Diagnosis!!! They'll Probably Find It on My Autopsy!!!! - Lupus Message Board

KimInVa · 05-04-2001, 02:43 PM

I just found this board today and I hope that someone may help. I'm in the middle of a new "flare up" and as usual my doctor wants to give me a prescription for anti-depressants. This flare up was a little different as this one was accompanied with a horrible rash on my legs. (Just returned from vacation) For 5 years now I have had severe joint pain and swelling, migraines, ulcers usually in the nose, fatigue, dry eyes requiring artifical tears, infected hair follicles and those other "strange" symtoms. My problem: My blood work is usually normal other than a high C-reactive protein. Did any of you have problems with your doctor trying to keep treating you for depression? I'm somewhere between wanting to cry my head off today and take that anti-depressant box and stuff it up my doctor's nose. He thinks it's early stage Lupus but can't diagnose it due to the blood work. So again we treat the symptoms with no diagnosis. I just want to scream at him "I'M NOT DEPRESSED" but then he'll say I'm psycho which I feel today. I'm sorry to vent but quite honestly I'm beginning to wonder if I am going nuts. Any advice would be so appreciated.

KimInVa · 05-04-2001, 09:09 PM

Hi Again. Sorry the above post sounds so scatterbrained. I had just got back from the doctor and needless to say was a bit frustrated. It's been a long week and I'm afraid my first post was more of a vent than I had intended it to be.

Irish · 05-04-2001, 09:12 PM

I'd put on a happy face and not take the anti-depressants! Before I was finally diagnosed with Lupus I had wild symptoms, also. My family doctor said my sleeplessness was caused from the stress of my job. I would walk the floor all night, take a shower, dress and go to work. I tried sleeping pills but they did absolutely nothing for me. I had aches and pains everywhere. The family doctor said it was from walking too much. (Now they tell me to walk for my health.) I went to my family doctor so often that I'm sure he wanted to lock the door when he saw me come into the office. I finally told him that I knew SOMETHING was terribly wrong with me and I wanted to go to a specialist.

He sent me to one in Memphis, but he scared me to death. The Voice of Doom type with a solemn face and sad eyes. He took all kinds of tests and after the second visit to him, I told my family doctor to find another one for me. I had to wait four months to get in to see him, but it was worth it. He is excellent and he will actually listen to me and not laugh at my questions.

I told him from the very beginning that I hated taking medicine and wanted to take as little as possible. He started me on Prednisone, but I only took it a little while because of the danger of it. With his help, I slowly went off it.

I cannot stand for my friends to look at me with pity because I have Lupus, so I have told very few of them. I am so fatigued some days that I can barely drag myself, but I just smile and keep on going. I believe I will live longer if I stay active. Don't give up and don't complain to your friends all the time. They will not include you in their plans if you do.

Good luck...and you are not crazy. Don't take the anti-depressents.

KimInVa · 05-04-2001, 09:28 PM

Hi Irish. Thanks so much for your reply. I have to admit that today has been such a bad day for me. I make a wild post without even as much as a decent hello. It's been such a long process for me. I started with symptoms about 4-5 years ago. Just started out as painful hands and joints. First diagnosed with carpal tunnel in both wrists. As the years have gone by the symptoms have worsened and the flare ups more intense and last longer. When these new things show up such as the rash, they scare me to death. What started out as extreme fatigue and painful joints has now progressed to that plus extremely painful knees and ankles, sensitivity to light (dry spots in the eyes and now apparently this rash) The rash is not what I describe as a rash, just horrid red spots all over my legs. I've had a miscarriage in my 5th month of pregnancy. The ulcers and/or blisters in my nose, fevers and the flu like symptoms. My family doctor always makes the comments or tries to push the anti-depressants. Today, his comment was sometimes we attribute the least little thing to the condition when it's not always connected. I'm 34 years old and so tired of the doctor seeming to be so non-chalant about this. He did finally refer me to a rheumatologist who feels that it "may" be early stages lupus or rheu. arth.. I started Plaquinil 5 months ago and it had helped but this was my first flare up in that time period and it did no good in helping the flare up. The dr. today didn't feel the rash was related to the meds but was "something new". I guess that's the worst part, the drs. saying "yes, you're having a flare up, we just don't know what of."

I practically read the whole board last night trying to learn as much as possible and I was so stunned to read the posts and how similar my symptoms are to some. I feel much better tonight as I've had time to just "chill". I just sometimes feel I could deal with this better if I knew WHAT I was dealing with. Does that make sense?

I'm sorry this post is so long but I felt I owed more of an explanation since my initial rant. lol. Again thanks for your reply. I needed to hear that.

Irish · 05-05-2001, 12:12 PM

Kim:

Glad you are feeling better today. I have never had the rash across my nose and under my eyes like a lot of people. I did have a terrible rash on my legs, just below the knees. I would scratch them until they bled. I finally went to the doctor and he wrote a prescription, but I went to Wal-Mart and compared the prescription to their store brand of a cream that was similar...and lots cheaper. It is called Equate Hydrocortisone 1% Cream and it really did a good job easing the burning sensation. Since then I have made sure that I use body lotion or cream every time I get out of the shower.

I also have the dry eyes and mouth. I have to sip on water a lot and have difficulty singing in church. My mouth gets so dry I squeak. Also, be on the lookout for something called Bells Palsy. I woke up one morning and could open only one eye. The other side of my face had no feeling. I had to eat on one side and seemed to drool. It scared me to death. I called the optometrist first because I had two black spots floating in my eye. He examined me and said the spots were called "floaters" and he wanted me to go to my family doctor immediately. I went that day and he took one look at me and said it was Bells Palsy and it would fade away. He called an eye specialist in another town and got me in immediately. They gave me some lubricating cream to put in the eye and told me to come back in 3 days. To make a long story into a short one, I did get over it...all except the 2 floating black spots in my right eye, but I am thankful that it wasn't a stroke. I don't want to scare you, but find a very good family doctor and an excellent rheumatologist because you are going to have a long relationship with them.

Try the hydrocortisone cream. I think it will help...and keep on smiling because not many people will sympathize with you. They have problems of their own!