moderation, avoid food that is processed or comes in a colorful wrapper..junk food. Eat fresh colorful fruits and vegetables. Eat fish.

If you are having kidney involvement, follow a low protein diet.

Ask your doctor about supplementing with Fish Oils, B- Complex, Calcuim and Potassium.

Hope this helps...

Hugs..keep looking for your wellness.

Be well.
Love,
Oluwa

cheryl_v
11-27-2008, 12:00 AM
Your welcome :D . Glad you found this place, you'll love it.

rob
11-27-2008, 07:42 AM
Hi Kim,

Welcome to our group. I see you've already met some of our other members. I'm so sorry to hear how badly you were treated. We hear stories of mistreatment by doctors here far too often. I agree that there must be some way to train the medical community to be more aware of Lupus, and to increase their knowledge. Someday hopefully it will happen. Anyway, you've found a bunch of sympathetic people here. We've all been accused of being hypochondriacs and having it all in our head at one point or another. Please make yourself at home!

Rob

KathyW1958
11-27-2008, 08:18 AM
Hi Kim,
I am glad that you are going to see a Rheumatologist. He may put you on plaquenil and start tapering off the steroids to allow the Plaquenil to kick in and work for you. It takes 3 to 6 months for the Plaquenil to really kick into your system and get to working for you.

I hope that you are feeling ok today. I am doing pretty good today. I am getting over a flare and a cold.

Keep us posted as to what the Rheumatologist does for you ok.

Hugs,
Kathy

sak
12-06-2008, 02:49 AM
Last year 07 i had a tingling sensation in both my hands and it progressivly got worse so i went to the hospital and they told me that i had a problem with my nerves so i went to see a nerve specialist and he told me that my thyroid was under producing so he put me on thyroixin for 30days and said that would sort it out,all along i wasnt getting better.So i decided to travel to the US and thats when i found out that i had Lupus by this time my health had really detetiorated.
This year in August i had a pain in my chest so i went to the hospital and the doctor toldme that linning of my lung was inflamed and gave me medication for it then four days later i didnt feel better at all so i went back and they said that i had pneumonia and again i was given medicine for that still i didnt feel well and i went back and this time they admitted me and they found that i had TB,it had gone on for so long that it had slightly damaged my lung.

sits_inthe_corner
12-06-2008, 04:06 AM
:( Sore to hear that sak

I'm afraid my faith in the medical community is badly shaken. I don't trust anything they say any more.

Hope you continue to improve. Do you get flue shots and pneumonia shots? If not you may want to check into that. With a damaged lung you cant afford to catch a nasty.