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Posted 6/13/2008 5:02 AM (GMT 0)
    Hi everyone,  I am new to the forum.........Just registered today...........more or less out of frustration.  I was diagnosed with Lupus over 3 years ago now.............Moved from one Province to another and Just recently for the first time after over a year, seen a new DR. here.  I went off all my meds just before we moved here, (BIG mistake).

   What brings me to this forum is I have many symptoms on an ongoing basis,  but one that is new (within the last year) is that I often get Very red itchy warm lumps in different places on my body......even in the palms of my hands and soles of my feet.  My hands and feet swell up like balloons. and get so darned itchy they burn.  I tried explaing this to my dr today and she looked at me like I was crazy.  I have read in different sites that this can be a problem with Lupus...but I don't know anyone and have never even talked with anyone other then a dr. about Lupus...........So I kinda have to rely on what they say is "normal" for my lupus or not.

   So frustrated....worried and a little confused............was hoping there was someone else out there that has experienced these symptoms and can reassure me I am not just crazy??..........lol

Thanx............Looking forward to a few responses confused

Posted 6/13/2008 11:17 AM (GMT 0)
Hi sweet, Welcome to the forum... I get a rash and it becomes bumpy on my arms I also have the rash on my face, yes it does become itchy when I flare. Are you seeing a Rhumy? on any meds. I'm sorry you are dealing with this... There is alot of good people and alot of info. on this sight.Good place to be. Debbie
Posted 6/13/2008 12:14 PM (GMT 0)
Thanx Debbie. Yes I am seeing a rhumy. Was my first appt. with this one though as I have moved. And as I said, I almost think she was thinking I was crazy. I am back on Plaquinel 400mg as of yesterday after being off it for over a year, so will be a bit for it to help any.........also cytoxan, Cumadin, and Naproxin. I am not a meds gal, I have a hard time convincing myself that the side affects of some of the meds are any better then the Lupus itself. But alas...................when I have a bad flare as I have been going through for about a month now.............It is a gentle reminder that yes..the pills aren't so bad after all.

Was thankful to find this forum though. Never talked with anyone else who has Lupus. Thinking I was in a bit of denial and thinking I didn't need to talk. I have a husband and two wonderful kids who are absolutly fantastic when I am having a flare up..........But at times I Feel they just don't understand exactly just how bad the pain can be. And I don't like to tell them, I always think the more I can hide from them the less they have to worry about.

So thank you for your response and I look forward to chatting more with people from here and reading others posts. Might not think I am just crazy and the only one experienceing things if I continue to read more here.

Leslie
Posted 6/13/2008 4:49 PM (GMT 0)
Hi Leslie . . . Welcome to the forum. I'm sorry I don't know much about the bumps except that I've seen others talk about them too. I hope you get some helpful responses. I think we've each tried going off the meds . . . *sigh* Have never seen anyone say "Gee, I'm glad I did that!" . . . I've done it too . . . and was sorry. But at least I was positive that I really needed to continue using them. I hope you are feeling better soon. Blessings!
Posted 6/13/2008 5:17 PM (GMT 0)
Hi Leslie

Welcome to the forum. I don't know about the bumps either but I hope the meds. help in time. I do know about going off the meds. and its not a good idea.

Linda
Posted 6/13/2008 7:12 PM (GMT 0)
I know EXACTLY what you are talking about! No one ever does know what I am talking about. Doctors look at my crazy. I made a post on here a while back and everyone thought I meant a rash, but its not. It lumps--they itch, they burn, they are hot to the touch. In my hands, in my feet...i get them on my face sometimes too. The last month I havent had them. I was so happy. Until last night. I think maybe I ate something I wasnt supposed to. This morning my hands are 2 times as big and there are itch lumps in my palms. Then I went to sit in my car . I thought I was sitting on something. SO I got up and checked--nothing. It turns out I have one in my left butt cheek now!! Thats never happened!!

I dont know what to tell you other than I know what you are talking about, And I share the frustration of no one knowing what you mean.

I can say I believe that the month I went without them, and swelling among other hundreds of symptoms I get, had to do with my 100 percent "attack" I went on . I did the following:

- Increased my water and tea consumption.
- Kept my body constantly moving--lots of outdoor walking.
- Went on a STRICT nightshade free diet. If you dont know what it is research it, it works for the lumps in your face and hands. No tomatoes, potatoes, eggplant,legumes ( meaning no peas no peanuts no beans no soy aka tofu), no red peppers. I stay on the safe side and say nothing thats deep red ( watermelon is okay, cherries no). No sprouts/alfalfa and NO TOBACCO! also no chicken. But lean red meat, pork are okay. Fish is GREAT
- ANd most importantly I started a plan that another member suggested with a little bit of a mix up. I take zyrtec in the morning at about 9 am. AT about 1 pm I take alavert then at 7pm-10 pm I take CLaritin Hives formula ( its hard to find but try Longs Drugs). SOmetimes at night if I feel an onset coming I take benadryl, but not always. DONT talk to the pharmacist about it--they all say the same thing. "there is no point in doing that"--they dont deal with this so they dont know. Tell your doctor and ask if its going to afect any other meds you take-- Im sure it wont. Only sudafed has issues with peoples meds, for the most part. You can read this post for some more guidance.

https://www.healingwell.com/community/default.aspx?f=29&m=1070687

Hopefully that helps. This helps me a lot. I get swelling in my lips eyes and cheeks SO BAD including the feet and hands--and now my BUTT! :) this is the only thing that has worked for me.
Posted 6/13/2008 8:30 PM (GMT 0)
SFnative82


Thanx for your response...........thanx to all that have responded. I am very thankful I got so frustrated that I stumbled upon this forum. As I said before NEVER talked to anyone else who has Lupus............I wouldn't wish it upon my worst enemy but I am thankful you are all out there.

SFnative82, I know what you mean about the butt..........I get them there also all the time. I guess a good way to describe them is like a very red itchy hive............warm to the touch. Some times as small as a marble and other times they can get as big as a golf ball. What I find so frustrating is the hands and the feet.............when they get so swollen and burn, if I gently itch them they feel so good...........as soon as I stop they hurt and burn so bad..............happens often at bedtime and then I get 0 for sleep.

Went for tests and a work up 2 days ago........They figure I am in Kidney failure...also I have a couple dvt's and fluid around the heart. Its all so darned frustrating as I went through a falre up about 2 months ago.....lasted a month and was thinking I was on the mend................but poof.........overnight it all turns upside down. Getting desperate.....seems as the warm weather appears the Lupus gets worse............All I want is just one summer..........Lupus free to spend with my husband and kids. I see a hematologist soon.....hoping he has a few good words for me.
Once again thanx for your reponses, I am thankful, and will continue to read the forum and hopefully have some advice for others myself one day to help them feel a bit better about it as you people have done for me.

sweetcheekione
Posted 6/14/2008 1:20 PM (GMT 0)
Hi sweetcheekione and welcome. I am so glad you found us, especially with everything you have going one. We are a very supportive group and will be here for you when you are going through a rough time and we'll do our best to answer any questions. I'm so sorry that you are so sick and that things don't look good with your kidneys and about the fluid around your heart. I really hope the doctors can help you start to feel a little better. Hang in there and take care of yourself.
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