Newly diagnosed

[sleepy-head]

Hi all. Just after the birth of my fourth child, I developed a slight raised rash on the side of my nose. At the time the doctor said it was probably hormone imbalance which I could quite understand at that time. About four months later, I noticed a rash appearing on the side of my face, which then began to spread and appear on other parts of my face. As the rash was being investigated, it took probably about four months to be diagnosed with Discoid Lupus and then later blood tests came back that it was "possible" SLE. During this period I was extremely tired and I seem to suffer one thing after another with joint pains, cramps in my back at night time, freezing hands. The rash really took its toll on me as it was so noticeable and I became very depressed, and I put the other symptons of the joint pain, tiredness as part of my depression. I eventually was given steroid cream for the rash and after a period of it being extremely angry looking it did eventually fade. This made me feel so much better and I was able to come of the anti-depressants. Since that time, four years ago, things have been pretty quiet, I still have days of joint pain which usually start with the feeling that I am coming down with a cold. However, the joint pain may only stay with me for a couple of days. Back in November last year, my periods became very erratic and extremely painful, I have had four children and the pain was like labour contractions. I was tested tfor infections etc and all the results came back clear. I didn't think that Lupus may be a factor in the change in my periods and still don't as I didn't actually mention Lupus to the doctor at that time. About 3 months ago, I noticed a small area of a rash on my face so I went back to the doctors and had the screening test for Lupus and the results came back that I had SLE Lupus. The rash has been controlled with steroid cream and I now have an appointment with a Rheumatologist. Some of the other symptoms I have experienced is tummy cramps and what may be considered as IBS. This week I have experienced the freezing cold hands, then later that day flu like symptoms, aches and pains and lethargy. However today I am feeling OK. Part of me wonders whether I have Lupus and perhaps it is a very mild case as I am not taking any medication.

If any of you can give me some advice, especially on how I handle the Rheumatologist appointment. I am a person who very much masked over things especially if on the day everything is hunky dory - if that makes sense.

Thanks to you all in advance!

[Calafia]

Hi,

I didn't have much going on with my skin except one little spot, but everything else you describe sounds familiar including wanting to downplay the symptoms especially if I recently was having a good day.

Suggest keeping a log so when you have your appointment, you can refer to in writing of how you are feeling. If nothing else, to remind you how you did feel and not to be talked out of it.

Also, if you are brushed aside, find another doctor. There are many entries here where people didn't think something was right, but they knew something was off.

I take hydroxy and this really helped with the sharp joint pain. I also started eating non-inflammatory foods about 1.5 years ago. HUGE difference in how I feel in regard to the burning in joints and fatigue. I read a book called Wheat Belly explains why food increases inflammation in your body and it has a list of what to eat regularly, what to eat rarely, and what to stop eating. Not trying to sell a book as I checked it out from the library as was grasping at straws for things to help. I also recently went to a nutritionist because I wanted to make sure I'm not creating other health issues following this approach. She tweaked my acceptable food list and added a few things and I feel even better. Perhaps have them check your Vit D too when they are doing more blood tests. My doctor told me my level was low but fine. The nutritionist said no, too low and am starting liquid Vit D supplement.

All the best,

Calafia

[Hidden in reply to Calafia]

This sounds good Calafia! I am going to look at the book... I hope you don't mind me asking, where whereabouts are you? Thanks

[Calafia in reply to Hidden]

Hi Nikki, From the West Coast in the States. Do I type with an accent? So thankful to connect with others around the world! Calafia

[Paul_Howard Partner LUPUS UK]

Hi sleepy-head,

If you would like I can send you one of our free information packs? It has useful information about how lupus is diagnosed and how to get the most from doctors appointments. If you would like one, just send me a private message or email [e-mail] with your name and address.

[IrishLupie]

Hiya. First off, welcome to the forum and I'm sorry you have to be here. I never got skin symptoms so I can't comment on those but the achey joints and freezing hands I can identify with. You might have Raynauds phenomenon which causes cold hands and feet due to decreased circulation. If that turns out to be true my advice is keep your hands and feet as warm as possible, wear gloves in every season but summer. It may seem like I'm overdoing it but I now have scar tissue on the backs of many of my fingers where there is no longer any circulation at all. I can't say for sure that that's due to negligent hand care, and I've never met another Raynaud's case with it but it's not a chance you should take. I'm not trying to scare you, sorry if I put you off a little.

If your tummy cramps can't be put own to IBS consider asking about mesenteric adenitis. It's a scary sounding name for something pretty much harmless. I suffer with it on a randomly recurrent basis but there's nothing to worry about with it. Basically I get awful tummy pains and cramps for about 3 days then it goes away and I'm fine again. It's caused by some sort of infection in your body that results in the swelling of the lymph nodes around your abdomen. There's nothing actually wrong with the lymph nodes, they're just a little swollen from trying to fight the infection, the infection doesn't target them, the swelling is just an unhappy by product. But ask about the tummy issues in your appointment

As suggested keep a symptom diary of everything you experience, severity and duration as well as dates. Go in to the appointment with a list of questions, not just in your head, write them down so you absolutely won't forget. There's nothing worse than leaving an appointment and just outside the front door realising there's something really important you forgot to ask. Also, don't be afraid to ask questions of the rheumy and ask them to explain anything you want. It's their job to put you at ease and answer any questions you can come up with. A lot of people are shy and nervous the first time and as a result get put on things or have tests done they don't understand for reasons they don't fully know which can be unsettling. Your rheumy might explain everything to you from the word go but if they don't it's your right to ask for clarification and you should, this relationship is a partnership and you have to work together to get the best out of it.

I wish you the best of luck in the appointment!

x