My name is Danielle and I am new here. I have had a rollercoaster ride since April of this year, trying to figure out ?what?s wrong? with me. I spent two weeks in bed, thinking I was coming down with some kind of bug? but it passed. I was tired but decided I had to get out of the house. I went to the mall and when I went to fill out a fan card, I could not write my name, without great concentration. It looked like chicken scratch. My balance was off, and I had a hard time walking. When I found somewhere to sit (my 4 year old was with me) I watched him play in the play structure and had crazy pain shoot from the top of my head, down my back, and through my legs. My right lower back and butt went numb. I was really shaky but opted to drive home before things got worse. The next day was my birthday. The day after that, I went to the doctor. He took some blood work, told me to drink a lot of water, and rest.
A few days later, I was dragging to get my son to school, and I could no longer lift my right leg. I would concentrate so hard and could not lift it off the floor. My left leg I could, it was scary and frustrating. So I called the doctor, he told me he thought I had lupus because my blood showed some inflammation levels. He prescribed me a 5 day course of prednisone and while it did give me some more energy, it made me very irritable, and I had a TON more pain (maybe from being more active?). I still have a tendency to lean to my right when I walk. My 8 year old son is bipolar and it is so hard to not have energy, to have anxiety, and be hurting, and trying to understand things from his perspective sometimes.
I also finished my bachelor?s degree in April. I intended to either go to work or go on for my Master?s. Well, honestly I can barely finish a sentence. Sometimes writing is better but verbally I stutter, and lose my words too easily, it is embarrassing and frustrating. I avoided seeing any friends up until the beginning of August and it was still awkward.
I have been to the rheumatologist a few times now, he sent me to the neurologist. My lupus panel showed that I have antibodies for Sjogren?s and for Antiphopholipid syndrome. They?ve also concluded I have arthritis, which we will be discussion on Thursday as well. I failed the initial neurological tests, which concerns her- The rheumatologist thinks that the blood clots have caused me to have something similar to mini-strokes. I?m on aspirin now, every day, and take xanax at night so I can sleep better. I?ve had a brain MRI (without contrast) that came back ?normal?, I had a full back MRI done and I go on Thursday for the results and to maybe have a lumbar puncture.
I literally have no energy. I can maybe sweep my dining room, then lay down because my back and arms hurt. If I push myself more, I get a fever, and exhaustion. There is no ?try harder? for me, I just crash out. The doctor is scared to treat anything until he has rules out any brain problems.
I also have weird purple rashes under my skin, occasionally I get hives that go away as quickly as they appear, I bruise easily, I get crazy bad head pains and sometimes headaches. My body aches. If I wear tennis shoes, my feet swell, if I wear sandals, the feet hurt. Sometimes jeans bruise my legs.
I mean 6 months ago, I woke up at 5 to shower, do my hair and make-up, then get my kids up, take them to school, and always found things to keep me busy, I baby sat, I helped in my son?s class, and I was working on my degree. Today I can?t drive more then 10 minutes without pain, can?t walk around the block, and can barely stand long enough to do a sink of dishes. I?m terrified, I have no clue what to do with my life. I am contemplating asking about disability because with my diminished mental capacity I cannot do what I went to school for. My kids look to me to do things and I have to disappoint them so often. I try to do what I can but sometimes I help my 8 year old do his homework in my bed, because I can?t sit up anymore.
I hear a lot of people who are able to function more and I just don?t understand. I?m so hungry for information, for SOMEONE to understand. My mom is convinced that it is something else- and when I saw a friend I hadn?t seen in a few years, he thought I?d been in an accident, because I was limping. It?s hard to explain to people, no I have an autoimmune disorder- well two actually? How do you explain to people? How do you cope? I get so bored and cabin fever but get scared to go out often, because I have collapsed and ?lost control? a few times. The rheumatologist is concerned I?ll have an ?episode? while I?m driving, so am I.
Anyway, that?s my story? I?m 4 months in and just trying to make the most of every day. I?m listening more and talking less. I?m pacing myself, prioritizing, and learning to ask for help.
I just hope I can find someone here who can understand because sometimes my world feels like a lonely place.
Hello Danielle,
First of all, allow me to Welcome you to Sjogren's World! ;)
We're glad you found us. There are many caring and understanding folks here who care, and loads of information I hope you find helpful.
You certainly have been on a rollercoaster ride. By the way, congratulations on that bachelor's degree!
It can be difficult to discern exactly what is causing some of these issues you're seeing. It sounds as if you have doctors who are looking at the whole picture, so that's good.
I understand how hard it is to be an energetic, productive person and almost overnight become someone with pain, weakness and aches.
I can tell you that there seems to be more research being done to show that Lupus and Sjogren's may be very similar, and some treatments are similar, too. We say around here that these autoimmune things like to travel in packs, so it's not unusual for us to have a bit of this and that together.
I hope you can get more answers with your appointment on Thursday. Please let us know the outcome.
I can also tell you people here care and we "get it." ;) Explaining this to others can be a challenge, and we all know how it can seem lonely when we feel we are the only ones with all this "stuff." There are many more of us that can relate to all you're feeling.
Please keep posting, and know that you are not alone! ;) Come here anytime with any questions or concerns, or just to vent. We'll be here for you.
Take care,
Melinda
Danielle,
I wish I could give you a real hug! Hopefully your doctor can find a treatment plan that will help you to function better. Stress is often a factor in AI disease, and you have certainly had a lot of stress with parenting, working, and getting your degree!
Four months of feeling rotten is awful, but it doesn't have to be permanent. Get the rest you need for now as you sort this out, and plan on feeling better shortly. Please keep us posted. You are not alone in this.
Cheryl
Welcome to the Forum Danielle28.
You may want to check out "Spoon Theory" to understand the ups and downs in your life.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
Your bruising concerns me. Please talk to your Dr about it.
You can have a long full life with some AI diseases. I first was hit with Fibromyalgia in 1983 it went into remission about 10 years later and I was able to work for about another 10 years before other AI diseases decided to join the party.
I use supplements to manage my symptoms as you can see from my signature. What ever you choose to do be sure to research for interactions, counter indications, and side effects.
Hi Danielle :)
Welcome to Sjogren's world. That's tough being hit twice in such a short time and definitely not easy with a kid! You will definitely find understanding and support at this site.
Sjogren's is an amazingly diverse disease which hits some people a lot harder than others but there are treatments for the symptoms and things can improve. Everything seems to take a long time though.
I hope you find the site useful.
Take care - Scottie :)
OMG, Danielle, I know you're in a bad way. I wish I could be there to cry with you and give you a hug and let you know that you're not alone. Don't be terrified --- one of my favorite quotes is from Ayn Rand's book Atlas Shrugged: "If you don't know, the thing to do is not to get scared, but to learn." And here you are on the Sjogren's World Forum! What better place to learn!
This website has been a true godsend for me. Any time I get anxious or overwhelmed or have a question (or even feel good for a change!) I can come here and share and learn. This is a very friendly group, and I'm proud to say that there is no question too basic or too weird. I've never been made to feel brainless by my friends here in the forum, and that means an awful lot to me.
A feature that I love is the search box on the top right. I've plugged in the names of medicines, symptoms, vitamins, etc. and gotten just the informatoin I was looking for right here from my trusted friends. Of course if the info I'm looking for isn't on the forum already, I'll just start a new thread.
One thing you didn't mention is whether the rheumy has placed you on any medication. Plaquenil has been a miracle drug for me.
Keep us informed as to your progress. And know we love you!
Hi Danielle,
Welcome to Sjogren's World, this is a great website.
I am so sorry to hear about all thats happened to you. You are not alone! You have lots of company here. I've been on a rollercoaster for 24 yrs. I've had ups & downs most of my life.
As I get older, its mostly downs.Good Luck with docs apps. Everyones posts are so good and
very true. take care & keep us posted
Love & Hugs to you,
Duffy (thats my dogs name)
Thanks so much for the warm welcome! It?s so hard sometimes to have the limitations, which leads me to get depressed, which makes me more tired? and I try really hard not to complain because my husband does so much and I don?t want to burden him more. So thank you, everyone, for listening! I am not on medication, just on the aspirin so I don?t have a major stroke or other blood clot issue. I am on xanax because my anxiety level is insane. My heart just randomly starts beating really hard and that concerned the Rheumatologist a lot. He is hesitant to give me anything for pain or really anything because he is concerned about the neurological involvement. I?m still learning all the terminology for things and trying to educate myself as much as I can. When he told me about Sjogrens I?d never heard of it. He said ?In a lot of people it just goes away?? and when I came home to research it, I found information that did not agree with that. I don?t really have problems with my eyes, though when I was a baby I had surgery to have my tear ducts open- sometimes they get dry but nothing really bad- and sometimes they randomly start watering. I do have sun sensitivity- My temperature bounces up and down. Normally now it?s about 99.2, though if I push it I either drop to like 98.0 or up to 101. It?s like a yo-yo but it doesn?t feel like a fever (like getting the chills) I feel like I?m on fire. I do get irritation in the back of my throat- I think that gland between my jaw and ear- it gets like gritty- and sometimes makes me cough, sometimes it just hurts and I find usually I get an anxiety attack when it starts to hurt.
I?m concerned a little my rheumatologist is not very familiar with Sjogren?s but I hope I?m wrong. He is a very compassionate and kind man. I do hate that I have to wait 2 months between appointments. My student loans are coming due and it just adds to the stress. I try to think of things I could do but I really don?t know. I?m going to start volunteering an hour or so in my sons? classes each week. I think that will help with avoiding depression. If I go on Monday and Friday, I have the weekend to rest and be refreshed. Otherwise the only time I leave the house is to take them to and from school, and my husband goes grocery shopping with me every other weekend.
I?m looking forward to getting to know everyone. I live hundreds of miles away from most of my family. I do have my dad living with us, he was homeless and his emotional state is a little unstable. I?ve been trying hard to help him, have him in counseling, etc. but some days it is just more frustration. I fortunately have one friend here, our kids go to the same school, are in the same grade, and our oldest are in the same class. I am grateful for her- though I think she doesn?t believe I?m sick- she is always saying ?Oh I feel that way all the time?. There?s tired, there?s exhaustion, and then there?s fatigue I guess? I just tell myself if people haven?t experienced it they just can?t understand. SOOO GLAD I found a group of people who can understand!
You poor ole cookie. I'm so sorry this is happening to you. April seems to be a popular month for Lupus-like things. Be sure to stay out of the sunshine, in case that makes things worse (clothes, hats, glasses, sunscreen, gloves). The lumbar puncture seems like a good idea. Rheumys often defer to neurologists, so it's good to get them to weigh in quickly. LP may point them in an MS direction which has meds that are quite effective at slowing down the progression. In any case, the rheumy will probably put you on something like plaquenil (others are methotrexate, cellcept, more...) The sooner you get treatment the better, especially if MS is involved. And when you feel like it, maybe let your friends know what's going on <3
Danielle, I like to tell people that the difference between being tired and having clinical fatigue is like the difference between having a blue day and having clinical depression. Joe posted the link to Spoon Theory -- perhaps reading that will help your friend understand how you feel!
Danielle,
Welcome!
Have you had your thyroid checked? Low tempuratures & racing heart could be symptoms that your thyroid is off.
Good luck & hope to hear more from you!
Carie
Yeah my thyroid was normal. That was one of the first things that my PCP checked... :-[
Hi Danielle - welcome to the forum and a great bunch of members. ;D
You certainly have your plate full between your family, having your Dad living with you, your health, etc.
You will hear a lot of stories here from members whose doctors think Sjogren's is JUST dry eyes and dry mouth. No big deal. Ha! Obviously, these doctors haven't walked in our shoes - because Sjogren's is a lot more than just that!! Some of our members do just have dry eyes and dry mouth - others have more involvement - it's just so individual.
I hope you find this site helpful to you on your Sjogren's journey. There is a wealth of information on our links page you might find helpful.
If I could ask a favor of you - when you post, could you break up your paragraphs please as one long block of type is really hard on our eyes. Plus, it's hard to concentrate on where we are in the paragraph when we're reading when it's all run together. Thanks. ;)
Again, welcome.
Bucky
I will work on the paragraphs. For some reason when I copy and paste from word it all runs together like that. It also does funny things with quotations. I will start using the box in post reply and just type in there, instead of copying and pasting. :)
It's not a big deal, Danielle. It seems that copying/pasting does that with the question marks. If you hit reply and post in the box it won't do that. It may limit your space, but if you need more room, just hit reply and keep going! ;)
Some of us have problems reading a lot written closely together; the eye issues, you know? So, we want to "see" what you're saying, but if you spread it out a bit, it will help to read it a little better. That way more people can respond! ;)
About your last post, I know the feeling of isolation somewhat. After I needed to stop working, and after I finally felt like doing Something, the question is: what now? Volunteering at the school sounds like a good option. Getting into anything you're interested in and getting out with people and the world a little will help those feelings of being stuck at home. And, you have new friends here, so that's a plus!
Have a good day. and keep on posting, ok? :)
I really enjoy gardening and since sometimes I get a bump of energy at about 9 pm (after it's cool and quiet), I go out and water. I live in the city so I have a small garden but it still helps me feel like I'm accomplishing something. However, some days it's really hard to do that.
I'm in hopes that the teachers will understand that I will do my best- I might have to just sit and staple things together, or little tasks. I figure I'll tell them an hour first and see how I do. I need them to understand that I might have to leave, if I start getting weak, my temperature rises, or I get vertigo or a headache. It is a lot to try to make someone understand. However, I think they're so in need of help right now that they will appreciate it regardless.
I think it will help me to feel involved and they'll enjoy seeing me out of the house too. I love my kids so much and sometimes I feel the worst about what my being sick has done to them.
I have that little spurt of energy late in the evening, too. I've watered my plants outside at dark many times this summer. ;) And sure, it's an accomplishment!
I think the teachers at your child's school will be very glad that you want to help out in any way you can. You're right about getting out and getting involved. We have other people here with young children and they also worry about how their illness affects their kids. Just remember you are still a good parent; you just may have to adapt a bit with things you do, but your children will remember the time spent and love given to them, not the fact that you were ill.
Take care, dear. ;)
Danielle,
Welcome! I have found this site very useful. It sounds like you are in good hands and your doctors are exploring all possibilities.
The lumbar puncture and Brain/Spinal MRI's are to check for MS and the other tests are to check for other AI diseases like SJS, Lupus, RA, etc.
I was diagnosed with MS in 1996 and just recently with SJS and other nonspecific autoimmune activity. Many of the symptoms overlap, so it is important to get a thorough work up. I have been on Beta Seron injections for the MS since 1998 to slow the progression. I have just started Plaquenil for the SJS/lupus like diagnosis.
Good luck,
Buddybelle