HealingWell
Search Close Search
☰

noticed something new today

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/19/2011 8:46 PM (GMT 0)
I'm a 20 year old male.

I've posted before so I will just shorten this up I guess.

My symptoms are:

Inflamed and thickened terminal ileum
Whole lining of stomach red and inflamed, however nothing between my stomach and the terminal ileum are abnormal.
Constant headaches, sometimes migraines.
Burning, itching face with redness, sometimes a faint butterfly rash, sometimes the rash burns with a touch
Heart palpitation, increased heart rate, sometimes my blood pressure is higher than average, sometimes it is lower than average
I have low grade fevers every day ranging from 99-100.4 and it can be really scary
I have a lot of anxiety and depression, which I am taking medication for
I am always physically tired, my body aches
When I move or lean over sometimes it feels like I can't, or it feels like I have to work twelve times as hard to do it even though its a simple bodily function.
My eyes feel like they are weighing down my head, and my vision has gotten slightly worse since i've been sick
My skin seems really sensitive to the sun, especially parts of it that are already red
I am extremely sensitive to heat, after I take showers I sweat for at least an hour, or when I use the blow dryer I sweat for a long time after I;m done blowdrying my hair.
I have chest pain that just kind of pops out of nowhere for a split second, or sometimes it;s constantly there.
I'm constantly shaking all the time to the point where I can literally see it when I look in a mirror, or my hands.
And all of these symptoms seem to slowly get worse as the day progresses, until I go to sleep and wake up and I feel a little better but then it happens again.

But today I noticed something new when I woke up I noticed that parts of my feet and almost all of my toes were red/blue and swollen. It really freaked me out.

I am freaking out so bad right now, I just feel so horrible, nobody seems to be taking me seriously and all I want to do is go to the emergency room.
Posted 5/19/2011 10:36 PM (GMT 0)
Are you on any diuritics (water pills)?
My feet swell on a regular bases. They even turn red and blue.
I believe it's called R. Syndrome. Sorry, I can't spell the first part, maybe someone here can help me out with the name. It's part of this weird and wild rollercoaster we're on.
Talk to your doctor about this and maybe he can give you something to help you out. Meanwhile elevate your feet high to help the swelling.
Posted 5/20/2011 12:09 AM (GMT 0)
Well I see a rheumatologist on Thursday next week for the first time. The only meds I'm on are pentasa for my ileum inflamation, clonazepam for anxiety, tylenol for my fevers and benadryl to help me sleep at night. I'm just curious if this sounds like lupus
Posted 5/20/2011 1:10 AM (GMT 0)
I find out in two weeks what my results are. Such fun... (sigh)
Posted 5/20/2011 5:21 AM (GMT 0)
yeah i just want them to do my testing.
i just took my temperature and it was 100.3 and i get freaked out every time I take it because well its a higher temperature than normal.

does having untreated lupus make you have low grade fevers or regular fevers all the time?
Posted 5/20/2011 5:26 AM (GMT 0)
Lupus often generates low grade fevers - try not to worry too much, somehow I find that makes my fevers worse. Best thing I've found is to take some ibuprofen and a nap!
Posted 5/21/2011 4:06 AM (GMT 0)
alright. i try not to think about them but like, sometimes my face and head just burns so much, like I feel so hot.
Posted 5/27/2011 5:17 PM (GMT 0)
Hello AdamDoubleYoo, Wow you must feel terrible. I can tell you my symptoms an what was found. When my body thermostat was off it was my thyroid (Hoshimotos thyroiditis). When my feet, hands, nose and ears get red, blue, or white it was Raynauds phenomanon. Both autoammune. Maybe this will help. Bless you as you search for the answers.
Posted 5/27/2011 9:10 PM (GMT 0)
Does Raynaud's make your hands look spotted? My hands get hot and turn red with white spots on the palms. My feet turn a mottled purple sometimes.
Posted 5/28/2011 12:39 AM (GMT 0)
raynaulds common with lupus especially if your feet or hands get cold. um.. i have a low grade fever all the time. I have the hot face and burning... especially my eyes thats when i can tell i am flaring a bit.
Lupus is very affected by sunlight and heat.... i was told to wear sunscreen everyday even inside. (i do live in CO) my thyroid has been checked a million times and it is fine. so a good lupus test is stand in the sunlight or go for a 15 minute walk. if you get redness on your chest neck face.... when i am outside my husband and kids tell me i have to stay in because they can visually see me going from pale red butterfly to whole head red. lol

if you also have tons of dryness in mouth nose eyes, Sjorgens is another auto immune that can affect you similarly to lupus.
take care
hope you are feeling well soon... do you have a rheumatologist? I have all of your symptoms. it sounds like your body is going into a flare, do you take any anti inflammatorys. i am really really weak when i start getting a flare simple tasks, getting dressedd, lay down, brush teeth, take nap.. it is embarrassing and i thought i was a hypochondriac. or just plain nuts. but apparently it is just Auto immune... everyones best friend.
Posted 5/29/2011 3:32 AM (GMT 0)
i just saw my rheumatologist 2 days ago. when i got there, he told me my primary doctor didnt fax over any of my records. it made me really angry and i started crying in the room, I went through 5 months of tests giving no exact diagnosis, but closer to one, only to have my primary mess everything up. So he is harassing my primary to fax the records. He took literally 8 vials of blood from me. he is testing me for Lupus, Celiac disease, lyme disease and all kinds of other stuff. He wants to do a sweep of all kinds of things.

He said that the redness and rash on my face didn't look like eczema, which I have, so he wants to do a lupus check and if the blood test comes back negative or whatever he wants to do a biopsy of my face.

I'm so hot. all the time, my fevers are every day. and when my body gets hotter, my face gets redder and burns more. my head feels like its going to explode almost every day. i just started a part time job, and i have to inform them about doctors appointments I have, so i wont be able to go to work at those times on each day and stuff. I didn't tell them I was sick when i got hired because I didn't want them to not hire me, I need at least something to support myself you know? I don't know what to do once I get a diagnosis, especially if it freaks me out, I'm already an emotional wreck from the fear of not knowing. i'm just so scared i'm gunna be at work and pass out or get really sick.

i feel like i should tell them but I don't even know what i'm sick with yet.
Posted 5/30/2011 7:25 PM (GMT 0)
I'd wait a little bit and see if you need to tell.
Posted 8/11/2011 9:29 PM (GMT 0)

Lynnwood said...
 Best thing I've found is to take some ibuprofen and a nap!

I just read that people with lupus should not take ibuprofen.

http://www.bettermedicine.com/books/avoiding-common-pediatric-errors/do-not-prescribe-ibuprofen-in-patientswith-systemic-lupus-erythematosus-sle-because-it-can-cause-ibuprofen-induced-aseptic-meningitis

Posted 8/11/2011 9:54 PM (GMT 0)
Well, I've had lupus since 2002, all 3 rheumies I've seen as well as GP & other doctors almost all recommend ibuprofen for the once-in-a-while fevers & inflammations that come along with lupus.

Notice that the article you are referencing is from a book "Avoiding Pediatric Errors" -- ie this is for children -- who very rarely have lupus diagnosed in the first place!!! It isn't from a medical journal or other vetted reference material. I suspect if actual drug tests were run this problem is a rare side effect of ibuprofen misuse.

Cheers
Posted 8/14/2011 4:01 AM (GMT 0)
Sorry Lynn. Googling can be dangerous.
Posted 8/14/2011 11:50 PM (GMT 0)
Does Raynaud's make your hands look spotted? My hands get hot and turn red with white spots on the palms

Couchtater, so it's secondary Raynauds. I thought Raynauds was more with cold than heat. How long have you had red hot palms. My fingers are red too for a few months now.
Posted 8/15/2011 12:07 PM (GMT 0)
Hi!

Take digital pictures of every symptom you can and email them to all your doctors.

hugs and hang tough,

suetoo

Posted 8/15/2011 4:59 PM (GMT 0)
Penn, My doctor told me it can happen with temperture changes hot to cold, cold to hot.

The weird thing about it all is my hands feel hot to me but they are cold to the anyone who touches them.

Posted 8/15/2011 9:50 PM (GMT 0)
Joy
Mine are hot to me and my face too. My face is not red though. My palms and fingers are pink and sometimes reddish and this is already since May. Veins on the backs of my hands seem more prominent sometimes too Does yours come and go or is it pretty steady? My temps are below normal and people say my hands are not hot.
Posted 8/16/2011 12:08 AM (GMT 0)
The veins on my hands are easier to see... not raised, just darker.
The flares come and go. Sometimes it stays for awhile. From Feburary to July it was day in and day out. The plaquenil is helping in making it less painful and frequent.
My body temp is normally at 97.1. If it gets up to 99 I'm very sick.
My face sometimes feel like it's burning when I'm under fluorescent lighting or the sun, too.
✚ New Topic ✚ Reply