Questions about strange symptoms

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luvmybabies
Regular Member


Date Joined Oct 2006
Total Posts : 107
   Posted 5/9/2007 8:32 PM (GMT -7)   
I know you guys gets posts like these all the time but I was urged to ask questions so here we go.

I was dx with fibro about 2 days ago and my rheumy is running blood tests for lupus and other autoimmune disorders I will get those results in 2 weeks when I see her again (she kept mentioning lupus when explaining things to me). One symptom she was curious about is my hair falling out. I was wondering how this goes with those of you who have this symptom. My hair falls out in clumps when I brush it, wash it, or run my fingers through it. I do not have bald patches or anything but it has been an issue I have had for about two years. Does anyone else have this? I also get these sores on my scalp that are really gross. Umm they are about the size of a nickel and are basically scabs that kind of ooze (sorry I know that is kind of yucky to read) and last weeks or sometimes months.There is no scaring after they heal. I always thought this was an allergic reaction to something, but I haven't been able to figure it out so I have always dismissed it.

Another one thing that has been bothersome has been this thing on my chest. It looks red like a sunburn. It doesn't hurt or feel any different, but I haven't figured out how to make it go away. I am not in the sun very much so I know it isn't a sunburn but it is fairly new so I thought I'd ask. It isn't on my face or chin just in the "v" area between my shoulder blades.

I didn't mention this stuff to my rheumy because I really didn't think it had anything to do with my problems, but after reading about symptoms I started to wonder. I also at times get a strange itchy "sunburn" red rash on my hands and arms. The rash tends to be splotchy but not raised at all. It usually only lasts like a few hours but is uncomfortable anyways. Does any of this sound familiar? I will of course bring it up with my rheumy on my next visit but I thought I would ask you guys who deal with Lupus everyday.

Thanks for your time,

Stephanie

bhkhhh
Regular Member


Date Joined Jul 2006
Total Posts : 245
   Posted 5/9/2007 9:32 PM (GMT -7)   
Stephanie, I am very new to lupus. I have tumid lupus & they suspect sle. I have been losing hair for a couple of yrs also. I do not have bald spots but sometimes I worry because I get real thin. I also have like a scalp rash at times. I also have the rash on my chest in the v line then it spread to my breasts. The only way I was dx'ed was I went to dermatologist & she biospied the rash. My ana was too low to dx lupus. I have been dx'ed for about 3mo & they are just noticing some of my labs are showing up as lupus. I do not know if you have lupus but if you feel you do, don't give in to the docs. It took me dozens of docs. They all suspected it but they would not give me the meds for it. It took me a yr of being deathly sick & 2 good docs to confirm what I knew from the begining. You really need to let your doc know all your symptoms. I was guilty of this too. This is a wonderfull forum, they have really helped me while waiting on my dx. I'm sure you will be hearing from others who have more experience with this.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/10/2007 7:44 AM (GMT -7)   
Stephanie, I'm glad you came over here to ask some questions. Regarding the hair loss, a lot of us with lupus experience that. I sometimes have chunks come out or it's covering my hands after I wash it, etc. I also get sores on my scalp, but not as big as yours. It is possible that the sores on your scalp are discoid lupus. A dermatologist might be able to help you with diagnosing that.

It's interesting that you mention the V rash on your chest. There was a topic here recently about the butterfly rash and it came up that most people who responded also had the V rash like what you are talking about. I also have that and at first I didn't mention it to my doctor either.

It is really important to mention every single symptom to your rheumy - even if you think it isn't related. Also if you can get pictures of your rash or the sores on your scalp to show your rheumy, that is sometimes helpful.

Like bhkhhh said, if you think you have lupus in addition to fibro, don't give up looking for answers. A lot of us had to go through several doctors and sometimes wait years to get an accurate diagnosis. Sometimes it's because lupus can progress slowly over time and the labs don't always reflect the illness, especially in the beginning. But, if I remember right from your post over in fibro, you already have a positive ANA and protein in your urine which can both be present in lupus. It may take a while for your rheumy to sort through all of this and give you more answers.

Feel free to post here all you want - there are other people here in daignosis limbo too. We'll try to answer any questions and we'll be here for you if you are having a rough day.

Take care and let us know how your labs turn out.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



luvmybabies
Regular Member


Date Joined Oct 2006
Total Posts : 107
   Posted 5/10/2007 11:57 AM (GMT -7)   
Thanks for the replies. I didn't mention it to my dr because I really didn't consider that stuff symptoms. I always just though it was weird but never gave it a second though. My rheumy is awesome. I chose a female dr this time because male dr (no offense to anyone) seem to be unwilling to admit they don't know and blame my symptoms on something psychological. She listens to me and takes me seriously which was a nice change from the rest of the drs I have seen. Yeah I have a slightly high ANA and protein in my first urine test. I don't know how the 24 hour test they did came out since I checked myself out of the hospital after the third doctor told me my symptoms were psychosamtic. I just gave up for a while. I spent a while questioning myself and wondering if it could actually be in my head. Took 3 months off of work and lost my house. I am on the verge of losing my job becuase I have missed so much work. I have tried to live with it but after last week which was horrible, I decided to try going to the dr again. I just can't deal with the pain. I am not sleeping well and am not able to eat (no appetite). When I do eat I feel sick and get horrible heartburn. Most of the time my pain stays at a 5 or 6 which I can deal with but last week I was at a 9 or 10. I'm just tired of hurting and not being able to play with my kids. I'll get the labs on 5/21. I will let you know how it goes.

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/10/2007 5:33 PM (GMT -7)   
I'm so glad you have a good rheumy - that will make all the difference in the world. Also know that not sleeping and loss of appetite can be symptoms of lupus, so let your rheumy know about that too if you haven't.

I was really frustrated to hear how you were treated in the hospital - how awful. I get very frustrated when docs so easily pass things off as "in your head" or as depression/stress/anxiety.

I'm wondering if your rheumy can write you a release from work to give you a break without the fear of getting fired. Maybe she can write a release until you get your results back on your labs. You also should have FMLA (family medical leave act) and if you use that your employer has to give it to you and can't fire you; however, a lot of places don't pay for your time off though.

Hang in there and if the pain doesn't get any better, it might not hurt to call your rheumy and let her know how bad the pain is.

Take care
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



luvmybabies
Regular Member


Date Joined Oct 2006
Total Posts : 107
   Posted 5/12/2007 8:10 AM (GMT -7)   
Hi, I am out of FMLA time for the year. No release from work is available believe me I have tried. I am trying not to call my rheumy and can't really afford meds right now anyway so I am living without pain meds. I haven't slept in two days and haven't been able to eat either. I am pretty much ready to give up at this point.

I had a question. My dr asked me about mouth sores and I said i didn't get them. I was thinking last night (while looking at my rash that I thought wasn't a rash and freaking myself out) and I have gotten sores in my mouth from time to to. They don't really hurt much unless they are on my gums (those are the worst) but I have been getting them for like 5 to 10 years so I really don't think they are related. So my question is what do the mouth sores associated with Lupus look like? Do they hurt? Do you get them on your gums?

The other thing I am worried about is my 6 year old. She has been complaining about her legs and arms hurting for a couple of months now on and off. I always give her motrin when it happens. Should I have her looked at by her ped? Is this something she can get from me?

Sorry for all the questions I am just looking for things I need to mention to my dr.

-Stephanie
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