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MicRoMediC
04-20-2009, 11:05 AM
Yesterday was a bad day. I was hurting really bad and finally laid down and was so bad my boyfriend had to help me sit up to take some pain meds. Then the hives started on my neck. They went away but today I started with the hives. It's really frustrating sitting in class and not being able to do anything about the hives or pain. I started crying on my boyfriends shoulder and poor thing he's trying to be there for me but he just doesn't understand.:hissyfit:

mountaindreamer
04-20-2009, 11:26 AM
hi micromedic,

oh, i am so sorry to hear about all of your symptoms right now...you must be extremely uncomfortable, and possibly scared. I do not deal a lot with the skin issues associated with lupus, but there are several people who do...i remember a thread where they discussed some of their remedies, i will go through and see if i can find it. I will get back with you, but i also know that others will be along to help.

i break out in hives if i take a non-steriodal anti-inflammatory (NSAIDS), so i avoid them at all costs. I have gotten IV of benedryl at the er, and they went away.

hang in there, we will see if we can help you through this. I know your boyfriend does not understand....but remember, the only way to understand this is to have it, and we don't want our loved ones to have to go through what we do. Let him understand at the level he can, sounds like he is really trying, and is probably frustrated because he can't fix it.

I'll be back if I find that thread....but i am definitely the best at this computer stuff.

AyahsClan
04-20-2009, 11:43 AM
...yeah I was wondering about her meds too.

Don't despair dear one this lupus is sneaky and complex yet can be as simple as finding out what works and what don't. Keep doing research, trying different meds with your doctors and keep track of what seems to effect you for the better and for the worse.

Narcotic pain relievers are an absolute last resort for me because they cause me allergic reactions and more pain in the long run. Some foods cause allergic reactions in me and can trigger a lupoid reaction.

We understand and are here for you, we been there. The pain sucks and as an Appalachian granny once said; "Ah hate it fer ya"

mountaindreamer
04-20-2009, 11:54 AM
hi micromedic,

i found some information for you to look at, and see if any of the various situations apply to you.

first, under Lauri's Loungs, there is a sticky entitled: "Home Cure 101 for Lupus" by Oluwa. In this she discusses the different ways we can deal with the various symptoms of lupus.

second, i found the following threads, so check them out.
These are all found in the section "lupus symptoms"

"Raised Rash" found on page 7
"Itchy" found on page 8
"Can a rash appear" found on page 10

finally, there is a very informative post by Saysusie and it can be found under "lupus symptoms" and the thread is titled "Exercise induced Rash" and Saysusie's post is dated 2/24/09. As always, she answers so many questions and i always learn from Saysusie's posts.

hopefully you will be able to relate to these different types of rashes and their possible causes, and even more, i hope you can find some relief.

Oluwa
04-20-2009, 12:11 PM
Hi MicroMedic...

When I was lumping and bumping up with hives for several months...no known cause was found. Very rare the cause can be found, so says my dermO. I was prescribed...Singulair and Clarinex by day and while I slept Xyzal...

Have you been under any unusual stress, anxieties....exam time at school...sometimes just being in pain, fretting over it is enough stress to start the lumps forming...

I usually get one huge, like a small peach stone... one right in the crack of my neck, where my jaw ends...at the edge of the hinge... below the earlobe when I am stressed....

I still get pea size hives on my hands and forearms...usually they surface when my husband returns...I literally watch them grow...hummm..connection or allergic reaction. For these I just pop OTC Claritin...2 pills...

Keep the showers cool...heat aggravates them. If can try ice packs too...clip the nails to the quick...

Sometimes I think just having an autoimmune disease can cause a reaction to one thing one day and not the next day....

Itching can be maddening...I was almost headed for a straight jacket, so do seek relief before it gets to that point. With my hives I had rashes too, and it consumed my every thought for 6 plus months...

Be well...squeeze.
Love,
Oluwa

MicRoMediC
04-20-2009, 04:18 PM
Thanks for everything guys! I'm sorry I got a little whiny, I was sitting in class and my lip started to swell and I started to get fed up with it.

I started with the hives ten years ago and go through cycles of a few months of random hive break outs and then it'll go away for a few years and then come back. They just started again last month. It's really annoying. Sometimes they'll cover my feet or hands or face or swell my eyes shut. They start as little ones then end up as a big blob. They hurt more than they itch and don't go away with antihistamines. I have reactions to a lot of things! I have a major latex allergy and that's not a fun thing. Also the other day they drew more blood and used paper tape instead of a bandaid and by the time I got home I had hives all under the tape and all over my feet.

My boyfriend is great and he's really trying to be here for me for anything he can, but I do think he's frustrated that he can't help. With me crying on his shoulder last night he just kept asking me what was wrong but I just kept crying. I didn't want to sound like I was whining and every time I hurt I b***h about it because that's no way to live. It's just been getting to me lately because they just diagnosed me with this two weeks ago even though I've had symptoms of it for ten years now. And the plaquenil has been messing with my digestive system and I haven't been sleeping well. I told my boyfriend I'm a lemon and he needs to go find himself a peach or a cherry. LOL. He replied with, "I like lemonade." Since we've started dating, in January, I've had my gallbladder out, my wisdom teeth removed in an OR while intubated, diagnosed with Lupus and the Lupus Anticoagulant Antibody. Poor guy.

The only med they have me on right now is Plaquenil, my doc wants to wait and see how this works for me and then we'll go from there. If I have another clot or 2 or more miscarriages, they're going to put me on blood thinners. I'm also taking birth control. I know that's not recommended but before I went on it, my periods were so irregular and heavy and painful that I swore I'd probably never come off of it. This may be due to the clotting factor that I have that I also just found out I have.

From what I've researched about lupus, it's a wait and see game. As the symptoms come up, treat them. Is this what everyone else has been experiencing?

Anyway, thanks again for all the great advice. I know I'm new here but it's great to have support from y'all and people to talk to that know where I'm coming from. I don't have many friends, let alone people I can talk to about this.

luvpinkpeeps
04-20-2009, 04:24 PM
Oh those hives are so awful :(
I can remember getting them whenever I was in a very cold air conditioned room...

Hopefully this is a short lived stint and you can get relief soon.

wrightrs
04-20-2009, 04:40 PM
So sorry hope you feel better soon!!!!

mountaindreamer
04-20-2009, 07:16 PM
hi micromedic,

i hope your day has gotten better.....you pegged living with lupus...it is a wait and see game, the symptoms come up, you wait to see what they are going to do, then you go to the dr. and get treatment. wish it was different, but it is what we do. this is one reason that this forum is so important, as people face symptoms, they can ask questions here, and others will come along to verify that it might be lupus, or whether they should go to the dr.

sounds like an angel sent your boyfriend to you....he must be a straight up guy, who will walk by your side through this...way to go, girl.

MicRoMediC
04-21-2009, 04:32 PM
This week has been so hard!

It took everything in me to get up and go to class today. All day, I just didn't have the energy to do anything. Everyone is just like "wake up!" I just want to scream that I CAN'T! It's so frustrating. My body hurts so bad. I had to deal with hives all day yesterday. Today I'm so lethargic and don't even feel like getting up out of bed to eat dinner. My head is so foggy and I can't even think. I passed up my exit on the freeway trying to get home today.

Does anyone have any suggestions on foods that might help my energy level?

Thanks to everyone for all the great input and thoughts and prayers!

AyahsClan
04-22-2009, 12:02 AM
This week has been so hard!

It took everything in me to get up and go to class today. All day, I just didn't have the energy to do anything. Everyone is just like "wake up!" I just want to scream that I CAN'T! It's so frustrating. My body hurts so bad. I had to deal with hives all day yesterday. Today I'm so lethargic and don't even feel like getting up out of bed to eat dinner. My head is so foggy and I can't even think. I passed up my exit on the freeway trying to get home today.

Does anyone have any suggestions on foods that might help my energy level?

Thanks to everyone for all the great input and thoughts and prayers!

I'm sorry you are suffering so horribly. We really do know what your going through especially with people who don't understand. Please be careful, I have had to modify my driving patterns because of lupus. My mom is 80 and sometimes it takes both of us to get around, and we live in a small little town with 1 main road. I've learned to drive extra cautious.

I can't say these things actually give me energy but they are safe and do help. If I can't eat I try to get some fresh pressed organic veggie juices, or make them myself when I have the energy which isn't often. The more living foods I consume the better I feel BUT they don't take the place of meds and staying close to your rheumy.

My favorite drug for daytime alertness is Provigil. Welbutrin also has an energetic effect although it is an antidepressant.

mountaindreamer
04-22-2009, 04:55 AM
hi micromedic,

i too have had to adjust my driving habits. I have really slowed down, i don't make any hasty decisions, i don't talk on the phone while driving....trying to stay focused on the road and my directions.

As far as energy, my dr. has me giving myself an injection of vit. B each week. I really think this has helped.

Also, red meat is avoided by some members, and i stay away from processed foods.

good luck, hope today is better.....remember, protect yourself from the sun and other uv rays.....in your classroom, is ther fluorscent lighting? if so, this could quickly make you feel badly, so protect yourself.