Attack of the Hives! HELP!

Discussion in 'Fibromyalgia Main Forum' started by CFIDSNicole, Apr 14, 2005.

  1. CFIDSNicole

    CFIDSNicole New Member

    I am not sure if my recent problem could be related to CFIDS or not, but I am posting here to maybe find out.

    For the past few weeks I have been having problems with odd rashes--random places, different looks to rashes, random times. Around the same time I also developed pain behind my breastbone. So, I went to see my GP she didn't know what to think of the rash, but thought the pain was reflux disease, so that day she started me on Zyrtec and Aciphex.

    In a week, I developed these huge red bumps--some itchy some not. My feet and ankles swollen, generally itchy, just awful. Went back to GP, she said allergic reaction, likely hives, probably to the Aciphex, so she switched me to Prevacid SoluTab.

    Another week passed, and I started getting rashes and lumps and swollen--but on top of that, I developed an upper-resperatory infection--ear infection, throat problems, etc. Went back to doctor--GP is in Jamaica this week, so saw an NP. She thought it might not be the Prevacid but maybe the Zyrtec.

    So, she said--do't take the Zyrtec, and take OTC generic rinatidine for the reflux.

    Well, my reflux seemed to get worse. And, I developed two huge swollen lumps on my forehead (over each eyebrow)--I ended up looking deformed. Then Tuesday I woke up and my right eye was almost swollen shut.

    I felt like I was going to die on Tuesday--seriously--between the upper resperatory infection and the itchy hives from *ell, and the reflux pain, I was one hurting unit.

    So, today I am developing even more rashes and lumps--on my head along my hairline in scalp, on arms, on trunk. My upper-resperatory problems seem to be getting better.

    I saw my dermatologist Monday and she said I might just be going through a rashy period in my life and even if I had allergy testing done, it was likely that I would never find out what triggered the hives. I do have eczema, but it is pretty mild.

    I did some research on hives, and it seems that mine are more of the angioedema variety--they are huge under the skin swellings and most of them are not red, but I do have a few that are red and that are smaller and itchy.

    Has anyone ever heard of CFIDS causing one to develop frequent problems with hives/angioedema even if they never had that problem before?

    My main problem the past couple days has been the back of my head and neck--lots of swollen lumps--and my ears are hot, itchy, and a little swollen behind them. I am most worried about developing a swollen lump in my throat--I don't want to suffocate in my sleep. And, tonight, my throat, which has been pain free for a good day, is killing me, and I am afraid it means that it is starting to swell.

    Thanks--it is a bit embarrassing to have to go out looking like Quasimodo!

    Please, any advice? Please?


    [This Message was Edited on 04/15/2005]
  2. PVLady

    PVLady New Member

    Claritin is very good for skin allergies - I have had hives off and on for years and it works well. All of your symptoms sound like something serious is going on.

    Have you considered seeing an allergist? Hope you are better soon.
  3. foxglove9922

    foxglove9922 New Member

    Hi Nicole,

    I'm so sorry to hear that you've been going through so much. Although none of here are really able to give medical advise, I am perplexed a little about discontinuing the Zyrtec as it is an anti-histamine that normally works well for hives.

    Have you started any other new meds recently, in particular--antibiotics. Normally hives are brought on by something you ingest.

    Since becoming ill with CFS, I've been through many bouts of hives and have many food and drug allergies. It is so tough sometimes to try and pinpoint what is bringing it on.

    Please be careful, hives are nothing to monkey around with.

    Also, keep us posted on your progress. Wishing you a peaceful day. Debi
  4. CFIDSNicole

    CFIDSNicole New Member

    PVLady-I haven't really thought about going to an allergist, but you might be wise. So far, the people I've talked to about this don't seem to think it is a big deal. The PA I talked to on Monday (the one who took me off Zyrtec) seemed to think oh--maybe it's just the pollen, or, maybe it's the Zyrtec. The dermatologist didn't seem to think it was that big of a deal, either. Well, I am living in this body, and to me it is a big deal. Last night I woke up twice coughing and couldn't stop. I wonder if I didn't have a swollen lump in there. Today the throat pain is gone, but it feels a bit itchy in there.

    Foxglove--No, I haven't started anything else lately. The next latest addition would be Diflucan, but that was at the end of January, and I was on it for a whole month with no allergy medicine and didn't have any problems like this.

    Oh, and after the first allergic reaction (to the Aciphex, allegedly), the doctor put me on a week of Prednisone pills to stop the reaction.

    I wonder if I haven't developed a bunch of new allergies--food and drug, I just don't have the faintest idea what they are. I have never been an allergy person. My mom and sisters would be miserable in the Spring and in the Fall, and my dad and I just felt sorry for them. I have always been able to eat anything and everything I want with absolutely no problems whatsoever.

    Oh, and I thought it was very weird for the PA to take me off Zyrtec, too--I would probably be the only person on the face of the earth allergic to Zyrtec. It didn't make sense.

    But, I was told that food allergy testing is a scam test and that they are very unreliable, and I know you can do an elimination test, but I honestly haven't a clue where to start. I am not eating anything different or unusual.

    I am so frustrated!!

    Thanks again,Nicole
  5. CFIDSNicole

    CFIDSNicole New Member

    Anyone else with any ideas?

    I was pretty okay today with the itching--I took some benadryl around 1 or 12 or so today. Then, I went out and got a sugarfree latte and a big chocolate chip cookie (shame on me, I know!, but I have had a horrid week and somehow felt I deserved it). Well, now, I am getting hives on the right side of my stomach/waist/hip area, on my right calf, and on my butt.

    So, here are my thoughts. I am supposed to be on an anti-yeast diet, but have been lax lately, and I am supposed to be on Diflucan every other week (this would be an on week, but because of the hives, I haven't taken it). Could the sugar from the cookie have some how encouraged the yeast to cause the hives? Or, could it be the gluten from the flour? Or, am I completely crazy?

  6. NyroFan

    NyroFan New Member

    My first line of defense would be to see a dermatologist ASAP. They can give the best relief possible.
    Just a suggestion.
  7. CFIDSNicole

    CFIDSNicole New Member

    Funny you should say that--I saw my dermatologist on Monday--and I started developing a new angioedema welt while I waited for her in the examining room. She poked at it and looked at it, but she just said that they did a big study on people with hives and found the cause of them in only 10% of the people in the study. She disagreed with the PA's thought of being allergic to Zyrtec and said she thinks it is something I should take, but that's all she said.

    No one seems to be taking this very seriously--except for me, the one who has to live in this body. And, those of you who have responded, of course.
    Thanks so much!!
  8. Bunchy

    Bunchy Member

    Last year I had exactly the same as you but with a fever and chest pain and pain urinating. Turned out I had a rather weird virus and my body had an allergic reaction to it that caused the hives and swellings. It went after about ten days but I was exhausted afterwards. It helped to stay cool and take antihistamines, though they only took the edge off. But see your doc again if it gets too awful.


    Bunchy xx
  9. jhmitch

    jhmitch New Member

    Hi Nicole!

    My heart goes out to you because I know how frustrating it can be to endure hives.

    For 6 weeks I went through a similar hive outbreak. Sometimes the hives linked together and formed one big raised area of the skin and other times they would be individual bumps.

    In the end, I saw an allergist, had a bunch of tests done and they revealed nothing except I was having some sort of an allergic response to something (cause unknown). This doctor also said that sometimes when one's body is fighting an infection (or worse), it can get a little carried away and provoke a case of hives.

    My GP ran blood tests to see if anything was (otherwise) wrong with my health but the results were OK.

    To help you get through this, I'd suggest that you get some Aveeno skin cream (the one with oatmeal) which is over the counter.

    I was also given a syrup called hydroxyzine
    (which is the generic name) that is prescribed by allergists. It is stronger than over-the-counter drugs but the draw-back of this particular med is that it will make you very tired. Usually I use it only at night.

    Also, I was taking Zyrtec until the allergist began weaning me off of it. Now I just take the hydroxyzine syrup.

    If there is any hope in all this it is that gradually the hives seemed to phase-out. However, I was warned that suddenly stopping allergy drugs (rather than tapering off of them) can cause another outbreak of hives.

    It doesn't sound like you've been given anything to replace the Zyrtec which is surprising.

    Take care of yourself and I hope your itching stops soon!

  10. fairqueen

    fairqueen New Member

    Nicole, I feel so sorry for you! I know just what you are going through. I went through AT LEAST 7 weeks of hives this winter. My hives were an adverse reaction to Effexor (among other reactions). That was just the tip of the iceberg. My neurologist took me off of Effexor, and put me on Paxil. Both drugs are SSRIs. Well, I continued to break out in hives, only worse. I have a slight problem. I have restless leg syndrome and cannot take most antihistamines. They exacerbate RLS. I went to a dermatologist who promptly told me, after charging me $80, that he could do nothing for me. I would literally cry night after night. I thought i would go crazy. The itching and burning. I scratched until I bled. My husband would tell me "just don't think about them and they won't itch"! Of course, he was just trying to help, but please! I have scars from scratching. Like you, no one would take me seriously. Not my GP, not the dermatologist. AND, my neuro hung up on me when I confronted him about Paxil being in the same drug family as Effexor. I was nice, but firm and he didn't like the fact that I was telling him about a drug. He is no longer my neuro. It was a vicious cycle. I would break out, I would get upset. I would get upset, I would get hot. I would get hot, I would breat out. You get the picture. The one night, I broke out all over my face. That REALLY scared me. Finally, my hives started to go away just about the time that I discovered that I could tolerate Claritin. Claritin helps, thank goodness. Hives are serious. But, they are just another thing that we are not being taken seriously for. Good luck and I'm really sorry for you.

    [This Message was Edited on 04/15/2005]
  11. CFIDSNicole

    CFIDSNicole New Member

    Bunchy--interesting story--I was actually kind of wondering about something like that. I have been ill with upper-resperatory stuff and ear infection-type stuff and I wondered if it might be a weird immune system response (Lord knows our immune systems are messed up). I will keep icing myself and taking my Benadryl

    Jhmitch--Well, at least the dermatologist wasn't lying about not being able to find the cause of hives in most cases. It must have been even more frustrating to actually see an allergist, pay for all that testing, and still have gotten no where! Nope--I wasn't given anything to replace the Zyrtec. The PA thought I had started too many new medications at once (though it was my doctor's idea, not mine). I'll see how this weekend goes; I might end up calling in an appointment to see my doctor. And demand to be listened to.

    fairqueen--You know, I worried about taking Benadryl--I didn't start taking it until this week when my eye swelled up. I was worried because even though I haven't been diagnosed with RLS, I suspect I have it (I have a sleep study in May) and I have tried Tylenol PM in the past month or so, and it gave me the worst case of twichy legs and this horrible crawling under the skin feeling in my legs. Sleep was impossible, so I was very worried about taking the Benadryl, but surprisingly when I took it, I didn't a reaction like that, and my understanding is that the active ingredient in Tylenol PM is benadryl. Who knows? So, I feel very badly for you that you didn't find anything until the end. I would scratch myself to bloodiness, too if I didn't have teh Benadryl and an icepack to take the edge off. I know hives can be serious, so why don't doctors seem to take them very seriously?

    Anyway, thanks for all the sympathy (I'm not getting much from anyone else!) and the understanding and the tips and personal experience. At least I know I am not alone in the horrible experice of hives!
  12. foxglove9922

    foxglove9922 New Member

    Hi Nicole,

    You mentioned chocolate in a cookie that you ate and then got hives. Chocolate brings on the hives like crazy for me.

    You may want to start eliminating the most common food allergens, ie. chocolate, eggs, dairy, citrus, corn, wheat, etc. I'd start with the chocolate first,,,,,go several days without and then eat some and see what happens.

    Food allergies are a bugger to try and figure out especially once the hive reaction has been triggered because they are a bear to settle down.

    I had food allergy testing down by a very good lab and they diagnosed my food allergies perfectly. From what I hear it's very important to find a good lab.

    Best wishes......Debi
  13. foxglove9922

    foxglove9922 New Member

  14. scotlandrose

    scotlandrose Member

    A few months ago, I was getting these weird hives...big lumps, not very red or itchy, hard and somewhat painful to touch.

    I saw 5 docs in the Nashville area, all gave me allergy meds and shots.

    Even went to the ER one night because they were covering me and I worried about a really bad reaction or something. Got a big bill and more allergy medicine.

    These "hives" would come and go and show up almost anywhere.

    Finally got to my CFS doc who took one look at them and said, "You have a really bad yeast infection!" Gave me a prescription for Difulcan but I did not start taking it right away.

    A few days later, I began having stomach/chest/throat pains. Called the doc and he asked why the h*ll I had not started the Diflucan yet. The yeast in my gut was way outta control.

    Started the Diflucan and anti-yeast diet. Hives went away almost immediately. Stomach is still fighting with me but I am on the way to gettig well.

    Check out other signs of yeast infection. Dr. Billy Crook was actually my childhood doc when I had allergies. God was I lucky to have him. At the time, people in Jackson TN thought he was a quack, but he was a genius. He died a few years ago, sadly. Walked out his front door to work and dropped dead on the spot with a stroke. He was a great doc and man.

    Check into a yeast infection. Could be yeast and allergies.

    Good luck!

    Sorry, Dr. Crook's professional name is Dr. William Crook and his books are called THE YEAST CONNECTION.

  15. CFIDSNicole

    CFIDSNicole New Member

    Oooh--you both said things I don't want to hear!

    Chocolate? God, i would die if I couldn't eat chocolate. I don't eat A LOT everyday, but I do have a bit everyday. I was actually wondering if it might be a reaction to the flour in the cookie--a gluten sensitivity/allergy?

    I am supposed to be on an anti-yeast diet, and really, I have been very good about it the past week or two (a few cheats), so it will be hard for me to do all this food allergy elimination. I am concerned that we don't have a good food allergy testing lab around here (I'm in South Dakota).

    So, Scotland rose--I was wondering if it might be a yeast reaction of some sort. As I type this I am THIS close to skinning myself alive!!!!!

    See, this last week was supposed to be my week on Diflucan (I do one week on and one week off per doctor instructions), but I didn't take it because I didn't know what the heck was going on and if the Diflucan might be part of the problem.

    I think I might go back to the doctor tomorrow (she should be back from Jamaica, I hope). She isn't my CFIDS doctor; I am beginning to wonder if I should go see him. At first, I went to see her for the chest pains and the rash, which wasn't nearly as bad as it is now, because I didn't think it was something to bother my overly busy CFIDS doctor with.

    AUGH! So, yes, anyone reading this, I am still here itching, itching, itching and trying not to scratch, scratch scratch. I was feeling pretty bad for a couple days, so I haven't visited the board much. I'll try to keep you posted.

    Thanks so much--I will talk to the doctor about the possibility of food allergies or yeast.
  16. puggymom

    puggymom New Member

    Since December I get red itchy bumps, sometimes I go weeks without any then I am overcome. Rhuemy thinks itmight be the Mobic he put me on after Vioxx was pulled. Now I'm on nothing to see if any bumps come back.
  17. PVLady

    PVLady New Member

    Why are we bumping a message that is 10 months old? Maybe someone is asking about allergies?
  18. Dee50

    Dee50 New Member

    I've gotten hives my whole life. I can say that once I break out in hives everything and anything can make them worse.

    I have always used Benadryl. Sometimes I have to double dose once, mainly because I didn't take it soon enough in the first place. I take Benadryl in my rash faze before they turn into big hives. I know that for me if I've got a rash the hives are soon to follow.

    But when they move into your throat you are in big trouble. ER trip to stop them.

    I would look for something new to you that is airborne. Room sprays, cleaning products (bleach) ect...

    Stress will hive me up too.

    Hope you get better soon :)
    [This Message was Edited on 12/29/2005]
  19. JLH

    JLH New Member


    I am extremely sorry, but your subject caught my eye just as I was ready to shut down for the night (it's almost 2 am and I can't sit up any longer). So, I could only skim down your post and didn't have time to read any of your replies.)

    My son has a problem with hives from time to time. They can really be serious--close off your throat, etc.

    The minute you get them, or feel symptoms like you breathing is impaired, take an adult dose of Benedryl IMMEDIATELY.

    My son would get them so bad that he would have to go to the ER for a shot of something so he could breathe. But, even take Benedryl before you head to the ER!

    Years ago, we had to keep a med called Atarax (? I think) around for him.

    Just remember ... hives can be serious.

    Gotta go,
  20. alaska3355

    alaska3355 New Member

    your doc should prescribe an Epipen. This could be a lifesaver. This is the one you jab into your leg in an emergency situation. I carry one in my purse at all times...