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MawMaw
05-29-2011, 06:00 AM
Okay, I'm not a complainer. Have had aches & pains most of my life so just always thought that was normal & everyone felt that way. But still no diagnosis so kind of feel like I am in limbo. Should I journal every little thing. Dont want to be paranoid but feel like when I go to rheumy I cant answer his questions because I have always just ignored this stuff, so I cant seem to remember the details. I know everybody is different but could some of you try to describe how "fog" feels or effects you? And I have for awhile now been thinking that I was just being lazy but is that the fatigue? On Thurs. I had worked pretty hard most of the day (and really didnt eat much) & just sudddenly felt like if I didnt sit down I would just collapse. Never happened before. Thanks to everyone for sharing your stories & info

Linda From Australia
05-29-2011, 06:05 AM
Hi Maw Maw, I will spend a bit of time answering your question, but I'm afraid it is going to have to be tomorrow. It is getting late here in Australia and I need to go to bed now. I will tell you though that I know how you feel. When I first went to see my Rheumatologist, he would ask all these questions and I felt so dumb because I would say "I don't really know" The one advantage that I had was that I was already diagnosed with Lupus through blood tests and a skin biopsy. So now when I go I can add more information as I start to understand more and more about Lupus.

Peridot20_Gem
05-29-2011, 07:45 AM
Hello MawMaw,

Welcome to WHL and nice to have you with us.

We all have the symptoms your refering to and it drags you down badly and the reason why you felt like you could have collasped the other day while working is because the aching and pain can get to the extreme, where you have to learn to pace yourself out and on those better days when there's not so much foggyness put more into what your able to do then.

Writing down what's happening to you is great for when you see your Rheumo and fire the questions, As your Rheumo done bloods to see if you have an autoimmune diseases besides Lupus?? but always remember this if you do have any issues connected to Lupus the bloods can fluctuate your blood and give off false readings, so it's a grin and bare case of keep having bloods done till something shows.

It will be nice getting to know you Terri xxx

MawMaw
05-29-2011, 03:54 PM
Thank you, Terri & Linda.
I am new to all this & your info is very helpful.
Laura

Peridot20_Gem
05-29-2011, 04:00 PM
Hello Laura,

Your welcome from us both and Linda will be intouch when she's back on line, she's a lovely person.

It may be new to you but by joining in the threads and commenting you'll learn so much about the Disease and other issues that can come with it and if your ever feeling down just come on and make a new thread and vent as someones always on line to either answer you or help in one way or another.

I'll enjoy getting to know you. xxx

tgal
05-29-2011, 04:24 PM
Hi There! I am going to give you a link to a discussion we had here awhile back. Hope this helps answer your question! Feel free to post in it or come back here for more discussion!!

http://forum.wehavelupus.com/showthread.php?9044-Good-afternoon!&highlight=lead+blanket

kim,l
05-29-2011, 06:05 PM
hi laura welcome whl we all experience similiar symptoms sometimes the pain and fatigue can be so overwhelming and the brain fog i agree with with everyone i find the only way to explain to doctors is to keep journal of how you are feeling and if any one thing makes you worse good luck and wish you well with getting the answers you need and just remember we are here for you when ever you need to talk hugs kim l

tgal
05-29-2011, 07:01 PM
My fog is bad today and I completely forgot to answer the journal part! While trying to get a diagnosis I think it is imperative that a journal is kept. I also had a 1 page essay of sorts that I handed to every doctor that I went to see. It was a brief overview of my life during this illness. Blisters, fatigue, headaches, rashes, whatever. I hand that and a typed out page of every test result that I have had come in "out of range". Don't give that to the nurse, give it to the doctor while he is standing in front of you. They can ignore the file but they will usually read those since you are sitting in front of them,

I also get copies of not only the lab results but the entire chart every doctor has on me and even discs of my MRIs and such. Some of them costs 25 dollars but it is worth it. I have a copy of my file from every doctor and of every test. I have Discs of every MRI and CT Scan I have had. Let me tell you why I do all of this. I went to a Neurologist checking for MS. He was very dismissive and came back in and said "Well all I have is the written report of the latest MRI. I will have to get the films and you will have to come back. I reached into my notebook and handed him the disc he was looking for. He was rather shocked but he left to read them.

You value you as a person. They see you as patients. Write it all down and then summarize a 1 sheet only transcript for them. Make them see you. It will help!

steve.b
05-29-2011, 08:07 PM
hi laura,
i am a strong advocate of the journal. i was doing one before i knew what they were.
my rhuemy said it saved a lot of questions. he understood what i was going through.
he has booked an extended visit for our next meeting, so we can discuss what i gave him last time.

i strongly encourage using a journal.

Glibby
05-30-2011, 02:27 AM
Hi.

All I can say is journal everything as far as aches and pains from here on out. It will help you once you get to the dr.s office...helped me for sure.

Linda From Australia
05-30-2011, 03:23 AM
I can't believe this, I just typed a long post and then something happened ..... my New Apple lap top just ate up my post ... OH the joys of working with an Apple computer!!!! Well I will try and think about what I just write.It may take me some time.

steve.b
05-30-2011, 03:47 AM
Well I will try and think about what I just write.It may take me some time.

time to think............or time to rewrite

sorry linda i coudnt resist.

Linda From Australia
05-30-2011, 04:08 AM
OK, 2nd try. And this time I will copy every couple of sentences. The problem is at the moment I know what to type, type it, but there are random words and letters in my post. I would like to blame my new Apple lap top, but sadly, it is just me .... my mind and fingers are not very coordinated at the moment.

I feel a little cautious about writing a comprehensive journal because I don't want my Rheumatologist to think I am just complaining about the slightest of things. I know that there are many people who see him are a lot worse than me. But then again, My life has changed drastically in less than one year. And I feel that he needs to know what problems I am having.

I have always written a very comprehensive journal for my autistic daughter and demand her health care team to listen to me and take action when things need addressing. I write a summary and discuss what I have written. They appreciate my efficiency and we work together as a team to help her.

However, when it comes to me, I really don't want to bother my medical team. I have no idea why. But thanks to my wonderful new friends at WHL who encouraged me to tell my doctors how bad I was feeling, last time I saw my Rheumatologist, I wrote 3 pages of how life has become difficult. As I read it out, my doctor wrote notes. If he didn't seem to take any notice, I would have written a concise summary, probably only half a page of dot points and given him a copy to read as I read out mine. Thankfully my doctor listens to me.

So I would suggest for you to write a comprehensive journal of all your symptoms and how you are feeling, then write a concise summary, making it very easy to read. Make a copy for your doctor to put into your notes if he doesn't write any notes. As time progresses, you will get to know what things you need to write down, and which things you can leave out. Hopefully you can work out what will work for you very soon.

Peridot20_Gem
05-30-2011, 02:01 PM
I can't believe this, I just typed a long post and then something happened ..... my New Apple lap top just ate up my post ... OH the joys of working with an Apple computer!!!! Well I will try and think about what I just write.It may take me some time.Linda,

You must be a saint because in the past i'd have seen the time it would have seen the wall. lol

tgal
05-30-2011, 03:36 PM
Linda, isn't it funny (sad) what we will do for our family but won't do for ourselves.

Peridot20_Gem
06-01-2011, 01:43 AM
Hello Mawmaw,

How are you feeling in yourself and please keep we updated please.

((Hugs Terri)) xxx

MawMaw
06-01-2011, 05:47 AM
I feel exactly the same about writing down every little thing. So far most of my pain is just kind of annoying. Sometimes bad enough to take meds. So feel silly writing down what seems so minor, but since still looking for diagnosis I think "maybe this is important".

steve.b
06-01-2011, 07:11 AM
i suggest write it down.
list the degree of pain as "annoying" , later it might change to "dull" or "sharp" ,"gut wrenching".

as long as you are somewhat consistant, it will help the doctor, if he reads it.

Peridot20_Gem
06-01-2011, 09:27 AM
If you can write things down all the better if your head allows you, as it's better for when you see consultants.

How you feel about the pain annoying that's just how i feel and i don;t care you can't express it to someone who as'nt got it themselves, as some days it's abit lighter but when it doubles up my god it can be severe.

Do takecare Terri xxx