New to site
My name is Tanya, I am 23 years old and just found this site today. I was part of other forums before which I never really got much replies from so I am hoping this one will be different. This post is going to be long...I'm sorry about that.
I have not been "officiallly" diagnosed yet, but I have been feeling sick pretty much the majority of my life and now in my 20's is where things are starting to show up and give answers as to why. The biggest thing that finally got the ball rolling faster into figuring out what was wrong with me, was back in 2008 when I woke up one morning and couldn't and had a finger on my right hand stuck down completely, and I could not lift or pry it back up, plus it was pretty painful and weird walking around with one finger stuck down. So I saw my family doctor, he referred me to a surgeon and they put me under and released my finger. Diagnosed it as trigger finger and that I would be fine after that. Well it kept happening, more of my finger start staying locked down, it was like my hands would swell so badly during the night that by morning I was so swollen and stiff nothing could move. So my doctor referred me to the same surgeon again, and I was ready to be put under once again but this time they were going to preform the release on all my fingers(but one at a time, so in total 10 surgeries). Before that happened I started getting upset and figured something else MUST be causing this, I didn't want to just keep having surgeries because I'd end up losing my job for all the time I'd have to take off to recover, plus therapy to use my hands again.
So I went back to my family doctor and I asked to have my blood taken to see what they would find, and a week later I got a call saying I needed to come in to see him, and it turns out I tested positive some unusual antibodies (ana, rf, and another one I forget the name of, and he referred me to my first rheumatologist immediately.
The same process all over again, more blood tests, a complete physical examination. He found swelling in every single joint in my body (I'm not exaggerating), from my jaw down to my toes. The worst of it being in my hands, wrists, hips, ankles and toes.
His guesses were SLE Lupus, Rheumatoid Arthritis, and Syjogrens. He started me on Plaquenil (he said it was the safest one to use) and I continued to see him every month for routine blood tests. Well...The Plaquenil side affects ended up being too much for me, I couldn't eat at all on that drug and ended up dropping below 90lbs (I'm 5'3, so I'm a small person, but I was starving, I just couldn't eat, even the sight of food made me vomit).
He ended up moving his practice 2 hours away so I could no longer see him and we didn't make much progress, things had only just started. So I went back to my family doctor to be referred to another specialist (I waited in line for 7 months), and during the waiting period he told me to stop taking the plaquenil because I was becoming way too skinny. So the whole 7 months I was on NOTHING, and it was HORRIBLE.
During that time my body had started giving me way more issues at a faster rate, chronic fatigue, excrutiating pain in my hips, so bad there were days I could not even walk (had both my hip joints injected with cortisone), and even when I could walk, every step was agony. I felt sick every day, never even close to 100%. Sore, tired, depressed, look fat in places from swelling, bruises all over me with no idea how I got them, always running a bit of a fever (I have not been 98.6 in over a year), burning red rash on my face and other random rashes coming and going all over my body, decreased ability to grip with my hands, I drop things all the time now, my hands will just all of the sudden lock up. In august of 09 I had a problem with my heart and was hospitalized during the night, had an echocardiogram done and they found a little bit of fluid and swelling around my heart area, which they say is why I have chest pain, the list goes on and on...
I am now seeing another Rheumatologist, just started seeing him, he examined me and my old blood tests and he think I have either RA or Lupus. He started me on Prednisone, I take a 5mg pill once every day and I have noticed a tiny improvement with the pain and the fatigue, but in general I still feel sick daily. He told me its too dangerous for me to be on no kind of treatment at all because of the disease possibily spreading to my organs if it is indeed lupus, which I think he is leaning more towards than RA because of my childhood health history and the antibodies in the blood tests. There's all these limitations and its just UGH, it drives me nuts! Please its incredibly scarey, I feel VERY alone, I have no one besides my best friend and my therapist, and both of them are healthy people. It's like I've never even had the chance to be normal.
I'm sure I have forgotten a lot of things I wanted to say but I think this is long enough for now..Since this is only the introduction section.
I will honestly say I am VERY depressed, about all this, I feel devastated, I feel betrayed, because NO ONE ELSE, in my family has any of these complications or issues, they are all healthy people, its JUST me. I cannot even remember the last time I didn't feel sick.
I am in therapy weekly for recovering from 18+ years of narcassistic abuse from both my parents, my ex leaving me after 5 years together, and now this is being thrown into the bin. I'm trying to move on with my life and be happier but it sure is hard...
please pardon some of my bad english...
hi hunniebun, i'm new to the site to and lupus can't be found in my family as well. i don't know a whole lot about this thing but i don't like it a bit sick of the battle after battle in a war i can't win. well hope you stay on ttyl.
The Following User Says Thank You to robert For This Useful Post:
welcome to our family. I am so glad that you found this forum, you will find so many knowledgeable and caring members here, and i hope you will stick around and let us give you gentle group hugs.
when i was first diagnosed, i too was extremely scared. My son found this site for me, and i will tell you that i feel like membership here has been more helpful to me than all of the specialists that i have seen along the way.
it sounds like you are getting good medical attention, and thank goodness for that. But, even with good drs., this is still a very frightening disease. We all know the reality of lupus, and we are justified in our fear of it. So, allow yourself to be afraid. Anytime that something scares you, please come here and ask for help. We are always here to listen to each other vent, to offer medical advice, or to provide support.
I guess one of the main things that i have learned from the forum, is how to live with lupus. All of our lives have had to change, our bodies and health are now a priority, and we have learned what we can do to avoid or lessen the flares. There are some very good threads that you can find in Lauri's lounge about how we have adjusted our daily lives in order to continue our lives.
It sounds like you have been under a tremendous amount of stress lately. You have had to overcome so many obstacles, and now you have this diagnosis staring you in the face. I am glad that you are seeing a counselor, they can really help us keep our faith in ourselves.
The issue with family and friends understanding the magnitude of this disease is something that everyone of us face all of the time. There is a wonderful story called "the spoon theory". I think it is listed in the sticky's under lauri's lounge ( i will try to find it and bring it back up). It is a true and precise story about living with a chronic disease....i had my kids and family to read it, in an effort to help them understand what my life is now like. I have lost special friends because they just did not understand what happened to the over-active, hard-working lady that i was. I had to change, and if they could not understand, then they had to go.....very sad.
I will close now...i have rambled on for too long.....again, welcome.
share a smile today
The Following User Says Thank You to mountaindreamer For This Useful Post:
this is the website for the spoon theory....i promise it is worth printing and saving.
share a smile today
The Following User Says Thank You to mountaindreamer For This Useful Post:
Welcome to WHL. Phyllis did a great job of telling you about our "online family". Please don't feel that you are alone in this. Come back to chat with us anytime that you feel the need. We all need to vent sometimes, and everyone here knows what it is like.
I recognize many of your symptoms. My stiffening happens in my knees instead of my fingers. I spend time every morning stretching my knee so that I can get out of bed.
I wish you luck with your new rheumy. Keep trying until you find the right combination of meds to make you feel better.
Many of us have had to adjust our lives, but believe me, life is still good. Keep working at it, and you'll be fine.
The Following User Says Thank You to magistramarla For This Useful Post:
Welcome to WHL, Tanya.
Wow! It sounds like you've been through the wringer in trying to obtain a diagnosis and appropriate treatment.
I agree wholeheartedly with Phyllis about printing out The Spoon Theory. It helps keep things in perspective.
I understand your feeling so alone. People who do not have a chronic medical condition can't truly appreciate how just getting out of bed some days is difficult. It's not that they don't love us, but they just don't "get it". That's why WHL has been a saving grace for so many of us.
Please keep posting and asking questions because we do "get it".
Welcome to our WHL family, the others have already started you in the right direction. I just wanted to add my cyber hugs for you. We all felt all alone in the beginning; but this site that helped many of us to adjust, accept and move on. I know how hard it is to feel sick all your life and not know why. But you have an answer now; you will be able to start over.
Just remember you are not alone you now have all of us here are WHL to talk to. Please continue to post. we will answer.
I'd like to thank everybody for their replies, it makes me feel better knowing there are other people out there I can relate to and talk to about this.
The Spoon Theory was amazing, I have already showed it to my best friend and I will be printing it out to keep a copy for myself, as well as giving it to other people who know me so maybe it can help them understand me better because right now, they barely do, or don't even want to try.
Getting out of bed is difficult for sure...My knees swell as well, they've been swelling for the past few days none stop, in fact everything swells ha, and the fatigue...my gosh, I can sleep 10+ hours, wake up, and feel like I could sleep again! Argh.
I'm doing my best to continue with my life, this is all just very new and at the same time its not because I've always been sick, I've nearly lost all my white blood cells, had seizures, heart problems, and now I at least have a diagnosis and reasons as to why these things happened but it still doesn't bring any relief, just more despair.
I'll definitely be posting, I'm very happy I found this place. Thank you
I'm a little late to the conversation, but I wanted to say hello, and welcome. I'm Rob, and I was diagnosed with SLE in 2004. Sorry to hear that you are in diagnostic limbo. There are quite a few people here who are also still seeking a diagnosis, so you are definitely not alone. I too had a relationship end. My girlfriend/fiancee of 6 years left me not long after my diagnosis. Like you, I also had alot of issues to work through with a therapist, and there were many years of depression to deal with. And, like you I have been trying to move on with my life and become happier, and slowly, I have. I know you are in a dark place right now, but things will get better. Just hang in there.