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  • Chronic Hives for 23 years and no diagnosis...

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    Old 06-11-2008, 12:10 PM   #1
    Itcheegirl
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    Unhappy Chronic Hives for 23 years and no diagnosis...

    Hi - Iím new here... Found this place while doing some internet research and yíall look like a nice group of people, so I thought Iíd join. I am a long-time sufferer of chronic hives. It started when I was 15, and I am still suffering from it at age 38, some 23 years later. Iíve been to endless doctors, who have given up and basically told me to just ďlive with itĒ. I do not have hive breakouts constantly. I experience flare-ups every couple of years that last for weeks at a time. I seem to break out mostly at the joint areas of my body (shoulders, elbows, wrists, hips, knees and ankles). I also experience the swelling around my eyes and on my lips.

    Whenever I experience a flare-up, I go to the doctor for the usual course of treatment. They do bloodwork and test me for Lupus, RA, MS, Epstein-Barr, schleroderma, etc. (the tests always come back negative.) I do a course of prednisone, I take benadryl and claritin, and then the doctor eventually throws up his hands and says that they canít give me a diagnosis, and that it appears to be some sort of auto-immune type disorder, but they canít figure out which one. Then, eventually the hives go away and Iím o.k. until the next flare-up.

    I came down with a nasty case of influenza back in April and was very ill for 8 days. I eventually got rid of it, but havenít felt the same since. I got a pretty bad case of hives again, have extreme lethargy and difficulty concentrating (brain fog), wheezing in my lungs and a weird feeling in my esophagus area (like I swallowed a giant pill and it got stuck...) I am wondering if I have chronic fatigue syndrome or something. I guess I will go back to the doctor and try to get to the bottom of it, but they never seem to know what to do with me.

    So, I thought Iíd tell my story here and see if anyone had experienced anything similar to this. It helps a lot to communicate with other people who suffer from these same ailments. The people around me, my family, even my husband are not able to really help. They are supportive but just donít understand what it is like to go through this. I was hoping this place might be good to share my experiences.

    So, there is my story. Iím kind of excited to find this place, and am looking forward to communicating with everybody. Thanks for reading!

     
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    Old 06-11-2008, 03:33 PM   #2
    Titchou
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    Re: Chronic Hives for 23 years and no diagnosis...

    Are you sure it was the flu? Could it have been a pneumonia strain? If so, you may have asthma now. That could explain your current symptoms.

    As for the rash issue, sounds like either the auto immune thing or a food allergy...and you only eat that particular thing on rare occassions. I am sure you've looked at that though?

     
    Old 06-11-2008, 04:45 PM   #3
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    Re: Chronic Hives for 23 years and no diagnosis...

    Hi Itcheegirl
    Does your skin ever break out in a rash or anything besides the hives? Have you every been to an allergist? If your skin has never had a break out or rash or anything I would go see an allergist. Because I was breaking out in hives and it was my allergy's. I was allergic to everything outside and allergic to cats and dogs,mold,dust ect. and everything almost inside. No food allergy's where found on a lot of different ones like peanuts,tomatoes,and wheat ect. Has your eyes every swelled? I have always had a lung problem because I have asthma so I couldn't say that my allergy's causes my wheezing but it does make it worse sometimes. I haven't had one of those attacks since I have been on my allergy medicine and I also take allergy shots. I hope this helps. Good luck. Let me know if you decided to go and what he or she finds out. I hope you find out what the problem is. Take care
    Trup20

     
    Old 06-11-2008, 05:07 PM   #4
    Itcheegirl
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    Re: Chronic Hives for 23 years and no diagnosis...

    Hi - thanks for your replies!

    trup20 - I have never had any type of rash, only hives, head to toe, swollen ears, swollen eyes and swollen lips (never any in my throat, though) I have been tested many times for food allergies and environmental allergies. The only food allergy they found is almonds. I have alot of allergies to different pollens, grasses, trees, and cats. I have nasal allergies year round and I do have asthma. The doctors have always thought of my hives as being caused more by an auto-immune problem, though, because they come and go. I take claritin and flonase on a daily basis pretty much all year round, and singulair and an albuterol inhaler or advair inhaler when needed.

    titchou - The dr. also thought I may have had pneumonia back in April. I had the symptoms for both that and influenza. They tested me for the flu and it came back negative, but dr. said that I had so many of the symptoms, that maybe my test gave a false negative result. So, in the end they decided that I had one or the other. I was like, whatever, I just want to get rid of it!! But I have been dragging ever since.


    Thanks again for your replies - it helps alot!

     
    Old 06-15-2008, 06:36 PM   #5
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    Re: Chronic Hives for 23 years and no diagnosis...

    Sounds exactly what I am going through. Have you had your thyroid physically and chemically checked? I have only been suffering for 2 years now though but basically the same treatments and answers, or lack there of. I take Allegra + Zantac during day and Zyrtec + Zantac at night, however, Zyrtec only if I am bad, because it makes me zombieish! I experience SEVERE lip swelling, sometimes eyes, at least once a week. The only allergies that came up during testing were grass and tree pollen...but it does explain why I am a lot worse in the spring and summer.

    Last edited by crushme; 06-15-2008 at 06:38 PM.

     
    Old 06-17-2008, 03:57 PM   #6
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    Re: Chronic Hives for 23 years and no diagnosis...

    Hi there,
    My symptoms and dx sound similar, only difference is timeframe. I'm just shy of having my hives for 12 months. They are very severe, like you. Swollen from head to toe, ears, palms, and sometimes big giant lips and eye's swelled shut. It has been the worst year of my life. My Dr has basically said my immune system is 'confused' and thinks it is fighting a disease that isn't there.

    I am currently on Zyrtec for day, and Singulair, Doexpin, Atarax at night. Prednisone thrown in on occasion when I swell too much or think I'm going to loose my mind! The only time the hives are gone is when I'm on a high dose of the Predn. One thing that *DID* control it is Sandimmune, many doctors are hesitant to use it, since it is an immunosuppresant. It is commonly used for chemotherapy and with organ transplants, I was only allowed to be on it for three months. I am hoping to go back on soon, since it's the most relief I've had this year. My Dr. said it often put's autoimmune hives into remission. Not so in my case, but she wasn't surprised since she said I have one of the worst cases she's seen in her lenghtly career.

    It might be worth checking next time you have a flare up.
    -Eris

     
    Old 06-17-2008, 03:57 PM   #7
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    Re: Chronic Hives for 23 years and no diagnosis...

    Hi there,
    My symptoms and dx sound similar, only difference is timeframe. I'm just shy of having my hives for 12 months. They are very severe, like you. Swollen from head to toe, ears, palms, and sometimes big giant lips and eye's swelled shut. It has been the worst year of my life. My Dr has basically said my immune system is 'confused' and thinks it is fighting a disease that isn't there.

    I am currently on Zyrtec for day, and Singulair, Doexpin, Atarax at night. Prednisone thrown in on occasion when I swell too much or think I'm going to loose my mind! The only time the hives are gone is when I'm on a high dose of the Predn. One thing that *DID* control it is Sandimmune, many doctors are hesitant to use it, since it is an immunosuppresant. It is commonly used for chemotherapy and with organ transplants, I was only allowed to be on it for three months. I am hoping to go back on soon, since it's the most relief I've had this year. My Dr. said it often put's autoimmune hives into remission. Not so in my case, but she wasn't surprised since she said I have one of the worst cases she's seen in her lenghtly career.

    It might be worth checking next time you have a flare up.
    -Eris

     
    Old 06-19-2008, 06:47 PM   #8
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    Re: Chronic Hives for 23 years and no diagnosis...

    Hi Erisitchy! I can honestly sympathize with you. I too have chronic hives and tonight I had to call the oncall allergist because even the light hurts my hives! My skin is so inflamed underneath and I have such huge welts and a temperature. I almost feel like I have a sinus infection starting, but it's like you can't do one thing out of the ordinary without getting a huge flareup. If I lay down, my skin is painful and when I get up more hives crop up. I will say a prayer for you tonight that you have even just a little bit of relief. I know how maddening and depressing this gets. I've been told everything from thyroid, to allergic arthritis, to sinuses, and I don't know what else. Who needs a weatherman when all we have to do is get up that day, look at ourselves and judge the weather! God bless you and I hope you feel better soon. Take care--Hopeto--

     
    Old 06-23-2008, 11:00 AM   #9
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    Re: Chronic Hives for 23 years and no diagnosis...

    Thanx for all your replies - it has been very helpful. I may need to bite the bullet and go back into the dr. This last week has been horrible - I am covered (literally) from head to toe with huge welts. Benadryl isn't even helping me anymore. My eyelids, lips, hands and feet have been completely swollen up - by nightime I can barely walk around because the bottoms of my feet are so swollen. This is the worst flareup I have had in a long time - may need to do some Prednisone and Atarax again...

     
    Old 06-27-2008, 11:12 AM   #10
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    Re: Chronic Hives for 23 years and no diagnosis...

    Wow, I don't know how you guys deal with this. I've posted in a couple of other places on this site....
    have you tried a food elimination diet, in which you eat just a couple of foods, like meats and certain veggies to start, and slowly add other foods back in to see if food is contributing? But a food allergy can show up days later. AND you have to pay attention to ANY ingredients, like the oils used in nuts in cans or jars. There are books on how to do this.

    Obviously, soaps, personal products, and their ingredients?
    What about inactive ingredients in medicines? I have a delayed lymphocyte allergy or reaction (elisaact.com) to povidone, a COMMON filler/binder in most pills - so when I'd take something for muscle spasm and pain, if it had that in it, it would help in one way, but make me worse in another. Amazing.

    Also, there are lots of chemicals in our cleaning products, air freshners (I almost passed out over a glade plug in, and SC Johnson Co won't tell me if any of my known allergens are in that, or another one of their products that caused a problem for me), scented candles .... it amazes me that companies don't have to list the chemicals we're exposing ourselves to.

    I've switched to Method, or 7th generation products for cleaning, basic shea butter or natural oil like almond, jojoba, etc. for skin lotions, basic glycerine soap, and done 3 or more day juicing 'fasts', during which I felt better and better, knowing something I was consuming was contributing to problems.

    Standard allergy testing should identify problems, but twice I was tested by the same place and they said I had NONE. When I became teary, saying I KNOW I have some and needed help, they did another type of test, and responded with a "Wow! Look at THAT!" when they saw the results. Some people aren't told to avoid antihistamines for 5 days prior to testing also.
    I'd be checked by different places, and different ways. The one mentioned above includes foods and chemical testing. Also check out a fav. site of mine, ewg.org, and their Skin Deep Section.

     
    Old 06-30-2008, 11:35 AM   #11
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    Re: Chronic Hives for 23 years and no diagnosis...

    I actually started a detox-type diet this morning. I have done food elimination diets before and had no luck with them, but I have heard alot of facts recently about how you can have this type of condition as a sort of reaction to chemicals and toxins that are in our food and environment. I figured it was worth a try. Plus, I have an appt. for a consultation with a new allergy specialist tomorrow, and I figured that is the first thing he will suggest, so I thought I would get a head start on it. (I have done this drill with new drs before, and they always start with a food allergy as the probable cause - been there, done that! :-)

    Last edited by Itcheegirl; 06-30-2008 at 11:38 AM.

     
    Old 07-15-2008, 12:11 PM   #12
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    Re: Chronic Hives for 23 years and no diagnosis...

    I also had the chronic idiopathic hives / autoimmune disorder diagnosis. I had hives for 5 years straight (also swollen lips, eyes). I got ***** tested twice and told I had no food allergies. I finally went to a naturopath and did food elimination diet, and turns out am quite allergic to eggs, fruits, and sulphites (smoke flavour). If i even have a muffin or one cookie (made from batch that share a few eggs then cooked) I break out bad. And have asthma symptoms for days. My family dr. recognizes it as egg allergy, but other doctors say since the ***** test was negative, then no allergy. So I explain it as an egg sensitivity and most doctors treat it the same as allergy.

     
    Old 08-12-2008, 02:35 PM   #13
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    Re: Chronic Hives for 23 years and no diagnosis...

    Well my case isnt as bad as all yours just three months but consistently, as soon as I think I have it under control it comes back, I have cut wheat out of my diet and Im taking vast amounts of cod liver oil, I take one phenergan at night, two cetrizine and a loratadine, and for the last two weeks its got better. Im pretty sure its the wheat, my doctor is no help, he's not really willing to put me forward for allergy tests until 'it becomes a problem'. Which going by some of the stories on here is true.

    I have a couple of questions.

    Have any of you who have had hives gone on to suffer other allergies (i mean cumulatively).

    Does anyone know of a good site or products for wheat alternatives?

    Thanks.

     
    Old 08-12-2008, 09:04 PM   #14
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    Re: Chronic Hives for 23 years and no diagnosis...

    Purplex, Bob's Red Mill brand has various kinds of flour, and is sold in health food stores, and even some regular stores. You can make cakes, cookies, your own crackers. Look for gluten free items. Health food stores also have several varieties of gluten free crackers, pretzels, cookies, pizza crust. Be prepared to pay high prices.

    Wheat hides in all kinds of foods you would never dream it's in. Find a celiac group in your area (or a website or forum), they live gluten/wheat free and can refer you to good sources. My group here in the states even has a baker who has done gluten/wheat free weddings.

    Last edited by roses4lace; 08-12-2008 at 09:08 PM.

     
    Old 08-12-2008, 09:09 PM   #15
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    Re: Chronic Hives for 23 years and no diagnosis...

    Itcheegirl, have you heard anything back from your new allergy specialist? Did they find out the reason for your hives yet?

     
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