View Full Version : Just Joined
02-18-2009, 04:16 PM
I just joined this group and am looking for some info...
I have been diagnosed with SLE for about 10 years and recently find that I'm having more cognitive issues. I frequently feel a bit muddled or on edge. I am more and more sensitive to sounds and tactile feelings. I get anxious when things aren't organized or cleaned up. Are others of you in the same boat? I'm worried that recently these feelings are becoming more intense.
02-18-2009, 04:30 PM
Just to say welcome and hello :)
I have got ME not LUpus, but i too have the same. Depression, severe anxiety to the extent that i too get muddled and panic attacks, have foggy days, Insomnia, depression and generally get overwhelmed.Everything seems too much to handle Some days i feel im going crazy and sometimes i have unwanted thoughts and hear voices.This is the most scariest out of all the symptoms.
I can assure you i am not crazy. (She says trying to type in a straight jacket lol).
As uncomfortable or how distressing these overwhelming problems get.....remember you are not alone. Just take a deep breath and know i understand and many more will too.
Have you been to your doctor and told him your feelings? If not you should. I think you will find many people on here have one or many of the above symptoms. I think with any chronic illness you are bound to have extra's added on unfortunately.
Relaxation classes are a good way of learning to cope, CBT is good too. Have a chat with your Doctor, dont keep it bottled up inside get it out in the open. Come on here and tell us, we wont judge, but will try our best to help you cope.
Many more people will post here for you soon, so just hang in there and watch the replies you get. Im sure one of us may make you feel a little better.
Oh i was joking about the straight jacket lol....its a night gown really :)
02-18-2009, 04:57 PM
I am so sorry to hear of your symptoms. You should reort these to your rheumatologist, because these are normal symptoms when in a flare (at least for some of us....lupus is a personal thing). Different members of the forum are on different medications. Your dr. should be able to work with you on this, and rest assured that there are so people on this forum who are incredibly knowledgeable about medications and symptoms.
Welcome to the group...it so changed my approach to my well-being.
02-18-2009, 05:32 PM
Welcome to the board. Sorry I missed this post yesterday. The site has gone through some changes and I'm still getting used to it, as everyone else is too.
I agree with mountaindreamer, I go through those symptoms when I'm flaring. I think it's because I'm having trouble controling my body that I get anxious in general and feel a desire to try and keep things as orderly as possible.
When I'm not feeling well, I get upset and everything seems out of control to me. I'm sure I drive my husband nuts. I become very jumpy and startle easily.
One of my co-workers thinks this is quite funny and goes out of his way to sneak up on me. One of these days POW! right in the kisser.
I've warned him that I might swing before I have time to think...he seems to take this as a challenge instead of a warning. Grrrrrr. Don't get me wrong, he's a very nice young fella. He just doesn't "get it".
You are not alone in this. You should take a moment and write down what sets you off, then take your notes (keep em short and to the point) to your doctor. Depending on the situation, there is help out there and your doctor should be made aware of what you are going through.
Hope you feel better soon.
02-18-2009, 06:41 PM
Just wanted to say Hi and welcome you.....I'm glad you decided to join us.
I've had Lupus for 27 years. Being sensitive to sounds and 'touches' was something I've had since early on in my diagnosis. It was definitely a lot more pronounced and uncomfortable in the beginning for me. I've noticed it has gotten better over time. I've always thought it was just one of the ways Lupus affected my nervous system. I mentioned it to my doctor long ago, and since I wasn't having any other symptoms or had started a new med, he told me to keep an eye on it and if it got more intense, to let him know.
Have you started any new meds, or has anything changed in your treatment lately? As Sits said, it's always good to keep track of these things and bring them up at the next appointment. Are you seeing your doc soon? If the appointment is a ways off, it wouldn't hurt to phone your doctor and let them know what's going on. They may want to see you sooner.
I'm sure others will be along soon to share their experiences. You may find that you're not alone in this at all.
02-19-2009, 10:23 AM
Many of us have had to deal with the feelings of anxiousness, depression, and especially the brain fog. As others have mentioned, these symptoms seem to be heightened when we are in a flare.
I recently went to Washington DC for the inauguration. I guess that the stress of travel threw me into a bit of a flare...I'm not sure. But, I found myself, at one point in DC, sitting on the floor of union station..crying!!! My dear hubby was so perplexed because not 1 hour previously, I was all smiles, laughing and almost deliriously happy. I, to this day, cannot pinpoint why I became so depressed. It just came on me suddenly and lasted for hours and hours. I called my therapist (yes, I keep a therapist just like I keep a rheumatologist and a GP) who explained some things to me, talked to me, and got me back on my feet again.
I say all of that to say that you are not alone. I've decided to treat these feelings and emotional upheavals as a part of my disease and to not go down the road of "There is something wrong with me!"
There is nothing wrong with you, nothing! You have a chronic disease that can affect every single part of your body, including your emotional state and your memory.
We are here to help you through these issues and to make sure that you know that you are not alone!
Peace and Blessings
02-20-2009, 05:23 PM
Thank you all for the warm welcome and feedback. I'm going to take the suggestion to write down the most frustrating symptons and talk to my doctor about them. I don't have an appointment for another three weeks, but if this keeps up I will definately be calling her sooner.
Hangin in there - Kristin
02-23-2009, 08:28 AM
Welcome to the site. I am sorry that you are having this problem and hope that you get over it. My name is Kathy and I have SLE, Lupus and several other auto-immunes. You have gotten some really good advice. I hope that you keep posting.
02-23-2009, 09:33 AM
So sorry to hear your feeling under the weather. I had for some time and my Dr. put me on zoloft and it had has helped me tremendously. I've started taking Lyrica as well for my symptoms and it helps to. I'm actually sleeping through the night. I feel so relaxed when I get up in the mornings and have energy to. Which is something I have not had in a long time. You definitely need to talk with you Dr. I'm sure they will take good care of you. Again we welcome you to our family here with open arms and lots of hugs:)
Take care Kristin, and God Bless