Lupus Support Group

Ok, so my daughter who is 18, diagnosed 1 year ago with mild to moderate Lupus,(how funny is that?) went to the rheumat. yesterday and with fingers so swollen they look like sausages, so painful she can not hold a fork to feed herself much less brush her hair. Her hips are in so much pain, she can hardly sleep. I ask the doc about the last set of lupus bloodwork, and she tells us well this really looks like mixed connective tissue disease. I am like what? she doesn't have lupus? No it means she has more than one autoimmune problem. Then I come home and google it, now I am really depressed. What kind of life is she to have? Then the doc tells her to wear gloves for her Raynaulds, what about the fact she can hardly use her hands most days? If anyone has any insite on this, please comment. Thanks.

It seems like most people with lupus also have another autoimmune disease. I have SLE and APS (a clotting problem). I have had 3 strokes. I know a lot of people have SLE and Fibro. I guess when your autoimmune systems acts up, it can go after everything.

I have had my hands so sore I couldn't brush my hair or cut up meat while eating. Hopefully this will pass quickly for your daughter.

I hope they can figure out what works best for her.

Ali

Rondar, I was in my mother of all flares last summer (took 10 months to get better) and was Dx'd with MCTD. Confirmed is RA and Raynauds. I could not even pick a cup up and sleep was impossible. The pain that woke me up every night was unbearable to the point I wouldn't even go back to bed because you know what's gonna happen. MCTD just means she presents with symptons of more then one disease but they'll treat her symptons and I know you hurt for her but she will get relief. The flare just needs time and meds to run it's course. The Raynauds is down played by the docs. I had it so bad this past winter I was housebound and given blood thinners and wrist splints, which help alot at night. It is highly painful. There is also a Raynauds forum here you can get good info at.

Hugs to you and your poor daughter.

I really feel for you and your daughter. This must be hard for u both. You have my sympathy. I'm 52 and was diagnosed with fibro approx 8 months ago and had to beg for further testing and it showed a false syphllis, which prompted her to send me to a rhuematologist. He diagnosed me with MCTD (lupus & schleroderma) and signs of reynauds. They were sooo mean, rude and totally unsympathetic. I was in shock and asked trepidly what this was. He told me less than the internet explained to me later. My half sister has had schleroderma for 12 yrs. She has both types (skin & organs). She has good days and bad days. She does not have fibro or mctd. I don't know what medications she is on but I'm going to find out. I'll let you know. I'm new to this forum, so I'm looking for hope and answers myself. I have panic, anxiety disorders with agoraphobia (intellectually intact), fibro, mctd with lupus and schleroderma, herniated discs with bulges, osteoarthritis, hiatel hernia, gastronitis, awaiting incontinence surgery and have had hives for 26 yrs. and probably more illness's I don't even know about. I promise, I'm not feeling sorry for myself. I'm on klonipin, morphine sulfate, lyrica (that really helped and only been on it for 2 1/2 weeks), hydrocodone, prilosec and temporarily vesicare. Hoping soon I can get rid of the hyrocodone (kills your liver). The lyrica and ms helps longer and better. The bottom of my feet feels bruised and hard and painful to walk. Walking is good and stretching (yoga), I use a rolling pin on my thighs and calves, sometimes my electrical circular foot massager on my thighs and calves. For my hands I use a squeeze ball and keep busy painting and sewing. I make myself leave the house as much as possible. I ignore the looks from my family ( a large one at that) and friends and pray they don't ever get this. I will pray for your daughter and you. God bless you both. Hope this helps a little????

MCTD, at least according to my GP is an even more general catch all term - he told me I have MCTD or SLE, but made it sound like the different was primarily in the name. He's very up front that even the best specialist don't totally under stand autoimmne disease and the name is sometimes just a formality, but the treatment is often the same.

My Raynuald's was ignored until I began getting blood clots in my fingers and toes. My GP put me on a calcium channel blocker medication and it I had zero Raynaulds symptoms 3 days later! I take it all winter long, and sometimes in the warmer months because my office is very cold.

I'm sorry your daughter is suffering so much right now -- I hope they are able to get her on effective treatment soon!

Bests,

Jessica

Hi Goochins....welcome to this great group.....I have both central nervous system vasculitis Lupus and Fibro.....my daughter is in the diagnostic stages of whatever she has. I believe that she has MS and possibly Lupus but who knows were trying to get her into my Neurologist as he is fantastic. I wish all of you ladies well.

Eva

Does anyone know of this calciphylaxis for schleroderma. Been on dialysis for over 16 years and the veins are calcified and not getting circulation to my legs. Excruciating pain and can't walk. Anyone out there with knowledge of this drug, please contact me. Thank you and God Bless you all!

I don't know much about this but did look this up on the internet.....it seems that they use a drug called "Chinacalcet" to help with the calcification. I sure hope that you get some answers. I wish you all the best.

Eva

Rondar, I am 23, and have MCTD (Lupus, Raynaud's, and Rheumatoid Arthritis) along with PCOS (Polycystic Ovary Syndrome), POTS (Postural Orthostatic Tachycardia Syndrome), mild eczema, and I'm sure more problems I haven't even discovered yet. Your daughter's sympotms sound just like mine, honestly. My hands swell like that a lot, and most days it's a struggle to get dressed. Keep up hope, though, she will still have a good life, it's all in her perspective. I know that it's hard to watch her suffer, but at the same time, with the thoughts of MCTD out there, you might be able to get better treatments for her. I'm also on a calcium channel blocker(Adalat) for my raynaud's, and though I still have the symptoms (I've been on it for a few days now), I am noticing some major improvements in my hands. Don't feel like things are doomed for her now. Honestly, my grandmother always tells me "At least it's not stage 4 cancer." Keep your hopes up, and know you and your daughter are in my prayers!

Erin

My brother 24 and was diagnosed a couple years ago. I was just wondering if you were ever misdiagnosed before your diagnosis with CFS or Fibromyalgia.