Lupus Community
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This patient support community is for discussions relating to lupus.

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Welcome to MedHelp Lupus Forum<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

WELCOME TO THE MEDHELP LUPUS FORUM

We are a very supportive group of people that share an interest in learning more about Lupus.  You will have opportunity to learn from others who share your concerns. Some have had Lupus for some time, and some are just searching for answers to the array of symptoms they have.  Just know that there are no questions that are too weird, silly or delicate here.  

If you need any help with the web site, just let me know and I'll do my best to help you.  There are a lot of ways you can use this forum.  

One of them is to go to the "Health Pages".  The link is in the upper right hand corner.  Here you will find many of your medical questions answered.

You can communicate privately with anyone by sending them a "message.'  The post and quick notes can be seen by everyone.  

MedHelp also has several trackers you might be interested in.  1) autoimmune tracker 2) symptom checker  3) drug interaction checker & 4) the pill identifier.
To access these:
>Click on My MedHelp
>Click on Health Trackers
>Select the tracker you want

When you post a question be sure the little box on the lower left that says "Add to watch list" has a check in it.  This way medhelp can notify you of any activity on you post.

Your community leader,
KaraJo
Related Discussions
13 Comments Post a Comment
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Avatar_n_tn
how do i make a new post?
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434278_tn?1324709825
Hi and welcome to MedHelp.  To make a new post, go almost to the top of the page and click on the button that says "post a question".

Let me know if this doesn't work.

Kara
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Avatar_f_tn
Hi,

I just started on this forum yesterday.  I posted a question without checking the add to watch list box.  I was asking about the strange cold, slight numb, slight burning sensation on my leg.  Is this fairly common?  It is a new symptom for me.  I have been diagnosed with Lupus for 10 yrs.  I posted a very long reply to "aussie mum"just a few minutes about what has helped me have mild symptoms until recently.  It may be that changing the brand of supplement I use caused me to have a re-lapse and have new symptoms, I'm not sure.  Please read my reply to her and tell me what you think of the natural supplement I have used.  I am not trying to sell anything, only help others.  Have you heard of this being used for Lupus?  Have you tried it?  Do you know of any side effects that I am unaware of?
Lauren 38
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1132574_tn?1271676066
Hi Karajo-

I'm back.... I made an appt with a rhumatoid doc for March 2nd. As you might recall I was the girl that had that funky ANA result- cytoplasmic speckling of unknown significance and am being treated for Lyme too. I had one pos and 3 IND's on my western blot. I get re-test results for lyme tomorrow. I'm just gettign so frustrated. Ever doc I see find something wrong yet no one knows for sure what it is that's wrong with me!

Now my primary and neuro #22 said no to lupus- no swelling ,no rash, not tired , labs are all ok. But neuro 1 suggested I see a rhumatoid and now my podiatrist says so too b/c he noticed some Raynauds going on at my visit on tuesday. So I say why not! So I'm asking my primary on monday to see a rhumatoid. I already made an appt with one that I found on RateMD who got really great reviews.

My podiatrist suggested that I see a rhumatoid for further testing given I saw no tick bite. I also read my bp med could be involved with Raynauds too, or make it worse. Another new development is what I think might be a swollen salivary gland on the floor of my mouth. A soft lump that does not hurt at all... I'll be asking my primary about that on monday or going to the dentist too.... My symptoms started on Oct. 26th out of the blue, now almost 4 months ago and it has been one weird, annoying symptom after another. They all come and go. One goes away, another comes, and then they other pops up again 3 weeks later again.  Things come and go and vary even within the same day. It's crazy. So hopefully some doc will soon figure out what is causing all of this...

Is it normal for the first flare if lupus to last 4 months constantly and for different symptoms to come and go pretty frequently?

You had said to help get a positive ANA, I should get some sun first. Well, I live in PA and we are still snow covered here thanks to the last few blizzards! Can I sit on the sofa where the sun comes in, is that enough? and for how long do I need to do be in the sun?
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1224706_tn?1267223743
Hi Karajo, I hope this post finds you doing as well as can be expected. My name is Crystal and I am hoping you might be able to help me with these symptoms or at least tell me how to post them to the medical experts on here for their professional advice. Hope to hear from you soon. If it were not for all the symptoms being actually physical I might be inclined to think maybe I might be losing it...lol.

I'm not really sure how to go about this so I am just going to post my symptoms and see if anyone out there can help with info, suggestions or whatever. I am a 45 year old female. I have had these particular symptoms for about 6 or more years. I have been diagnosed with Fibromyalgia but I have other symptoms that involve my vision(eyes), face, mouth and scalp. I have what I can only describe as flares because the symptoms come and go. I have little blisters that come up on my scalp and my face. My mouth gets these slits in the corners of my mouth and get scabby kinda like a cold sore on ones lips but not one. Just slits in the corners. My mouth stays dry ALL the time and I have to have a container of water or something with me at all times. I have been to a Rhumetoid Dr. but all he seem to want to do was address the fibro symptoms so I quit going to him. I have also been to a dermato;ogist who says she thinks what I have could be something called a sub-cutaneous connective tissue disorder and that she couldnt help unless I came to her when the blisters first form That's hard to do because when they come up it bothers me and I scratch the blister, then they become scabby/scally sores. When I pick at them sometimes little sandy type beads come out of them. My mouth, in addition to the slits in the corners, or my tongue I should say, burns sometimes. I have been told by so many others that these symptoms sound akin to the Lupus family and that the problems with my mouth and eyes sound like Sojrens syndrome. I think I spelled that right, not sure. Can someone PLEASE help guide me in the right direction with all this ?. Maybe someone out there is experienceing the same things. Either way, PLEASE HELP !
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434278_tn?1324709825
Hi Crystal,
I apologize for being so long in writing back.  I've been busy painting the house and have been really tired.

I have  few questions.
Have you been tired, exhausted>
Do you have joint pain?
Have they done an ANA test?
Do you get these sores as a result in being in the sun?
Has you white blood count  or anything else been "off" in your lab work?

Sorry to be so short, I'm really tired and not thinking very clearly.  Hopefully I can be more thorough at a later date.  

God bless, praying for you.
Kara
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Avatar_f_tn
Help with this site please -- just posted question to Lupus Community but then found "Doctor/Answers".  Does one have to post a question separately there (and if so, how?)?  And track answers?  Yeah, I'm a little lame with the boards!  Thanks.
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434278_tn?1324709825
Sorry it has taken me so long.  I'm having problems w/ my internet.

Welcome to MedHelp.

I think in order to post on the doctor's forum, you would need to pay a fee.  But the other forum is free.  Mostly, it is people who either have the illness or are very knowledgeable about it.  There are times when Doctor Nicholsen comes on the general forum and answers questions.  He runs a research clinic and has interest in autoimmune disorders as well as fibromyalgia, chronic fatigue, etc.  
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Avatar_m_tn
HELLO, MY MOM HAS BEEN DIAGNOSED WITH LUPUS IN FEB AFTER SHE SPENT A MONTH IN THE HOSPTAL WITH PAIN IN HER JOINTS AND LOW WHITE BLOOD COUNT. SINCE THEN SHE HAS BEEN TRYING TO GET TREATED CORRECTLY BUT IT HAS BEEN A ROLLER COASTER.....NO SHE IS HAVING SEVERE BACK SPASMS.....I VE TAKEN TO HER TO THE E.R. BUT AFTER XRAYS AND STABLE VITAL SIGHS THEY ONLY CAN TELL US THAT IT COULD BE SOMETHING ASSOCIATED WITH LUPUS. IF SO IS THERE ANYTHING WE CAN DO ABOUT THIS OR ANY MEDICATION THAT ARE RECOMMENDED. PLEASE HELP

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434278_tn?1324709825
Hi, your mom is so blessed to have such a caring daughter.  I too periodically have spasms in my back.  My dr. prescribed a muscle relaxer that I only take when the spasm occurs. I know it helps because when the pill wears off I know it.  It desn't take the pain completely away, but it certainly takes the edge off.  

Encourage your mom to stay positive and try not to stress.  Stress, sun exposure and sugar are big triggers.

Praying for your mom, Kara
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Avatar_n_tn
My daughter has lupus.  She had a hip replacement in Sept.  Since then her blood pressure and lupus flair ups are constant.  The doctors are not helpful and I don't know what to do.  Can you help.
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434278_tn?1324709825
From what I understand, anything stressful can cause a flare up.  And surgery is definitely stressful.  Outside of prednisone, I am not much help.  There are others on this forum who are much more familar w/ (what I call) the BIG guns in Lupus treatment.  Try posting your question in the forum.  Go up to the top and click on where it says "Post a question".  

Welcome to the forum.
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1661476_tn?1303199158
Hello everyone,
My name is Angela and I'm 28 years old. I hope everyone here gets the help and support they need. If anyone needs to talk about anything feel free to email me or respond :)

Here's my story. About three years ago I went to the hospital because my legs were hurting really bad. They weren't injured then or previously. They did a blood test that showed an elevated sed rate. That was the only thing that showed up on numerous tests i've had done. After six months of constant tests for lupus, lyme disease,  and thyroid problems I was told it was fibromyalgia (I haven't had any blood tests done in well over a year). It's been three years and things have continuely gotten worse, but I can't afford to see a specialists at all. I now have rapid heart rate, high blood pressure, low-grade fever constantly, small traces of blood in my urine, fatigue, acid reflux constantly (not sure if it has anything to do with the rest), constipation off and on, my lungs are wheezing, i'm A.D.D., and in the past two weeks my face appears and feels like it's sunburned (mainly on my cheeks and noise) when its not and now i have little random bitelooking things on my right side and stomach (but nobody else around me has been bit by anything). I can't help but feel like it's not fibromyalgia (or atleast not only) because I have so many other symptoms that keep coming up. Does this sound like Lupus? How do you get help when you can't afford it and you have no health insurance?

Thank you for reading my post and I appreciate any feedback! :)


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