[JustJess]

Hi - My name is Jess and I am really glad I found this site.

I have had symptoms of Lupus or some other autoimmune condition for a few months and I feel like my life has been completely turned upside-down.

I have no energy, something new hurts every day, and I feel like my brain doesn't work anymore. I had a rash last month that has faded now (on my arms and a little on my face) as well as a low-grade fever.

After four different doctors (who gave me four different answers...Uh, I got the feeling they thought I was exaggerating my symptoms...AHH!), I have finally gotten referred to a Rheumatologist. I go a week from tomorrow and I am nervous. But more than being nervous, I want answers.

I want to know I'm not going crazy - that something is wrong to make me THIS tired - that there is a reason my joints hurt....

I want to feel better. I want to clean my house and laugh with my family again. I want to go to work and not drag through my day.

Anyway.

I'm grateful to read the stories and advice here. I don't feel as alone as I did.


Thanks-

Jess

 

[KarolH]

Hi Jess and welcome to the forum.

I am glad you found this site and you will find a lot of very supportive people here that are willing to listen, offer advice and have unbelievable knowledge too.

I have learned more here then from my own doctor. I am sorry your feeling so badly right now but I am happy that you have a appointment with a Rheumatologist. You are headed in the right direction.

Have you had any blood work done yet? What has your primary care doctor said to you about all of this? I hope he is supportive and understanding and not thinking this is all in your head.

Are you in the USA or the UK? Anyhoo, I hope to get to know you better and good luck with your appointment. Let us know how you make out and join us in the chat room sometime. We tend to have fun in there and also you can get answers to any questions you may have right away. Gotta love live chat!!!:wink2::wink2::wink2:

 

[lazylegs]

Welcome to the site Jess. Please feel free to ask any questions you might have. There is almost always someone able to answer your query.

It does sound like your symptoms need further looking into. I suggest you go armed with a list of your symptoms when you see the rheumatologist. Don't count out any symptom as inconsequential. If by some chance the rash returns try to get a photo of it. It is difficult to tell from a photo but it would give the doctor a general idea.

Good luck with your appointment.

Take care,
Lazylegs

 

[Pink Pearl]

Hi Jess,
No, you are not imaging all the symptoms that are going on. The suggestion that you keep a journal/symptom log for the next month will be a very good one. Record your temps, take pics of rashes, and if you are having pain problems, rate it from 1 to 10.

This is my own opinion, not reflecting on anyone else; if the rheumatologist (rheumy) won't go thru your data with you, then leave and find a different doctor. IMHO, if the doctor is not concerned with your concerns.....a BAD doctor mix. Not every rheumy is empathetic to lupus patients. Just cuz a doctor studies rheumatologic conditions, does not make him an expert on all diseases/conditions.

In the meantime, take care of yourself and give yourself permission to take breaks, naps, rest as you need. Eat healthy foods and if you have been prescribed medications, take them as needed.

This group has among the largest spectrum of lupus experience you will find anywhere. The moderators have a large wealth of knowledge.

Stay well,
Sally

 

[Kyphi]

Hi Jess, Im new to all this too. I just wanted to say that this site has been my anchor. No matter what you will always find a kind listening ear here. Its been helping me no end - especially when I felt that everything else is caving in or no one understands. Im in a similar situation to you at the moment, I find it helps just knowing your not alone with this and the fantastic advice you get here keeps you sane. So keep visiting, keep your chin up and be kind to yourself.
Kay x

 

[onetay]

Hi Jess,
Welcome to the site, and I am glad to hear that the posts here are helping people see they are not alone and that there are thousands of us out here. I know that you are saying as I felt I was the only one in the world with lupus until here. I have learned so much by posting and replying, and of course chatting with people here.

I hope that you are doing well and feeling well.