Hi all,
All of this information is very useful. I was diagnosed with Cold Urticaria in November of 2008 at the age of 24. The onset of the hives for this condition began in the summer of 2008 while I was running on a treadmill. After months of trying to figure out what was causing them I realized one cold fall morning while walking my dog half a block that I got hives all over my arms and legs (areas that were exposed to the elements). I thought that was bad at the time but for the past couple of months I have developed hives while sitting, leaning for too long on a table, wearing tight jeans.... this is far worse!
The hives come and go quickly but I have been managing them every morning by taking 2 benadryl. They appear pretty much anywhere at random. My back is probably the worst. Some are small circles others look like I was whipped. I was perscribed Xyzal for my Cold Urticaria but try not to take it because it is pretty pricey unless I am going to be very active that day. The Xyzal is designed for all forms of chronic urticaria. My hives come after my skin has touched something a bit harshly as well.... so seems like I may have dermagraphism too. I shave alot now because I have seen that when my hair is growing back my skin flairs up worse. On or around my menstrual cycle the flair ups are worse so the hives may be tied to hormone levels.
Alittle about my history:
I had all four wisdom teeth removed when i was 18 and was put under.
Suffered a crazy, rare incident of Rhabdomyolisis when I was 22.
My mother and father (especially my mother) suffer from hives as well but uncertain as to their triggers.
I was jaundice when I was born.
Had scabies after working in an innercity when i was 21.
I have never had any allergies before this but was very sensitive to mosquito bites and nickel.
Gained a substantial amount of weight (15 lbs) since the onset of any hives (am uncertain if this could be a cause or an effect).
What I have realized is that working out helps alot, staying cool, drinking lots of water. Interestingly, I was on vacation this past weekend and drank quite a bit of hard licquor and didn't get a single hive that night. Was pleasantly surprised but obviously don't want to use this as a solution. I am planning to go to my dermatologist (he's very good and was the one that diagnosed me with the cold urticaria) for an official diagnosis and see if he has any ideas or thoughts about this. Maybe after running a lot of tests they can find something that is the cause and I can have a cure. I am doubtful of this as most are idopathic but I'm holding out a little hope.
I have read several other boards about DPU and some have suggested that it can be caused by Candida or a parasite called Bastocyst Humois (spelling is wrong) living in your GI tract.
This is something that I have been self-conscious about but am hoping they will go away. It is depressing me that the possibility of finding a cure is slim and that all I will have to settle on being able 'manage' them.
I hope this helps someone out there. I wish that Pharma companies and Drs. did more research to find a cure for this.
All of this information is very useful. I was diagnosed with Cold Urticaria in November of 2008 at the age of 24. The onset of the hives for this condition began in the summer of 2008 while I was running on a treadmill. After months of trying to figure out what was causing them I realized one cold fall morning while walking my dog half a block that I got hives all over my arms and legs (areas that were exposed to the elements). I thought that was bad at the time but for the past couple of months I have developed hives while sitting, leaning for too long on a table, wearing tight jeans.... this is far worse!
The hives come and go quickly but I have been managing them every morning by taking 2 benadryl. They appear pretty much anywhere at random. My back is probably the worst. Some are small circles others look like I was whipped. I was perscribed Xyzal for my Cold Urticaria but try not to take it because it is pretty pricey unless I am going to be very active that day. The Xyzal is designed for all forms of chronic urticaria. My hives come after my skin has touched something a bit harshly as well.... so seems like I may have dermagraphism too. I shave alot now because I have seen that when my hair is growing back my skin flairs up worse. On or around my menstrual cycle the flair ups are worse so the hives may be tied to hormone levels.
Alittle about my history:
I had all four wisdom teeth removed when i was 18 and was put under.
Suffered a crazy, rare incident of Rhabdomyolisis when I was 22.
My mother and father (especially my mother) suffer from hives as well but uncertain as to their triggers.
I was jaundice when I was born.
Had scabies after working in an innercity when i was 21.
I have never had any allergies before this but was very sensitive to mosquito bites and nickel.
Gained a substantial amount of weight (15 lbs) since the onset of any hives (am uncertain if this could be a cause or an effect).
What I have realized is that working out helps alot, staying cool, drinking lots of water. Interestingly, I was on vacation this past weekend and drank quite a bit of hard licquor and didn't get a single hive that night. Was pleasantly surprised but obviously don't want to use this as a solution. I am planning to go to my dermatologist (he's very good and was the one that diagnosed me with the cold urticaria) for an official diagnosis and see if he has any ideas or thoughts about this. Maybe after running a lot of tests they can find something that is the cause and I can have a cure. I am doubtful of this as most are idopathic but I'm holding out a little hope.
I have read several other boards about DPU and some have suggested that it can be caused by Candida or a parasite called Bastocyst Humois (spelling is wrong) living in your GI tract.
This is something that I have been self-conscious about but am hoping they will go away. It is depressing me that the possibility of finding a cure is slim and that all I will have to settle on being able 'manage' them.
I hope this helps someone out there. I wish that Pharma companies and Drs. did more research to find a cure for this.
I also suffered with DPU for 9 years. I started on xolair and they are gone and I now take nothing try it!
Hello all,
This is my second post. I originally posted in Dec 2008 and wanted to share a few more thoughts on my condition.
I believe it is cyclical (i.e. the advent of the wheals). Without changing my lifestyle (including diet), I can go weeks without a single wheal. Then after 3-4 weeks of nothing I will start to develop urticaria from pressure. I think this is an important finding because it may mean that there is not a true single driver of the wheals (e.g. food diet, alcohol, physical activities, etc.).
Another theory (this one I was able to prove) was that it is both time duration and amount of pressure that can cause the flare-ups. For example, I can apply significant pressure for less than 5 seconds and develop a wheal. Alternatively, I can apply very little pressure (but consistently in one spot) and also develop a wheal. This has led me to be more cautious of both amount of pressure and time spent in one physical position. This theory aligns to the cyclical nature of the disease in that I may not develop any wheals, neither by lots nor little pressure. But, if the cycle is renewing itself I will.
Another note: hydrocortisone cream (1%) that can be bought OTC is a wonderful drug for urticaria. If I feel the tingling I will immediately apply it. It practically eliminates itching and significantly curtails the spreading of the wheal. I strongly encourage all to carry a small tube with them. You do not need a lot of it; just cover the affected area and let it work its magic. I use it everywhere, but the inside of my mouth. It does not have the side effects of prednisone so not to worry about that.
I have not read others speak about acid reflux, but I have suffered greatly from this. The GI I went to agrees that it is driven by the DPU. This is because the stomach will secrete acid in response to the release of histamine. So, if my body is releasing histamine because of pressure, my stomach will start to create additional acid (I think regardless of food in the stomach). This is most unpleasant and has forced me to significantly limit what I eat. I was prescribed a PPI that has helped, but has not eliminated the effects of the acid reflux. The acid reflux will flare at the same time as my DPU flares (see earlier thoughts on DPU cycle)
Another theory I have not been able to prove (because I have yet to move cities or change jobs) is the influence of stress. I find it interesting that the median age is 31 for this disease (possibly a particularly stressful period in one's life). For one year when I was 14 I suffered from debilitating migraines. They disappeared after the one year to never return. Looking back I strongly believe stress contributed to that condition. Right now I have an exceptionally stressful life that I would place a bet is contributing to this.
Current meds: 2x day/ 10 mg cetirizne, 20 mg famotidine. 1x day/ 20 mg aciphex. I always carry an epipen. Prednisone is a last resort which I have only used three times. Twice because I had exceptionally important meetings to attend. Once to test if it would limit the onslaught of an acid attack (which it did!)
This is my second post. I originally posted in Dec 2008 and wanted to share a few more thoughts on my condition.
I believe it is cyclical (i.e. the advent of the wheals). Without changing my lifestyle (including diet), I can go weeks without a single wheal. Then after 3-4 weeks of nothing I will start to develop urticaria from pressure. I think this is an important finding because it may mean that there is not a true single driver of the wheals (e.g. food diet, alcohol, physical activities, etc.).
Another theory (this one I was able to prove) was that it is both time duration and amount of pressure that can cause the flare-ups. For example, I can apply significant pressure for less than 5 seconds and develop a wheal. Alternatively, I can apply very little pressure (but consistently in one spot) and also develop a wheal. This has led me to be more cautious of both amount of pressure and time spent in one physical position. This theory aligns to the cyclical nature of the disease in that I may not develop any wheals, neither by lots nor little pressure. But, if the cycle is renewing itself I will.
Another note: hydrocortisone cream (1%) that can be bought OTC is a wonderful drug for urticaria. If I feel the tingling I will immediately apply it. It practically eliminates itching and significantly curtails the spreading of the wheal. I strongly encourage all to carry a small tube with them. You do not need a lot of it; just cover the affected area and let it work its magic. I use it everywhere, but the inside of my mouth. It does not have the side effects of prednisone so not to worry about that.
I have not read others speak about acid reflux, but I have suffered greatly from this. The GI I went to agrees that it is driven by the DPU. This is because the stomach will secrete acid in response to the release of histamine. So, if my body is releasing histamine because of pressure, my stomach will start to create additional acid (I think regardless of food in the stomach). This is most unpleasant and has forced me to significantly limit what I eat. I was prescribed a PPI that has helped, but has not eliminated the effects of the acid reflux. The acid reflux will flare at the same time as my DPU flares (see earlier thoughts on DPU cycle)
Another theory I have not been able to prove (because I have yet to move cities or change jobs) is the influence of stress. I find it interesting that the median age is 31 for this disease (possibly a particularly stressful period in one's life). For one year when I was 14 I suffered from debilitating migraines. They disappeared after the one year to never return. Looking back I strongly believe stress contributed to that condition. Right now I have an exceptionally stressful life that I would place a bet is contributing to this.
Current meds: 2x day/ 10 mg cetirizne, 20 mg famotidine. 1x day/ 20 mg aciphex. I always carry an epipen. Prednisone is a last resort which I have only used three times. Twice because I had exceptionally important meetings to attend. Once to test if it would limit the onslaught of an acid attack (which it did!)
I have been dealing with DPU for about 3 years now. I can relate the onset of DPU to a race I did that I over hydrated for and flushed electrolytes. Since that time I have had the hives post pressure. I was told to take Zurtec and that helped some. I talked to a pharmacist friend of mine and they suggested a product called NasalCrom. NasalCrom is a cromalyn sodium solution that is sprayed in the nose for allergy relief. The solution is a special electrolyte that is used by the mast cells in the immune system. Mast cells make histamines and the NasalCrom stabilizes mast cells. Taking this has changed my life. I am virtually symptom free with the Zurtec and NasalCrom combo. I have been backpacking, mountain biking, and ride off-road motorcycles regularly. I hope other can have similar results.
NasalCrom is over the counter and I use it a couple of times a day.
NasalCrom is over the counter and I use it a couple of times a day.
Nonamemale, I found that your post was really instructive and I appreciate reading it. Can you tell me what inspired you to write it? Thanks for posting that.
First of all, than you all for posting. This thread is not only medically beneficial, but it is also very comforting to hear about others suffering from DPU. Here's a quick Bio in case it helps at all.
-Age that DPU started: 15
-Current Age: 23
-Height/Weight that DPU started: 6'1" (145-152lbs)
-Current Height/Weight: 6'4" (175lbs)
-No birth complications
-No significant viruses/diseases
-No Surgeries
-No Allergies
At the time the DPU started i was very physically fit (was a wrestler) and didn't have any abnormal stresses in my life. It started off fairly mild, they would usually form in the same places that I would get mat burns (Elbows, Knees, Wrist, knuckles etc.) and would most often only grow to be around a 3 inch diameter. My biggest fear at the time is that they looked a lot like ring worm and that judges would not let me wrestle (thinking that it would spread to others).
For the first 3-4 years that i had DPU I would only get 1/month or so. Which was not a lot compared to the amount of physical activities i participated in. Over the years it progressively became worse and peaked when i was 20-21. At that time i was so fed up with medications (the drowsiness can really do a number on your Psyche after a while), and the activities that triggered flare-ups that i became isolated, depressed, unfit, and stopped taking medication. I would most often get Hives on the back of my thighs from sitting in chairs, hands from miscellaneous bumping or overuse, feet if stood too long or waked too much, inside of my knees from sleeping on my side, and sometimes on my eyes/lips if i slept with my hand underneath my face.
Eventually i started back up on meds (Zyrtec & Claritin) and started working out again. The DPU was manageable but still a quality of life issue. Since Zyrtec is now an over the counter drug (i.e. not covered by insurance anymore) I've switched to the Costco brand of Zyrtec called Aller-Tec. If you are currently using Zyrtec I HIGHLY recommend switching. I feel less drowsy, have seen a decrease in flare-ups, and they cost way less. Currently a bottle of 365 10mg tablet bottle cost $17!
Currently I am taking (2)10mg of Aller-Tec a day on most days. 1 in the morning and one at night. 3 a day if i know i'm going to be more active than usual. 4 if i i'm gong to be VERY active that day.
Here's some things I do that help me:
- Use Gloves. I found a great pair of gloves that are tough, padded on the inside, and have a hard rubber on the outside. Anytime I'm going to subject my hands to some sort of short high amount of pressure (Moving boxes, lifting weights, using tools, etc.) I put them on and it really lowers the chances of a Flare-up.
- Drink lots of water. I saw someone else mention this. I've been trying it and it seems to help.
- Use Antihistamines preemptively. Take your medication on a regular basis, whether you have a flare up or not. And plan ahead of time. Be pro-active, not reactive.
- Know your limit. This is probably the hardest part about DPU in my life. As a 23 Male it's not easy to say, "no i cant help you move that desk" or "I need to sit down for a bit, Ive been standing too long." And then to have to explain why... and know that they don't understand. But after a while you "know" when you're getting to that point, or getting that tingle. Don't ignore it.
I'll stop the wall of text now, but if anyone wants to contact me, whether it's for information or just to vent to someone that understands the frustration that comes along with DPU, feel free to
-Age that DPU started: 15
-Current Age: 23
-Height/Weight that DPU started: 6'1" (145-152lbs)
-Current Height/Weight: 6'4" (175lbs)
-No birth complications
-No significant viruses/diseases
-No Surgeries
-No Allergies
At the time the DPU started i was very physically fit (was a wrestler) and didn't have any abnormal stresses in my life. It started off fairly mild, they would usually form in the same places that I would get mat burns (Elbows, Knees, Wrist, knuckles etc.) and would most often only grow to be around a 3 inch diameter. My biggest fear at the time is that they looked a lot like ring worm and that judges would not let me wrestle (thinking that it would spread to others).
For the first 3-4 years that i had DPU I would only get 1/month or so. Which was not a lot compared to the amount of physical activities i participated in. Over the years it progressively became worse and peaked when i was 20-21. At that time i was so fed up with medications (the drowsiness can really do a number on your Psyche after a while), and the activities that triggered flare-ups that i became isolated, depressed, unfit, and stopped taking medication. I would most often get Hives on the back of my thighs from sitting in chairs, hands from miscellaneous bumping or overuse, feet if stood too long or waked too much, inside of my knees from sleeping on my side, and sometimes on my eyes/lips if i slept with my hand underneath my face.
Eventually i started back up on meds (Zyrtec & Claritin) and started working out again. The DPU was manageable but still a quality of life issue. Since Zyrtec is now an over the counter drug (i.e. not covered by insurance anymore) I've switched to the Costco brand of Zyrtec called Aller-Tec. If you are currently using Zyrtec I HIGHLY recommend switching. I feel less drowsy, have seen a decrease in flare-ups, and they cost way less. Currently a bottle of 365 10mg tablet bottle cost $17!
Currently I am taking (2)10mg of Aller-Tec a day on most days. 1 in the morning and one at night. 3 a day if i know i'm going to be more active than usual. 4 if i i'm gong to be VERY active that day.
Here's some things I do that help me:
- Use Gloves. I found a great pair of gloves that are tough, padded on the inside, and have a hard rubber on the outside. Anytime I'm going to subject my hands to some sort of short high amount of pressure (Moving boxes, lifting weights, using tools, etc.) I put them on and it really lowers the chances of a Flare-up.
- Drink lots of water. I saw someone else mention this. I've been trying it and it seems to help.
- Use Antihistamines preemptively. Take your medication on a regular basis, whether you have a flare up or not. And plan ahead of time. Be pro-active, not reactive.
- Know your limit. This is probably the hardest part about DPU in my life. As a 23 Male it's not easy to say, "no i cant help you move that desk" or "I need to sit down for a bit, Ive been standing too long." And then to have to explain why... and know that they don't understand. But after a while you "know" when you're getting to that point, or getting that tingle. Don't ignore it.
I'll stop the wall of text now, but if anyone wants to contact me, whether it's for information or just to vent to someone that understands the frustration that comes along with DPU, feel free to
I have been suffering with this for almost 11 years now. I was a very successful masseuse and now not only can I not give a good massage I can't get one either! I spent the first several years just being blown off by one doctor or another. I actually diagnosed it myself after 4 years and after reading about it on the net and then downloaded the info and took it to a doctor who finally said this is what I had. Amazing. I can't tell you the time and money I spent just trying to find out what the heck was wrong with me. It has totally changed my life. I went from healthy, vibrant, outgoing and very fit to an overwieght slug who hardly leaves the house. I can't do anything physical because I know I am going to pay for it in a few hours. I have taken every antihistamine on the market to no avail and at great expense. I refuse to take steroids regularly but will when I have a really bad attack. Mine is so severe if I wear a turtleneck or scream out at a passing parade or even cry too hard, my throat will swell shut so I keep an Epi Pen at all times. Try grieving over a loved one when you know it could kill you. You can't get over it cause you can't get it out. Benedryl helps some. I am on Plaquenel but haven't noticed any difference. I wear sack clothes that don't bind me, quit carrying a purse and I wear shoes too big that don't bind me. Jeans and tennis shoes are taboo. I sleep on a 4 inch Temporpeadic mattress topper and that helps me not to swell. The biggest problem I have is convincing people how bad this sucks. For the most part I look normal, just fat now and people don't understand that the problem is as serious as it is. I decline a lot of invites because I know I can't get all dressed up for hours at a time without swelling and being in pain. Like, I went to a Broadway show and would loved to have gone to dinner or dancing afterwards but my butt and legs swelled so bad from the seat that it was all I could do to make it out of the building to the car and home. On my wedding day, I swelled in my dress and my husband literally had to peel the dress off of me and then he knew I was in so much pain we just went to bed and he held me while I cried. I try to be thankful it's not cancer or something like that but it still sucks and there is no treatment or cure. You just have to live with it as best you can. You figure it out as you go along what you can and can't do. Getting a job that will let you take off on bad days is slim to none. Social Security or Disabilty through your work will totally blow you off because they just think you have hives and it's no big deal. Be prepared for a huge and drawn out battle. Good luck and God bless you. Trust me, I feel your pain!
First I would like to say I feel bad for all of you. I am going through my personal hell with DPU now, and for the last 5 years. I am not going to tell you how it effects my life because you all know, However I do want to support you guys as I need your support by keeping each informed on new treatments and information that comes out. This will sound crazy but sometimes when I just stop taking all the medicines and endure a couple of weeks of hell and humilation my hives( in the past, not always) have gone away or I should say became tolerable for long periods of time, 2 months or more. I have taken all the H1 and H2 antihistamines. I have even taken cyclosporine which I got off of. Too many dangerous side effects. RIght now I am trying to save money to do some kilation treatments with a doctor. He has a great track record with thinking outside the box with great results. He is a national researcher and internal medcine Doctor. I will let you know if it works, if I can save the money. He uses this to treat ALS in patient who have begging stages of the disease. That is disease makes urticaria seem like a cold. DO NOT LET THIS DESTROY YOUR LIFE!!!! You must get over the embarrassment and do the things you want. I know it is hard and not always possible but don't let this destroy your attitudes. It is the only thing that we have to keep us sane!! Prayer, believe.
I have not been diagnosed with DPU as yet-- I have been afraid to get the process of diagnosis started because I knew if I went to my regular GP for this, I would be led down the primrose path, because it seems like an unusual condition. I did an internet search of my symptoms, and it sounds exactly right, although I do not have the face swelling or pain with my welts. I have had pain in my heels and the balls of my feet, and it may be related to this, but I am hoping to hear from some of you to figure out what type of doctor to go see to get this diagnosed properly and find some relief. A friend had suggested I look up "functional medicine" in Google and find someone in my are who takes this approach, since it sounds like an auto-immune disorder, and I don't want to spend thousands of dollars chasing possibilities.
Here's what I can tell you: I am female, 48, and experiencing the onset of menopausal symptoms.
I am VERY sensitive to heat. I live in Florida, and it only makes it more difficult. Since I am going through perimenopause, I get hot flashes and night sweats like crazy now, but ever since I was a kid, I felt like my thermostat was messed up. For my whole life, whenever I exercise, I get bright red in the face and my head and face perspire profusely. My hair is drenched. This has been happening since I was 12 or so. I used to be thin my whole life, but am currently about 40-50 pounds overweight, which can't help but add to the problem I'm sure. A few years ago, I suffered from bright red face and hot ears when it would be cold outside, so hot and cold temperatures do weird things to me.
The worst problem I am currently having is the pressure welts/hives/wheals which itch and last for days and sometimes even weeks.
Here is what I woke up to this morning. I have not scratched these, but they are driving me crazy!!
I have scars on the tops of my feet because I am affected by shoes that press down on the top of my feet. Anything that touches there for any length of time (shoes, socks, straps of shoes) and is then moved or removed gives me red, itchy raised welts on the top of my feet. I try not to scratch them and put hydrocortisone cream on them instead, but sometimes I can't help it. The scars are from scratching the wheals, which I know I shouldn't do!
I can't wear any clothes with a waistband without causing me to have a huge itchy welt that goes around where the waistband touches. The itching is somewhat noticeable when I have the clothes on, but increases tenfold when the pants come off and the waistband is removed. That is when the welts rise up and just about drive me crazy.
Other areas where I an sensitive to the rashes, hives and welts are on my forearms (underside), where my bra straps or bra band touch, where my underwear binds, and in the area just under my armpits.
The condition seems to get worse at night. Sometimes I will try not wearing any pajamas or nightgown, but the sheets will cause the welts if I sleep in a way where they have wrapped around and somehow bound me under the arms. I don't know what to do about this because movement is unconscious when we sleep. I wash my laundry in dye-free, perfume-free detergent, but it doesn't seem to help.
If I take a long auto trip-- say 8-10 hours of sitting while driving-- I will get these symptoms on my butt and thighs from where I have been sitting- crazy!!
The symptoms are ugly and embarrassing, so I cover up more, and it makes me hot- no win, except that I am motivated to exercise and lose weight which will hopefully help.
When I bathe my dogs, the friction of washing their fur causes my palms to get hot, red and itch. I now use something I can hold so that my hands are not in direct contact with them.
As with most of you here, Benadryl and other OTC antihistimines have not been too effective.
Here's some other things I can tell you about me:
I have suffered from allergies my whole life, but they have gotten better as I have aged (hayfever symptoms, sneezing and itchy eyes)
Thanks so much for all of the great posts here. Does it sound to you like I have DPU? What I have read here seems to be the closest thing I have found to match my symptoms.
I feel a bit more armed now to go see a doctor about this, but I am not sure if it should be a dermatologist, allergist or naturopath. The posts here have given me a ot of support and ideas, but I could use some advice about what to do next.
Here's what I can tell you: I am female, 48, and experiencing the onset of menopausal symptoms.
I am VERY sensitive to heat. I live in Florida, and it only makes it more difficult. Since I am going through perimenopause, I get hot flashes and night sweats like crazy now, but ever since I was a kid, I felt like my thermostat was messed up. For my whole life, whenever I exercise, I get bright red in the face and my head and face perspire profusely. My hair is drenched. This has been happening since I was 12 or so. I used to be thin my whole life, but am currently about 40-50 pounds overweight, which can't help but add to the problem I'm sure. A few years ago, I suffered from bright red face and hot ears when it would be cold outside, so hot and cold temperatures do weird things to me.
The worst problem I am currently having is the pressure welts/hives/wheals which itch and last for days and sometimes even weeks.
Here is what I woke up to this morning. I have not scratched these, but they are driving me crazy!!
I have scars on the tops of my feet because I am affected by shoes that press down on the top of my feet. Anything that touches there for any length of time (shoes, socks, straps of shoes) and is then moved or removed gives me red, itchy raised welts on the top of my feet. I try not to scratch them and put hydrocortisone cream on them instead, but sometimes I can't help it. The scars are from scratching the wheals, which I know I shouldn't do!
I can't wear any clothes with a waistband without causing me to have a huge itchy welt that goes around where the waistband touches. The itching is somewhat noticeable when I have the clothes on, but increases tenfold when the pants come off and the waistband is removed. That is when the welts rise up and just about drive me crazy.
Other areas where I an sensitive to the rashes, hives and welts are on my forearms (underside), where my bra straps or bra band touch, where my underwear binds, and in the area just under my armpits.
The condition seems to get worse at night. Sometimes I will try not wearing any pajamas or nightgown, but the sheets will cause the welts if I sleep in a way where they have wrapped around and somehow bound me under the arms. I don't know what to do about this because movement is unconscious when we sleep. I wash my laundry in dye-free, perfume-free detergent, but it doesn't seem to help.
If I take a long auto trip-- say 8-10 hours of sitting while driving-- I will get these symptoms on my butt and thighs from where I have been sitting- crazy!!
The symptoms are ugly and embarrassing, so I cover up more, and it makes me hot- no win, except that I am motivated to exercise and lose weight which will hopefully help.
When I bathe my dogs, the friction of washing their fur causes my palms to get hot, red and itch. I now use something I can hold so that my hands are not in direct contact with them.
As with most of you here, Benadryl and other OTC antihistimines have not been too effective.
Here's some other things I can tell you about me:
I have suffered from allergies my whole life, but they have gotten better as I have aged (hayfever symptoms, sneezing and itchy eyes)
- I am very allergic to cats and a little to dogs as well but not bad (I have three dogs)
I suffer from migraines, which correlate to hormone changes, so I usually have them when I have a menstrual cycle (just to make it a little more enjoyable....) I mention this, because I somehow think that the heat sensitivity, migraines and rashes are related somehow.
I suffer from dysthymia (low level, chronic depression) and take low doses of Wellbutrin and Lexapro. I do great on these meds
I have had two laperoscopies for endometriosis, have had a history of infertility, had two miscarriages and one healthy pregnancy, but it was high-risk, and I had to be on anti-contraction drugs, progesterone and bedrest until I delivered by C-section. I had my daughter at age 37 after nine years of infertility treatments and the pregnancy losses.
I am overweight at present, but am motivated to get the weight off.
Thanks so much for all of the great posts here. Does it sound to you like I have DPU? What I have read here seems to be the closest thing I have found to match my symptoms.
I feel a bit more armed now to go see a doctor about this, but I am not sure if it should be a dermatologist, allergist or naturopath. The posts here have given me a ot of support and ideas, but I could use some advice about what to do next.
Sounds and looks like it to me! I gave up wearing panties and any other type of clothing that binds, years ago. I began sleeping in the nude, too. I live in long t-shirts and nothing else until I have to go out and then it's baggy clothes. I actually buy a lot of maternity clothes so I can swell in them as the day wears on if I have to be out in public for long. Three-quarter in. sleeves are a nono, too, as I will swell where they rub the arm. Try shoes without high heels as that puts pressure on the heel and the ball of the foot and forget tennis shoes, they bind the whole foot. Mootsies Tootsies has very soft, flexible shoes that are fashionable, which was hard for me to find before I found this brand. All the other comfortable shoes were for old ladies and I hated the styles. Don't even fool around with a GP or Allergist. They don't know what to do. I wasted a lot of time and money taking that route. Go straight to a rheumatologist. It took me 3 times to find one that I liked that actually looked at me and would know me if they hit me with their golf cart. Mine is actually into the research of this disease, whatever it is. (I live in the Houston area.) It isn't Lupus or any of the other boxes of auto-immune diseases they try to fit it in so it's hard to treat. Get an Epi-Pen, read the directions, watch the video and keep it on hand. When the Dr. prescribed one for me I blew off getting it filled because I had never had an attack of the throat, just my hands, feet and stomach swelling. Within a month, I had my first episode and had to rush to fill the prescription and barely made it. My throat was almost totally closed and I was in such a panic I didn't know how to use it and seconds count! Stress make it worse! It's hard to live a stress-free life, I know, but it really aggrevates the symptoms so don't be offended (like I was) if the first prescription is for an anti-anxiety med. I felt resentful and thought the Dr. was trying to placate me by constantly trying to put me on Xanax or Valium. I figured I had given up so much of my life physically that all I had left was my mind and I didn't want to live it on drugs. The Dr. can find one that works for you in a small enough dose that you can still function. It sucks, but the fact is you will, for the most part just have to adjust your life and everything in it to accomodate this disease. You learn as you go what you can and can't do and what is worth the pain. I love gardening but can't pull the weeds without my hands swelling so I don't. I learned to use a lot of mulch. I grocery shop late in the day so my husband is home to carry the grocery bags for me because the straps tear my hands up and then I can't cook dinner. You'll figure it all out, too. Steroids will help in the really bad flares but you don't want to be on them constantly as they have their own problems. I take a very small dose when the welts are bad, then an antihistamine and a pain pill and then I am pretty much done until they go away. I just do everything I can to prevent them in the first place. I gave up my job as a vendor with a pretty big route I had to drive daily because of how bad the backs of my legs and my butt would swell and as it progressed it even got to where the steering wheel made my hands swell. I never had success with the lotions, even the prescription ones. Good luck to you!
BeaBea,
It is great to hear from you and get some advice.
This has been driving me crazy for about six months or so, and I am ready to act.
Finding this board both comforts me that I can get info on this problem, but it worries me too- that my condition could worsen. Based on what you have written and what I have found since I have scoured the posts here, it sounds like my symptoms are relatively light compared to others.
I am lucky that I do not get the welts or swelling on my face, and that at present I am only experiencing the itchiness of these- no pain. I can't imagine how it would be to deal with problems holding tools, as I am an artist and work with my hands constantly.
I suppose I would be foolish not to find a way to check it before it gets worse. I want to stay off prednisone and other steroids if I can help it at all.
Thanks for the advice, I will continue to read and soak in the information here.
My mom had Lupus but was in remission for a really long tine. Here flareups affected her joints and organs- no external symptoms. I have been tested several times, but it has always been negative, thank goodness.
It is great to hear from you and get some advice.
This has been driving me crazy for about six months or so, and I am ready to act.
Finding this board both comforts me that I can get info on this problem, but it worries me too- that my condition could worsen. Based on what you have written and what I have found since I have scoured the posts here, it sounds like my symptoms are relatively light compared to others.
I am lucky that I do not get the welts or swelling on my face, and that at present I am only experiencing the itchiness of these- no pain. I can't imagine how it would be to deal with problems holding tools, as I am an artist and work with my hands constantly.
I suppose I would be foolish not to find a way to check it before it gets worse. I want to stay off prednisone and other steroids if I can help it at all.
Thanks for the advice, I will continue to read and soak in the information here.
My mom had Lupus but was in remission for a really long tine. Here flareups affected her joints and organs- no external symptoms. I have been tested several times, but it has always been negative, thank goodness.
So you are just getting started then. Get ready, unfortunately, it progresses. I was perfectly healthy and very fit, a size 1 and 116 lbs and addicted to free weight training and had a great job as the most expensive masseuse in Houston...and then one day I was making a box valance for a formal dining room and I used a hammer and a staple gun. The next morning I went to the ER because the pain and swelling were so bad. They didn't have a clue. Nothing else happened for awhile. Then I began noticing some light pain and swelling after a really deep massage session, but nothing unbearable. Then my tennis shoes began to make my feet hurt. I wore scrubs and tennis shoes for my sessions. I just kept changing them out. It took a couple of years for it to get debilitating where I gave up massage career completely. Then one Christmas 3 years in, I got a great spa package as a gift from hubby. I needed it! I began with a massage and then a facial and then a pedicure. Into the manicure a couple hours later I began to feel bad. By the time I sat in the stylist's chair to get my hair and make-up done I was on fire! I ran out the door and straight to the ER. Again, they were clueless but it taught me I couldn't have pressure anywhere on me much less my whole body. It went downhill from there over time. It doesn't just happen out of the blue. It progressively gets worse over time. I'm now a fat 190 lb, size 16 miserable blob with no life. Anything I do causes me to swell and have intense pain. I can't even cry hard without my throat swelling shut. Get the Epi-Pen. Get yourself to a good rheumatologist NOW.
Gosh Barbara,
I am so sorry to hear what you have gone through and that you haven't been able to get much relief. It makes me worry about what might be in store for me.
How is DPU diagnosed exactly?
What are the markers for it?
One of my friends who is a nurse and has been a holistic practitioner mentioned that I should get my adrenals checked with a saliva test.
I feel like I have multiple issues going on- perimenopausal symptoms, hormonal migraines I'd love to get under control and now- THIS. It feels like I want to find someone who is willing to look at the whole picture, as I feel some of this may be inter-related/
If I could find a rheumatologist that practices functional medicine, that would ideal. I feel like I am so out of whack- physically, nutritionally and hormonally.
Reading through the posts here, it seems like cleansing might be a good thing to do on my own and also getting on a regimen of zyrtec 2X a day to see if that helps with the itching. I also plan to get some auto-immune testing done.
Meanwhile,
I am going to go out and get some clothes that don't bind me as much. I need to get some undergarments tat are super stretchy so I don't get the pressure welts. I'd love to find some pants that still look fashionable without the harsh waistband. I generally wear my tops on the outside, so I could think about maternity pants during flareups, but it all seems so embarrassing.
Clearly, if I get out and exercise and lose some weight, part of the tightness of clothing will go away, but I like to wear pants and jeans, and I have loose ones that end up needing a belt, and then the belt causes the pressure welts, so stretchy waists might be best while this is going on.
It does seen yo flare up and then settle down. Sometimes I can go several weeks without an issue.
I am very fortunate that I have not had the pain you are describing, but if there is a way I can build up my immune system to prevent further decline, I am hopeful I can find out about it.
Barbara, what type of therapy are you on for your DPU? I feel sad after reading your post. What you are describing feels a bit hopeless, and I am so hoping that better things are on the horizon for you. I also hope that I can get this figured out and start learning how I can deal with it, and hopefully turn it around or keep it from progressing.
I have had symptoms now for about six months, I'd say. For the longest time, I thought I was allergic to either detergents or fabric composition, but over time, I found it was the actual prolonged pressure that instigated the problem. When the pressure releases (ie waistbands, straps or shoes that press on the tops of my feet are taken off), the itchy red welts show up.
I do feel like a freak sometimes.
And I always felt self-conscious of the apparant broken heat regulator that I seem to have been given. I remember being the only kid in school whose face would turn bright red when she exercised. I was on the track team and dealt with the red face and head sweating- it never got better even when I was in tip-top shape.
Doctors are always baffled when I describe it. No one has ever helped. I weighed 114 pounsds and was in the best shape ever as a teenager and it still happened, but the welts are fairly new, starting this year.
Lori
I am so sorry to hear what you have gone through and that you haven't been able to get much relief. It makes me worry about what might be in store for me.
How is DPU diagnosed exactly?
What are the markers for it?
One of my friends who is a nurse and has been a holistic practitioner mentioned that I should get my adrenals checked with a saliva test.
I feel like I have multiple issues going on- perimenopausal symptoms, hormonal migraines I'd love to get under control and now- THIS. It feels like I want to find someone who is willing to look at the whole picture, as I feel some of this may be inter-related/
If I could find a rheumatologist that practices functional medicine, that would ideal. I feel like I am so out of whack- physically, nutritionally and hormonally.
Reading through the posts here, it seems like cleansing might be a good thing to do on my own and also getting on a regimen of zyrtec 2X a day to see if that helps with the itching. I also plan to get some auto-immune testing done.
Meanwhile,
I am going to go out and get some clothes that don't bind me as much. I need to get some undergarments tat are super stretchy so I don't get the pressure welts. I'd love to find some pants that still look fashionable without the harsh waistband. I generally wear my tops on the outside, so I could think about maternity pants during flareups, but it all seems so embarrassing.
Clearly, if I get out and exercise and lose some weight, part of the tightness of clothing will go away, but I like to wear pants and jeans, and I have loose ones that end up needing a belt, and then the belt causes the pressure welts, so stretchy waists might be best while this is going on.
It does seen yo flare up and then settle down. Sometimes I can go several weeks without an issue.
I am very fortunate that I have not had the pain you are describing, but if there is a way I can build up my immune system to prevent further decline, I am hopeful I can find out about it.
Barbara, what type of therapy are you on for your DPU? I feel sad after reading your post. What you are describing feels a bit hopeless, and I am so hoping that better things are on the horizon for you. I also hope that I can get this figured out and start learning how I can deal with it, and hopefully turn it around or keep it from progressing.
I have had symptoms now for about six months, I'd say. For the longest time, I thought I was allergic to either detergents or fabric composition, but over time, I found it was the actual prolonged pressure that instigated the problem. When the pressure releases (ie waistbands, straps or shoes that press on the tops of my feet are taken off), the itchy red welts show up.
I do feel like a freak sometimes.
And I always felt self-conscious of the apparant broken heat regulator that I seem to have been given. I remember being the only kid in school whose face would turn bright red when she exercised. I was on the track team and dealt with the red face and head sweating- it never got better even when I was in tip-top shape.
Doctors are always baffled when I describe it. No one has ever helped. I weighed 114 pounsds and was in the best shape ever as a teenager and it still happened, but the welts are fairly new, starting this year.
Lori
Girl, I could have written your post once! When it began and I got the runaround from so many different doctors, I felt like a freak, too, because no one could figure it out and explaining it to co-workers and friends was a nightmare. Every Dr. either blew me off or was clueless. I took test after test and gave tons of blood in my search for an answer. I thought it might be fabric softeners and dyes and changed all that. I went the holistic route in frustration and did the saliva and urine test and got these cool little charts and stuff and spent about $440. on the different things I was missing or was out of whack on. It did nothing but make me poorer and one of the minerals actually made my welts worse. At one time, early on, I was on Allegra, Zyrtec, Clarinex and Flonase all at the same time! Very expensive regimen because I didn't have insurance then. The Dr. was just trying everything that fought histamine. I've been on Xyzal and Atarax too. Everything that has come down the pike, looking for relief. After reading my last post, I decided I did sound hopeless and probably worried you so let me say that I have been told that my case is in the extreme. I actually carry a note on a prescription from one of my doctors TO other doctors saying I have the most extreme case they have ever seen and to treat me appropriately because so many docotrs know so little about it and when you tell them you have pressure urticaria they blow you off as getting a mild case of hives. Instead of getting mammograms, this allows me to get MRIs and insurance has to cover it because it's medically neccessary in my case. You wouldn't believe what a mammogram does to me! LOL! I had a couple of lumps removed last year and they had to start me on steroids intraveinously before the surgery and I had to fight them about putting the leg pressure cuffs on me and they wanted to put the automatic blood pressure cuff on me that stays on you and takes your pressure every few minutes! They just don't know how to deal with it.
The way I found a diagnosis was reading an article in a doctor's office for another fruitless appointment, about Jane Pauley having this mysterious disease. It sounded so much like what I was dealing with, I went home and looked up what she said she had, delayed pressure urticaria, and there it was! After all those years of pain and frustration over the lack of a dianosis or a name to put to this mess. Finally, I wasn't a freak anymore! When Jane showed back up on TV, I pictured her sitting there barefoot, and in very baggy clothes from the waist down that the camera didn't show. LOL! Her story said that the steroid regimen she was on drove her to madness and she almost killed herself. I downloaded the info I found and took it to my next appointment and it was finally confirmed. It took me, though, not a doctor.
I only take a small dose of steroids and not regularly. I don't want the problems they cause from long term use. I don't really have a set regimen, yet. I only recently found this rheumatologist but I feel he IS going to make some headway with me. I just hate all the time, money and frustration I wasted on GPs, Allergists, Internal Medicine, Endocrinologists and holistics before finding someone who could help me. Right now I am on Plaquenil and it's helping a little, not much. There is another drug my doctor wants to try at my next appointment and he has hope they will find something for me. The markers I know they looked for was high levels of ANA, Antinuclear Antibodies? And the welts and swelling they could see on me! Those high levels actually gave me a Lupus diagnosis at one time, but now they know it's not Lupus. I don't know what you can do to boost your immunity enough to fight this from progressing. If you do, please let me know!
I haven't worn jeans in years because they bunch up around the top of the thighs where your legs meet and at the back of the knee! Good luck finding a pair that doesn't. Maternity clothes have gone more fashionable lately but those wide, rolled, bands that have have become the rage are a nightmare. I cut it in the back and my shirt hides it. NO belts. NO panties. I even quit carrying a purse because of the straps. But I carry a cute Dolce & Gabana wristlet and am still fashionable and it carries my cards and ID, just not all my junk I'd like to carry in a purse! LOL! Fortunately, the loose empire shirts are in style so I don't feel like I am out of style wearing these loose shirts. When I'd get up in the am and get dressed I wouldn't be swollen and I'd put on stuff that fit me, but as they day wore on and I swelled, the clothes became tight and uncomfortable so the maternity clothes allow me to swell into them. Yes, I have been asked when the baby is due and that hurts, but what else can you do? I already told you about Mootsie Tootsies in my quest to find fashionable yet comfortable shoes. I think the thing I do most is to try and NOT do anything to bring the painful swelling on. That's why I have no life. I am afraid to do anything physically. I gave up golf! But after finding this site and reading some of these posts I think that my weight gain has worsened my symptoms, too. I know it's destroyed my confidence and makes me feel awful.
My hope for you and anyone else reading this, is that you won't mess around like I did with all the things and Drs that were a waste of time and money. Just go ahead and go to a rheumatologists at the start. Maybe that will make a difference. If you don't get the Epi-Pen, at least keep some Benedryl on hand. If you take it at the first sign your throat is swelling, and it will, eventually, when it gets around to your face, it will work and the pen isn't needed. When I noticed it had gotten to my face was after I had squeezed a zit on my chin and that night I looked like WitcheyPoo with my chin all swollen but I still didn't think I'd go into anaphilactic shock and I didn't at first. It was gradual over time. Good luck and let me know what you do! Barbara
The way I found a diagnosis was reading an article in a doctor's office for another fruitless appointment, about Jane Pauley having this mysterious disease. It sounded so much like what I was dealing with, I went home and looked up what she said she had, delayed pressure urticaria, and there it was! After all those years of pain and frustration over the lack of a dianosis or a name to put to this mess. Finally, I wasn't a freak anymore! When Jane showed back up on TV, I pictured her sitting there barefoot, and in very baggy clothes from the waist down that the camera didn't show. LOL! Her story said that the steroid regimen she was on drove her to madness and she almost killed herself. I downloaded the info I found and took it to my next appointment and it was finally confirmed. It took me, though, not a doctor.
I only take a small dose of steroids and not regularly. I don't want the problems they cause from long term use. I don't really have a set regimen, yet. I only recently found this rheumatologist but I feel he IS going to make some headway with me. I just hate all the time, money and frustration I wasted on GPs, Allergists, Internal Medicine, Endocrinologists and holistics before finding someone who could help me. Right now I am on Plaquenil and it's helping a little, not much. There is another drug my doctor wants to try at my next appointment and he has hope they will find something for me. The markers I know they looked for was high levels of ANA, Antinuclear Antibodies? And the welts and swelling they could see on me! Those high levels actually gave me a Lupus diagnosis at one time, but now they know it's not Lupus. I don't know what you can do to boost your immunity enough to fight this from progressing. If you do, please let me know!
I haven't worn jeans in years because they bunch up around the top of the thighs where your legs meet and at the back of the knee! Good luck finding a pair that doesn't. Maternity clothes have gone more fashionable lately but those wide, rolled, bands that have have become the rage are a nightmare. I cut it in the back and my shirt hides it. NO belts. NO panties. I even quit carrying a purse because of the straps. But I carry a cute Dolce & Gabana wristlet and am still fashionable and it carries my cards and ID, just not all my junk I'd like to carry in a purse! LOL! Fortunately, the loose empire shirts are in style so I don't feel like I am out of style wearing these loose shirts. When I'd get up in the am and get dressed I wouldn't be swollen and I'd put on stuff that fit me, but as they day wore on and I swelled, the clothes became tight and uncomfortable so the maternity clothes allow me to swell into them. Yes, I have been asked when the baby is due and that hurts, but what else can you do? I already told you about Mootsie Tootsies in my quest to find fashionable yet comfortable shoes. I think the thing I do most is to try and NOT do anything to bring the painful swelling on. That's why I have no life. I am afraid to do anything physically. I gave up golf! But after finding this site and reading some of these posts I think that my weight gain has worsened my symptoms, too. I know it's destroyed my confidence and makes me feel awful.
My hope for you and anyone else reading this, is that you won't mess around like I did with all the things and Drs that were a waste of time and money. Just go ahead and go to a rheumatologists at the start. Maybe that will make a difference. If you don't get the Epi-Pen, at least keep some Benedryl on hand. If you take it at the first sign your throat is swelling, and it will, eventually, when it gets around to your face, it will work and the pen isn't needed. When I noticed it had gotten to my face was after I had squeezed a zit on my chin and that night I looked like WitcheyPoo with my chin all swollen but I still didn't think I'd go into anaphilactic shock and I didn't at first. It was gradual over time. Good luck and let me know what you do! Barbara
Hey everybody,
I have had symtoms for a year and a half now. It took the doctors about one year to figure out what was wrong with me. As described in scientific articles, they now put me on Montelukast (medicine name Singulair 10mg) which is an anit-leukotriene medicine. This more or less works fine. It's something they use to treat astma, and has no known long term effects. I've now been taking it for two months and whealfree. It's very likely that this drug dus not help all DPU patients, but maybe some usefull information. I wear german footware, Birkenstock. It's not very fashionable (they are wide, flat and have cork soles) but after you broke them in (severe pain for three or four days) they do the trick for me. I wear a lot of skirts and dresses, they usually are not very thight and don't give me hives. After reading all the posts, I know now that the form op DPU I suffer is very mild and is nothing compared to others. But I will never forget the sleepless nights due to pain in my joints, hands, feet.
I wish everybody a lot of strenght in finding a good way to deal with this disease!
I have had symtoms for a year and a half now. It took the doctors about one year to figure out what was wrong with me. As described in scientific articles, they now put me on Montelukast (medicine name Singulair 10mg) which is an anit-leukotriene medicine. This more or less works fine. It's something they use to treat astma, and has no known long term effects. I've now been taking it for two months and whealfree. It's very likely that this drug dus not help all DPU patients, but maybe some usefull information. I wear german footware, Birkenstock. It's not very fashionable (they are wide, flat and have cork soles) but after you broke them in (severe pain for three or four days) they do the trick for me. I wear a lot of skirts and dresses, they usually are not very thight and don't give me hives. After reading all the posts, I know now that the form op DPU I suffer is very mild and is nothing compared to others. But I will never forget the sleepless nights due to pain in my joints, hands, feet.
I wish everybody a lot of strenght in finding a good way to deal with this disease!