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View Full Version : I'm 25 and have been sick for 29 months



laktjohnson
07-11-2006, 05:10 PM
Hi...I'm new to this board. I've been struggling with symptoms and diseases since I became pregnant in March of 2004. It started with horrible fatique and muscle weakness in the early months. It progressesd to a horrible rash on my scalp and neck, which I had for the entire pregnancy. I developed carpal tunnel syndrome and had to wear braces for my wrists. In my 7th month, I collapsed with pain in my flank. I had protein in my urine and a kidney infection. They suspected stones, but I never passed any. They did a ureter stent procedure, but that put me into pre-term labor. I was on STRICT bedrest, Vicodin, and antibiotics until my 36th week when I was induced. My son came out perfectly fine, thank god! Approximately 6 weeks after giving birth, I became horribly depressed and suicidal. I lost 30lbs. in 3 months. My body just felt wrong. I began to have dizziness, vertigo, and headaches everyday all day. All while trying to care for an infant. As soon as my husband would come home from work, Iwent to bed and didn't get out until morning. Then the insomnia started. I didn't sleep for more than 2 to 3 hours for over 3 months. During this 3 months, I had gained back 50 POUNDS! I was back to my pregnancy weight plus some! The fatigue then and now has been the hardest part. Hypothyroidism runs in my family, so I had an internist and an endocrinologist check my blood. Everyhting came back negative, except the endo. noticed that I had lid lag and expothalamus. She sent me to an opthamologist who sent me for an MRI. He then said that I would be blind within 6 months if I did not have orbital decompression surgery on both eyes for Graves' Disease. I had the surgery, meanwhile no one was treating my thyroid problem. They said that you can have the eye part without having other symptoms of Graves'. But I did! I was incredibly weak and tired during this time. I couldn't carry my son from our house to the car. I would sleep through entire weekends. After the surgery, my headaches went away, but nothing else. I was so depressed from being so sick that I sought a psychiatrist. I was put on Wellbutrin and Prozac. Then on Trazadone to help me sleep at night. I didn't feel suicidal but I was by no means better. My endo thought all of my symptoms were b/c of the depression. By this time, a year had passed. I was back to November 2005. I began having joint pain and stiffness in the mornings. It would take 2 hours usually to feel better. The fatigue was still happening. I decided to go to a rheumatologist. He said I had fibromyalgia and gave me Relafen and Flexeril. Neither helped even a little. He tested for antibodies and they all came back normal. I let a few months pass, I had basically given up. Except I had a new symptom. My legs were terribly swollen and I had burning pain when ever I walked more than a few feet. I was referred to a orthapedist. I had done research when my rheumy refused to listen to my leg symptoms. I suspected compartmental syndrome. The doctor confirmed. I had surgery on both legs in March 2006. When in Physical therapy for said leg surgery, the PT noticed more than typical post-surgery swelling. She suggested lymphedema. I was sent to a lymphedema specialist. It definitely was lymphedema and I have been in compression stockings up to my waist for the last 3 months. I use a compression pump to keep the swelling down even more. I have been seeing the PT 3 times a week for 3 months. With a $20 copay everytime, I'm pretty broke. I found an new endo and a new rheumatologist this spring. The endo says I definitely have Hashimoto's despite what the labwork says. He sent me to the rheumy b/c he suspected something else was going on. She did tests and my sed rate came back high 2X and my ANA was 1:40 which they said was normal. I told her about all of my symptoms up to this point: mouth sores, scaly raised rash on arms and legs, extreme flushing when in the sun, weight loss of 30 lbs. since March, achy joints, and the neverending FATIGUE! I'm supposed to see her again Thurs, but her nurse said I had something that was lupus-like, but I didn't meet all of the criteria for lupus. I'm so confused! Has anyone ever heard of someone having all of these things at the age of 25? I feel like a dying a slow death. I need to know what's going on! Sorry so long!

Kristin

ganesha
07-11-2006, 09:16 PM
Sorry to hear things have been so rough. I was fortunate and got a fairly quick diagnosis, but it does not mean I feel any better. I still feel like crap most of the time and really need to find something that will give me the proper releif. In my opinion even when they put a name on it, they dont have any better idea about what to really do about it. And the paradox of needing to work to pay the increased medical bills I am accrueing, but feeling too crappy to work most of the time is greatly affecting me as well. There is little solace in knowing others understand what you are going through, but it is important. You have been through a lot and having a child must make the situation even scarier, but hang in there. And we are here to listen and offer assistance. Take care and welcome.
Brent

laktjohnson
07-12-2006, 06:50 AM
THank you so much! It does help to know other people are going through similar things.

ButterflyRN
07-12-2006, 08:23 AM
Sorry to hear that you are having a rough time. Try to hang in there! It can be a struggle for most to get diagnosed with lupus. But you're symptoms are pretty typical. Especially with it all happening after your pregnancy....which lupus will typically flare after. And to answer your question it is possible to be 25 and having all these problems. I'm 27 and have lived with it since 11. Trust me, you'll get through this. I know it's hard but try to have patience. And remember we're all here, so feel free to vent your frustrations anytime. :lol: :lol:

laktjohnson
07-19-2006, 03:52 PM
I was finally diagnosed with SLE last week. She put me on Prednisone and Plaquenil and something for the Sjogren's. Anyway, its feels good to know what I have. So now my diagnoses are SLE, fibromyalgia, Hashimoto's Thyroiditis, Graves' Eye Disease, Sjogren's Syndrome, lymphedema, and compartmental syndrome. Does anyone know if all of these things are secondary to the SLE? Has it been SLE the whole time? Also, I was just wondering if there are some other mothers out there with SLE? I was part of a postpartum depression support group after my son was born. I'm looking for that same kind of understanding. I also think a lot about the implications for my son who has had a sick mommy since he was born. Anyone else feel that way?

jelywila
07-22-2006, 12:55 PM
Thank you for sharing your hard story, it sounds so ironically similar, except you have a diagnosis NOW!!!!! Yay!!!

At 24 I had an excrussiatingly hard pregancy that ended up with me hemoraging and delivering 7 weeks early to a 4 lb. 13 oz. healthy baby, who is now a 10 yr old very healthy little girl. I don't feel too guilty about the fact that she has only known the "sick me", but when I am feeling really good, I tend to over compensate and do as much with her as I can. Now kinda understanding Lupus a little bit, I see this sometimes might have set on flares, but I son't regret. I've learned to take each day as it comes and learn to not take things for granted (of course, easier said than done at times :wink: ) I think DD has a better understanding of her mom being human too, that not everything can happen, but what we can do will.

For a long time It was thought that I "might" have MS, since my last GP only saw that my grandmother has MS (she suffered 25 yrs. finally was MRI diagnosed in 1989) and only did a few tests. I recently changed GP's because of very painful swelling in my mouth that was thought of being "poor dental hygene", excruciating migraines and severe fatigue that I cannot just pass off as just stress, anymore. Within my first visit, looking at my chart, and truly taking alllllll my symptoms over the years seriously (I have a notebook from 1997 just of symptoms, exacerbations, which I should start calling flares, etc.), as well as asking about symptoms I never even concidered that have been problems related, he was absolutly shocked that no body even concidered Lupus. He took 3 vials of blood from me right away, had a whole series of MRI's and x-rays done (I have a knee and a muscle around it that's almost decintagrated....last Dr's called it Bricitis, and just stay off my knees!!!) and told me he needs to wait for the blood work, but feels I may have Sjorgen's Syndrom...which explains my very dry eye's, blurred vision at times and some pains that I have at times in the lower back....and will be testing my kidneys too, because of this. He want to look into other possabilities, but told me to forget about MS for now, and maybe look up Lupus & SjS on the computer to get some info and support.

Since this visit and my week of tests (more testing than in the 10 yrs. of "in my head" symptoms), I've been looking into lupus, and I feel so "OH, MY Goodness! That's Me Tooo!" and things that totally make sense, Like how I feel so horrible after a day at the lake in the sun! It's not the heat/or lack of heat....it may be the freeky SUN! Boy don't things feel better when they click, huh? More better than I ever did looking into MS. And especially reading your post, you're not alone, and there is hope :D

Missy
07-23-2006, 10:20 PM
I'm glad to hear that at least you have a diagnosis and a place to put your energies in healing. Many of your diagnoses are typical or "Lupies" , as many diseases are more commonly found in people with Lupus. I had been mistakenly diagnosed with Sjogrens years before SLE, and even now have Sjogrens symtoms that come and go. Many of the diagnosis you have probably have support groups. You will find in Lupus support groups that many people will have multiple diagnoses, so should be able to relate.

FYI - "they" have isolated a gene that makes people more susceptible to SLE, Rheumatoid Arthritis, Type 1 diabetes (juvenile onset), and Graves disease.

Hope your skies look sunnier soon,

Tiffery
07-24-2006, 10:49 PM
Hi, I am 25 and found out from a biopsy from my left cheek that it is lupus, before finding out I had rashes on my face and stomach and arms for a year along with many other things. I have been tying to read up on lupus to get a better understanding of what is comming my way. I read that lupus hits sometimes when you are pregnant, I had my daughter 5 years ago, and since the pregnancy I feel like my health has went down hill. My daughter was born 2 months early weighing 3lbs 12ozs.
The doctors said that I had preclamcia, toxcemia, fatty acute liver of pregnancy, HELP syndrom ( please forgive me on my spelling) as soon as my daughter was born I was felling much better. I really would love to understand more about lupus if anyone would like to talk with me I would love it. One more thing, how can lupus affect the brain? I really need some answers. Thank you

laktjohnson
07-25-2006, 04:59 AM
Wow, sounds like you've been through a lot too. I'm not sure about a lot of the lupus facts b/c I'm still researching myself. But just know that there are other people who can empathize! It really helps me to know that. Sometimes family and friends really can't understand b/c they haven't been through it.

jelywila
07-25-2006, 01:43 PM
Nice to meet you Tiffery and welcom. I'm still just barely learning about Lupus, myself. The best place I've found that I learned alot of iformation from was http://www.lupus.org And of course this place has been invaluable when it comes to first hand info, esp. in the SLE symptoms forum. There's also a forum for just web links too (haven't been there yet though)

And ask, ask, ask :D I've only been here a couple days, and no ones kicked me out yet LOLOLOL

atedj
07-29-2006, 08:41 AM
Hello! I am also 25 and a mother of 2: boy 3 1/2 and girl 2. I wasn't diagnosed with SLE and Sjorgen's until April 2006, so I'm still learning about the disease myself. But let me tell you that I know what it's like to feel like you have the body and energy of someone three times your age! And about being a mother. It's really hard to not feel like a bad mom because you can't do it all. The house is always a mess and the kids aren't always attended to as soon as they should be. But you just learn to do what you can and stop beating yourself up mentally for what you can't. I've learned to just do what HAS to be done: like changing diapers, feeding and clothing the kids, etc. and then trying to get one extra thing done a day: like sweep the kitchen. And I try not to overdo it on the few good days I have because I end up paying for it later. I have also learned to make easier meals (I love my crock pot!). Good luck with everything and don't be afraid to voice your frustrations here, we all understand!

christina
08-01-2006, 03:00 PM
I have not had as many problems as you but I've been diagnosed for two years now and I am now 32. I often feel I'm too young to feel this old. I don't have a lot of advise for but just to let you know you are not alone and I too am going through alot of test to find out why I have so much leg pain I can't hardly work.I also have a daughter (and a step-son part time) and am currently trying to come to grips with not being able to handle everything I used to.Don't be so hard on yourself, it's not your fault.
Good luck to you and your family

mom2two
08-02-2006, 08:22 PM
I know -exactly- how you feel. I have two daughters that are 15 months apart. I started getting sick after the birth of my last child, and that was 6 yrs ago. I was just diagnosed with SLE, Sjrogrens and Fibro 6 months ago. It can be very frustrating. But I was so glad that I finally had an answer to all of the problems that i was having for YEARS! I feel so bad for my husband and children all the time. I really have to get out of feeling that way. Talking to my friends doesn't help to much. I don't expect them to understand. Thats why I am so glad I found this site. By the way, I am 33.
Lots of Hugs, Lea