View Full Version : Very confused!!

04-02-2009, 07:55 PM
I have been sick for 10 years. I have multiple joint pain, extreme fatigue, severe headaches, pleuritic chest pain, and occasional anemia. My dr thinks I am crazy. I have used NSAIDS and mild exercise with excedrin for headaches. Nothing makes anything better. The pain is worse at night, gradually decreasing during the day, and returning at night again. Symptoms seem to flare for several months, then get better for awhile, only to return. I have gone through periods of weight loss. FANA, ESR, and sed rate were normal two years ago. Any ideas? I don't have the typical facial rash of lupus, but have had a rash on my chest for years that gets worse with sun exposure. Thanks.

04-02-2009, 08:11 PM
Hi there; my symptoms (when they became pronounced) were the same as yours. I have had SLE for at least 10 years now and still do not have a facial rash, but do have all of your other symptoms. Have you ever suggested/requested that your dr. test you for SLE? I also went to several doctors before I was taken seriously and finally found a dr. who would listen to me. Do not give up.......It definitely sounds like you have some sort of connective tissue disorder. Your symptoms are real and you need to find someone to "hear" you!!!!!
Good luck and if you need to talk, "we" are here!!!

04-02-2009, 08:15 PM
Sorry, I forgot to say that my initial symptoms that started approximately 20 years before I was diagnosed with SLE was skin rash all over my body after exposure to the sun. Initially my rash began on my chest, then spread to my arms, legs, torso, etc. It got worse each time I went into the sun and unfortunately I was a "sun bunny"!!...this is typical of SLE...My Rheumatologist told me when I was diagnosed in 1999 that my SLE really began in 1972 when my rash began after exposure to the sun!

04-02-2009, 08:43 PM
Thank you. Very interesting. 10 years ago, after being in the sun, I had a rash that became widespread, like a sunburn, only it wasn't. Also had a fever. It started on torso and spread to entire body. Had alot of aches with it. And when I think back, the joint pains and fatigue started within the same year after that. Thank you. I am seeing my dr tomorrow and asking to be tested for SLE or other connective tissue disorders.

04-03-2009, 03:35 AM
hi sickofbeingsick,

glad you are seeing your dr. today. what type of dr.?

i have had sle for at least 14 years, just got diagnosed 6 months ago. my malar rash did not become a real issue until last year. i would occassionally get the rash, but only when exposed to sun. now, it just appears and it does not matter if exposed to sun.

many of our members notice that our chests will get red when we take a shower. it seems that the warm water will make this appear. have you noticed if yours is worse after a shower?

so glad you are going to dr.....please come back and tell us what you found out.

by the way, welcome to the forum....we are here to help each other and many of us have learned how to deal with the diagnostic frustrations, and how to manage our new lives.

04-03-2009, 03:39 AM
good morning noelg,

thanks for responding so quickly to sickofbeingsick's post. you obviously eased her/his mind, and hopefully sickofbeingsick was able to get some good sleep.

i am glad to see you are here, hope you are feeling ok.

04-03-2009, 05:47 AM
Thanks so much for all of the info. I am so glad that I found this forum. I wrote down a long list of symptoms I have been experiencing for the last ten years to take to my dr today. I am seeing a GP today, and requesting to see a rheumatologist. I have been dismissed as depressed, stressed, a new mom (ten years ago) and a hypochondriac. My daily life is greatly affected by whatever is going on. I live to go to work, struggle through a day, to go home to bed. I can remember exactly when my life changed. I have brief periods where I feel well, only to return to feeling miserable. I can tell when its going to change. I have been in this horrible phase since before Christmas, and I at least feel hopeful now that perhaps I am not crazy, and that there just might be some sort of treatment for me.

God Bless.

04-03-2009, 07:05 AM
good job,

glad you got in touch with us before your dr. appt.

you might want to make a copy of the list (if you have access to a copier) so that you can leave a copy with the dr. hopefully he/she is a person that appreciates educated patients. if not, then it is time to find another.

glad you are going to request an appt with a rheumatologist....this is where you need to be.

good luck, let us know how it goes.

04-03-2009, 07:55 AM
Hi Sick of being sick,

An appropriate username for this place. I'm Rob, and I was diagnosed with Systemic Lupus five years ago. I'm 41 now. If Dr's and specialists dismiss you as a hypochondriac, as if you are "crazy", then I suggest you dismiss them-permanently. If they will not help you with your obviously real symptoms, fire them and find someone who will. It can be difficult to find a decent Dr., and good rheumo's are few and far between, but with a mysterious, and unpredictable disease such as Lupus, it takes a health care provider who cares, listens, and will work with you, not against you.

You could have Lupus, many of your symptoms are very familar to most of us. For me, the sun exposure really rings a familiar bell. I'm fair skinned, and very sensitive to the sun, but I was getting physically ill from very little exposure. And an actual sunburn was like the worst case of the flu that I ever had. I knew something was not right. After a couple of years of telling doctors to go take a flying you know what, I finally found one who would listen to me and help. My diagnosis was difficult because as a guy, I never considered Lupus as a possibility, even though my mother was diagnosed with it in 1990. I knew men could get Lupus, but it just didn't compute at first.

I learned that I had to educate myself, and be my own advocate. Back then, I would have given anything for a place like this, and if I had the support then, that I do now, things would have been alot easier. The important thing is, YOU are here, and you have access to good solid info, and you are taking control of your own healthcare. We have many years of collective experience here, and folks are very understanding here. You need not have Lupus to be a member here either. We have many people like you who are in limbo, looking for answers, as well as family members and others who want to learn more about autoimmune diseases. Please make yourself at home. I hope we can help you find the answers you need. Welcome to our group!


04-03-2009, 09:20 AM
Oh my gosh when you mentioned hypochondriac. It made me think of all the Drs. that said that to me before I was diagnosed with lupus. Of course, I didn't believe it was all in my head because I was actually ill and they were giving me medicine for whatever the illness was.

I also knew that my Dad had lupus and that it has a genetic component to it, and can sometimes run in families. I suspect that my daughter may have lupus, but she has decided not to get tested for it. That is her choice and I abide by that.

Besides if she were to get tested and the results were positive, she could never get private health insurance. The insurance companies put lupus in the same category as they do cancers, I have been told. That means that they are not going to cover it and will call it a preexisting condition.

04-03-2009, 09:34 AM
To clarify my above message, insurance companies cover it if you weren't diagnosed with it and didn't know you had it before you had private insurance. I am not sure what insurance companies do in a group policy, like the ones people are covered under at their work. I am not a licensed insurance agent and I only know what I know through my own experience and through reading literature on lupus.

04-03-2009, 11:00 AM
Thanks so much for all of the posts. It's nice to just feel supported and not alone. My dr told me I am not crazy, that its not in my head. Wow, that's a first! He said inflammatory diseases are not well understood, but a rheumy should help me. I have been prescribed pred., neurontin, amitryptiline while I wait for my appt with rheum. Thanks for being there everyone.