I am having a lupus "pitty party". Do ya wanna come?

[VT-Chicklit]

I am feeling pretty sorry for myself tonight. I went to the Dermatologist to day to have s stitch taken out from where they took a biopsy last week. I was not too concerned. I doubted that the biopsy would find anything out of the ordinary. I was wrong. My doctor told me today that one of the tests that were run showed that I had Lupus. I have been referred to another dermatologist who specializes in "connective tissue disorders." I guess my case of lupus can't be too bad because my appointment to see her is not until the middle of September.

I don't know too much about Lupus. What I have found out on line explains many of the symptoms that I was getting this past fall and winter. I experienced hair loss, rashes on my face, bad joint and muscle pain and fatigue. I would tell the GP and my dermatologist about these symptoms and I got the impression that they felt I was either exagerating or I was depressed. I WAS NEITHER! I do have a severe case of psoriasis and use immunosupressants to keep those symptoms at bay. They may also have thought some of what I was experiencing was from that.

I feel vindicated but I now need information. Do any of you have lupus? Can you tell me what to expect? I will also research further to find out what I can from the WEB.

 

[miss_thenorth]

I have mixed connective tissue disease. blood tests showed that I have some antibodies for lupus, and some for scleroderma. I hve RA, Raynauds phenomena, low thyroid (hashimotos), Sjrogens and I have alot of difficultiy absorbing vitamins and minerals from my diet. I have been diagnosed for 20 years.

That being said--I have a good life and all it is to me is a label--MCTD.
I'm going to bed now, but will be back online tomorrow. PM me if you want to vent. It's not the end of the world. Hang in there!!!

 

[Blackbird]

What are the rashes on your face like?

I did a search about Lupus when I started getting rashes on my face that won't go away unless I put cream on everynight. Unfortunately I never saved the links. There was also a helpful magazine article about it I read once.. and now I can't remember what magazine it was.

So I can't offer a whole lot of support, except a hug.

 

[hennypenny9]

My boss has Lupus. She has to go get tests, and has bad circulation (raynaud's disease) which causes pain in her fingers and turns them purple. She is always cold. So I'm very sorry you have this. BUT, she also does everything anyone else does. As a manager she works six days a week, nine hours a day. On her feet in a retail store. So although I don't have this, I can say that yes it will impact your life, but it can go on. At least now you know what it is, and can deal it it? Trying to be positive.

 

[keljonma]

VT-Chicklit, my MIL had lupus. She was an RN at a hospital for 35 years before she retired. She had her bad days, but all in all, she said she had a very good life.

ETA: for years she went to doctors who told her to stop being a hypochondriac. I think she fell in love with the doctor who finally gave her a good diagnosis with treatment options.

 

[Dace]

My good friend has Lupus and RA....she has good days and bad days, mostly she does pretty well though. Recently had to go on disability (because of the RA). After seeing the process I would tell you to keep good files on meds, Dr appointments and dates...just in case you need to refer to it later. 7 yrs back it, becomes really hard to remember what meds were tried when and for how long, as well as what tests were run and what the outcomes were!

Best of luck to you!

 

[lorihadams]

I have Fibromyalgia and it's the same thing, all the doctors think you're crazy. I finally have doctors that care. I don't know much about Lupus but I'm sure there are some good websites that will give you some background information. Good luck!

 

[breconbcs]

I have mixed connective tissue disease. blood tests showed that I have some antibodies for lupus, and some for scleroderma. I hve RA, Raynauds phenomena, low thyroid (hashimotos), Sjrogens and I have alot of difficultiy absorbing vitamins and minerals from my diet. I have been diagnosed for 20 years.

That being said--I have a good life and all it is to me is a label--MCTD.
I'm going to bed now, but will be back online tomorrow. PM me if you want to vent. It's not the end of the world. Hang in there!!!

Wow miss_thenorth, other than the RA and low thyroid I would swear you were my sister!

Her first diagnosis was of Sjrogens, then Raynauds, and then lupus to fibromyalgia to it could possibly be scleroderma (my mom had it) but they've never been able to give her a definite which has made the last 8 yrs hard for her and her family financially - she was so bad in the beginning she couldn't work, even an hour weeding in the garden sent he to the couch for the rest of the day. But after lots of research and questioning she's gotten better and just celebrated her first year anniversary back to work.

VT-chicklit, I can mostly offer just and support. Just remember it's not the end of the world. You are still you - you haven't changed just cause they have put a label on what has been bothering/making you sick. It was hard to watch my sister get label after label and get even depressed, she finally let me take her to my mom's former specialist. After talking to him (being reminded of life with our mother which wasn't much of one, my dad mostly raised us) she realized she's just sick, label or not, and she needs to do what she can when she can and when she can't just rest and recupe. But most of all enjoy life and still live it. So she took the time when she felt good to go work on her gardens, lay on the couch the rest of the day if need be. She started to feel better at least mentally and it kept her going for the last 8 years. They moved into an apartment due to financial problems (bil lost his job after she went back to work), but she still comes here and messes with my gardens.

 

[Wifezilla]

Since you are going to be tested for all kinds of stuff, you may as well ask them to check your vitamin D levels.

"A number of recent studies have highlighted the association between systemic lupus erythematosus and vitamin D deficiency. Vitamin D deficiency skews the immunologic response towards loss of tolerance. Adding vitamin D in vitro reverses immunologic abnormalities characteristic of systemic lupus erythematosus.
Summary: Multiple systemic lupus erythematosus cohorts have low vitamin D levels. The physiologic and clinical consequences of vitamin D deficiency in systemic lupus erythematosus are not entirely known. Prospective studies of vitamin D in systemic lupus erythematosus are limited, but most cross-sectional studies show an inverse relationship between levels of vitamin D and disease activity. This suggests that repletion of vitamin D may have benefits beyond bone health for patients with systemic lupus erythematosus."
http://www.medscape.com/viewarticle/579395

 

[big brown horse]

I'll come to the party and bring a big with me.