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Delayed Pressure Urticaria
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LALITT posted:
11 years I've had this "issue",(i'm 35) and it took 11 years for a diagnosis, just so someone can say "we have no idea why this happens, or what it's caused from", and NOTHING works to control it. In this day and age, I'm shocked. First, I can tell you with 99% certainty mine is not caused due to an allergy, so why give me allergy medication? For 11 years I've watched myself, and what I've come up with is a relationship between nerves, muscles, pressure, then BAM wheals galore! When my muscles are working too hard, like doing yard work, or walking too much, I get golf ball sized wheals on the bottom of my feet and I can't bend my ankle because my achellis tendon area is so swollen I feel it will snap if I take one more step. Sometimes it can be the slightest little thing like your jeans rubbing against your calf muscle, or a shirt that doesn't feel tight at all, then you have little wheals all over. I don't really care anymore, when you've had something for so long you get used to it. What I do care about is the effect it could have long term in my life. Could the swelling get so bad that it can choke some of my muscles out? I mean there are times I can't bend my knee, or my ankles? What is it causing them to do? Could this have an effect on other issues I have? For instance when episodes occur, I am so tired, I feel sick, I always feel alittle dizzy, my eyes always hurt and I can't focus. I mean how do I know when these wheals occur they aren't occuring on the inside of my body somewhere as well? Can the nerves in your skin be extra sensitive and set your skin in to itch motion? Is this at the deepest skin level? It's a confusing thing to deal with. Especially when the people around you keep saying "take a benadryl". Well, that'd be great if it actually worked wouldn't it. If anyone knows anywhere/anyone who actually studies this disorder or how we can get "science" to take on this disorder and find a true cause and CURE please let me know. I'd like to think someone is as determined as me at wanting to figure this out.
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DUKE MEDICINE
Gregory M Metz, MD responded:
Sorry to hear about your symptoms. Delayed pressure urticaria is a variant of chronic urticaria and can cause itchy, nodular type swelling that frequently involves hands and feet. The cause is not known, and investigation is currently underway to learn more about it. Antihistamines are a first line treatment to try and prevent the symptoms. When antihistamines are not enough, more aggressive therapies such as cyclosporine or dapsone have been beneficial in some. There is no known cure. I would recommend seeing an allergist for further investigation especially if you have episodes of dizzyness that accomany your swelling to make sure there is nothing else occuring. Have you ever experienced anaphylaxis?
 
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BBGRL33172 responded:
LALITT, I would love to talk with you more I have Chronic Urticaria/Angioedema and my symptoms are spot on for what you are describing. You always know when it's coming if the muscle begins to cramp in you arm you can bet that hive is comin or your upper thigh you get a cramp and bingo your hands start to cramp and guess what. I have been fighting this for 8 yrs diagnosis just 3or 4yrs ago. I can tell you this much it is not so much the nerves but the several layers of skin and organs that are affected but because of inflammation it causes pressure to the nerves. I have had the dizziness, nausea, tiredness especially after a big blow up. there have even been times I am in the bathroom getting sick from them being so deep in my stomach. I have learned that with Urticaria there is Literally no place safe I have had it in my lung on my eye ball in my stomach ear ever my private area. If you would be interested I would like to become support buddies and maybe we can help each other with this. Good luck hang in there and hope to hear from you soon!
 
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NOATIN replied to BBGRL33172's response:
agree. i've had it on and off for 20 years. on right now. i've had it everywhere and i've seen every type of doctor, even the Mayo clinic. certain serious issues mst be ruled out prior to giving up on treatment. also i always keep some prednisone on hand especially if i'm going on vacation. if my feet or knees start to swell i'll take a prednisone (just a low dose) and sometimes that can stop the cascade of the event. you can't take it a lot or in high doses though. my MD 20 years ago did that and it was a nightmare. even though allergy shots are supposed to work for DPU and CIU i'm going to start them again. for years i was taking the shots and didn't have the problem then 2 years after stopping them i got hives and swelling. really bad. head t toe one day--that's when my primary care MD freaked out and said i had to go see Mayo. same conclusion as 20 years ago. i've tried every antihistamine out there. it really is unbelievable that there's no treatment for this. the itching and stinging can be horrible. there have been times i thought i would go crazy. tylenol actually helps the itching/pain/stinging more than antihistamines. gotta run. will follow you and LALITT. and will let you know how the allergy shots go. i have lots of allergies to pollens etc. i'm hoping the shots will up my immune system in general--meanwhile i'll be dealing with 3 shots twice a week and my arms usaly swell from the shots. alot. that should be fun.NOT.
 
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BBGRL33172 replied to NOATIN's response:
I have not had shots for this as of yet. I just started with a new Dr. So will see how that goes.I get hives and swelling for blood draws shots everything heck just driving my car causes my hands to start to puff up and turn red. That really sucks.It is not uncommon for me to have hives on my back from sleeping on my back. I just started a support group on FB called URTICARIA Your Not Alone if anyone is interested! It is only 48hrs old so trying to get the word out if you want to stop by and maybe share with others you know with this condition!
I am curious as to what tomorrow holds I am really tired and itchy right now so maybe a not so good day tomorrow. I gonna go for now I will be by every day to check for new posts or new comers!
 
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LALITT replied to BBGRL33172's response:
My ears swell, and the back of my head if I sleep too heavy. Ridiculous! I have extreme anxiety/panic now because I feel like every little pain means I'm gonna die. I have started to take paxil and oddly enough I have not had a full blow attack for 8 days now. I just get little tiny red itches. So I wonder if the paxil calmed my nerves alittle to make it not so strong. I have no idea. I have never been offered predisone at a low dose or anything, my doctor says there is too much bad that can come from it? Yet, you want me to take paxil? Wierd. I have little faith in doctors. It's hard to get them to truly listen and get them involved with you as a person. I don't think asking my doctor to do his own research on the issue is really that much to ask. You'd think as a doctor they'd be mystified and want to find some answers too. I guess when you have hundreds of patients though that's tough to do. Oh well. BBGRL33172, I tried to pull this Urticaria up on facebook, but not sure if I have the right one can you give me a link or more info. I appreciate it, thank you. Glad to know I'm not alone )
 
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BBGRL33172 replied to LALITT's response:
LALITT here is the link to my group on FB I am the only one there for now it is a process in motion, but if we get together there maybe this other guy will join us and in a short time boom. I am there everyday watching for new comers. I get the back of the head hives to usually causes me headaches. I have been on Paxil for many yrs now unrelated issues. I think my hives have become immune to it. We can talk more when you get caught up in my group page. Plus I will continue here till I hear from you there! Right now baby sleep it is time for me to have a me moment lol! TTYL Prayers for all us hive people out there. May today be the last day I itch, may tomorrow be a day of joy and for once can I not have to stop and scratch or pop a pill or worry about what I do and the suffering to follow later! God Be the strength I need to endure what ever it is that is coming my way so that it does not control my life, but let's me live it to the fullest!
http://www.facebook.com/home.php?sk=group_145883878795314&ap=1
 
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Marysia replied to BBGRL33172's response:
I just start feeling better after 7 month's hell causing urticaria (pressure, food, sun"026), angioedema, stomach ache and other symptoms. I was hospitalised 7 times because of internal edema"026. I was able to be back to a normal life thank to people like you who share their experience on the forums. In my case all this was caused by a bacteria: Helicobacter or H pylori. We can get it during our childhood or even it can be contracted when we travel"026 Some countries have a very high percentage of it. I don't say that it is your case as well but it is worth to check. I had to take antibiotics for more than one month but once my breathing test was negative (no helicobacter anymore) I starting slowly getting better. Now, 2 month later I am the happiest person ever. Please check with your doctor if you are H pylori positive. Take care and let me know if you have other questions.
 
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mbwana75 responded:
I have been fightingthis battle for 17 years with little to no results. I am at the point now thati will not go to a doctor for help because they don't know and I refuse to pay 35 dollars co pay for them to give me Zyrtec. I am not giving up just looking for answers myself. This has to be something internal that is out of balance. I have no allergies or any other conditions to speak of. I have tried diet changes, every anti-histimen mankind make with little effect. Today I ran across this artical and a ray of hope appered. http://www.steadyhealth.com/Delayed_Pressure_Urticaria__CURED_t240337.html
I have scheduled an appointment and will get back to you when I can. If you read the comments one person suggested Gold Bond Uiltimate lotion. I just went to the store about 30 mins ago and tried it. I can say that the burning and itching stop after about five mins and the pain is going away too. I don't feel the constant heat I normaly feel but results and pending. Good luck and keep up the fight.
 
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lovlyleslie replied to mbwana75's response:
Hello, wow I'm so happy to have found people just like me. My name is Leslie and I've suffered since age 7, over 30 yrs now.
At seven I was told I had over sensitive skin and to bathe in oat meal, stay indoors and don't eat sweets (really, I'm 7), I believe that's when my depression started. By my teen yrs it had gotten so bad I was having itch attacks daily, always in the hospital and ready to end it all! All through school I'd be teased, hit to see their hand print raise in my skin, chased home and called all sorts of names like freak. Now my self-esteem is low, I cant spend much time outdoors and no medication has worked, I'm just a walking ball of pain. However I look normal, but don't make me itch I joke sometimes to keep from crying, which I do often. I must say I love my skin, it glows from my diet that had to change and I try and exercise to fight my depression, so I'm hot, but it's a double edged sword. I only do what I do to fight my urticaria but I cry and itch so it's a never ending cycle. I'm tired ya know? One day God of no itching, no painful wheals, No swollen feet or eyes in thirty years is that too much to ask? God bless you all, I know and feel your pain!
 
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NicolaMae replied to Gregory M Metz, MD's response:
I have had anaphylaxis. Nothing like a shot in the bum to shake you out of it. I have had delayed pressure urticaria for four years. My doc hypothesizes that it might be my obesity causing inflammation. Of course, it's a lot of fun trying to get aerobic activity in with this condition. You find out the hard way all the things you can't do unless you want to hurt.
 
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NicolaMae replied to Marysia's response:
Huh? HPylori? I wish that was the case for me. I had an HPylori infection but I took antibiotics for it years ago yet I still have urticaria. I hat thei crap.
 
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NicolaMae replied to mbwana75's response:
Are you obese? I am and my doc thinks it could be my obesity that's causing inflammation. It's just a hypothesis but I'm working towards weight loss to see if this crud goes away. In the meantime, I'm taking doxepin, ranitadine, and zyrtec for the hives. While doxepin is an anti depressant and ranitadine is an antacid, they apparently have great anti-histamine properties. When I take them as directed (meaning I dont' forget) my hives are lessened although I still have issues with pressure. Maybe ask your doc to prescribe doxepin? The rest are over the counter.


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