Discussion in 'Fibromyalgia Main Forum' started by ABCDfamily, Aug 6, 2006.

  1. ABCDfamily

    ABCDfamily New Member

    Do new people to the board get ignored like this? I am reaching out for some advice and some kind of recgonition here. It seems I have a difficult time getting anyone to respond to my posts, however, I see some many responses to others. I would not be asking if I did not need the support and encouragement which is what I thought was offered here. Am I wrong on this assumption?

    I have been breaking out in hives. I have had loads of blood work done from my primary and the Rheumy. Is it something that any of you suffer from? This is a new symptom for me and I am having a difficult time dealing with it. I have read that those with CFIDS can suffer from it. I'm just a bit worried that they are missing something. If anyone has suggestions then PLEASE let me know.

    On Friday I was sent home from a client site because they were worried and wanted to get me to the ER as the hives were erupting right before them. It's odd, they seem to come and go and lasting anywhere from 5 minutes to an hour. This just started in late May, prior to that I had only gotten them when I started exercising or in super cold weather. Even then it was not all the time. If I start to feel myself get upset, I start getting hot and then the hives come. It seems very bizarre, imagine everyone knowing your every emotion. This can't be normal and I can't keep getting sent home.

    My DR. prescribed Ritalin to me to help me through the terrible fatigue. The hives have nothing to do with that as the hives started prior to the ritalin. I've heard that people just drop dead on Ritalin and no one knows why........kinda scary. It seems the people who suffer from anxiety are the ones most at risk. Those with CFS are now (from what I have been researching) being compared to those with HIV. There seems to be a lot of question about "this is the epidemic" and the Govt. has been covering it up. I would post the article but I understand you can't post anything here that can lead you to another site..........I've been warned. Curious as to everyone's thoughts and any feedback is welcomed.


  2. charlenef

    charlenef New Member

    that sometime you can just break out and nobodyhas the answer. my tenant broke out for 6 months at a time he was put on steroids until the would go down.his whole face would blow up. i never knew they could even get that big. i know this aint much of help but good luck
  3. janieb

    janieb New Member

    addressed. Since I'm fairly new here myself, I'm still looking for help.

    Is your diagnosis CFS? Sometimes it helps if you put that in your title line.

    I have FS, and CFS and I tend to be very specific in my title. It helps.

    Will list what I know. Have had this disease for 15 years and it's been a challenge, to say the least. For the last couple of months I have skin irritation that feels like bites. Last summer I had this and nearly destroyed our house and dog, treating and cleaning both. Really believe the problem is just me, since no one else notices it. It sounds like your hives are caused by emotions, so perhaps your doctor needs to give you something to relax you.

    Please realize that I'm far from an expert, but I did want to respond to your posting, and wish you the very best of luck with treatments. It's a wonder that you're able to work because so many of us can't. I took a big pension cut and retired early, but it's been worth it.


  4. ABCDfamily

    ABCDfamily New Member

    Hello Janie, Wakemeup and Charlene:

    Thank you for your response, support and encouragement. The only way I am able to work is because my DR. has put me on ritalin which makes my anxiety much worse, I think. The ritalin is to help with the fatigue. If I take something for anxiety after taking the ritalin (stimulant) I will not be able to work. As you may be aware ritalin is dangerous for people who have anxiety and some have dropped over dead with no explanation.

    I'm not sure what to do. My DR. does not know how to treat my CFS and Fibro. I feel like I am synthetic and taking drugs to combat fatigue, anxiety and you get the point. My emotions from being on stimulants to xanax are so far out of whack. I am beginning to feel desperate. I need to be well for my children. If I don't work I will lose everything and then I'm not sure that I would be able to go on. On the other hand, do I continue to stay on these drugs and try like hell until one of the drugs kills me? It is not fun and down right scary. My DR. who first diagnosed me said he knows how to help me and now he is saying I am complicated and does not know what to do to help me. It's frustrating and the hives make this whole deal a lot scarier. What do you guys do for fatigue? Since you all have this I do not need to explain the crippling fatigue, the shakiness, dizzy spells and whole body weakness.

    Thanks for reading.
  5. 1sweetie

    1sweetie New Member

    First I want to thank you for responding to an earlier thread of mine that I've failed to respond too. Your response meant a great deal to me and I thank you for your concern and help. I have had lots of health and personal problems and have not been able to stay on the computer as much as I would like.

    I had hives for 3 years many years ago. It was many years before I was diagnosed with CFS but as I look back at my life, I have been sick on and off since I was a teenager with strange things like hives.

    They never found the reason. Kind of reminds me of most things I have. I was checked for intestinal parasites which can cause hives and had to have the water checked at my home.

    The hives would be especially bad in "hot areas"...around or under panties and bras and after baths I would be covered in them. My eyes would swell nearly shut and I would feel my ear lobes getting hot and they would be swelling. The same could happen on my fingers. They moved on my body. Some of the patches were bigger than a grapefruit and then there could be clusters of smaller patches.

    I took Benadryl and soaked in oatmeal baths. I could not put on an ointment because they would move. The dermatologist finally put me on Atarax and it would stop the hives as long as would take the medicine but as soon as I would attempt to stop the med, they would be back. Eventually, after 3 years, one time I stopped taking the medicine, they did not return. The only other time I have had hives was when I was given the old iodine solutions that they give you before MRI's.

    I know that they can make you miserable and it is still a mystery to me. Since I have been severely sick, I think back on all the weird things that have happened to me over the years.

    Again thank you for helping me and I am sorry that I can't tell you what is causing it but Atarax may stop it.
  6. ilovecats94

    ilovecats94 New Member

    Don't take it personally. I get ignored too and I've been here 2 years.

    The problem is not many people probably have experience with hives. The only time I got them was when I was on Pen-Vee K antibiotic back in 1981.

    I didn't answer your post because I didn't think that case of hives would help you any.

    Sorry... No harm meant... I have FMS, not CFS, that I know of.

    I thought that hives were generally an allergic reaction to something.

    My son, who is 27 years old has been on 20 mg. Ritalin SR since he was in the 4th grade. He is an HVAC technician now and does well. He has ADHD, though.

    Well some people do post URL's here that lead to other sites but if they sell any supplements, it is against the rules.

    I wish I could help you. I just don't know...

  7. optimistic1

    optimistic1 New Member

    I'm very sorry your problem has not been adressed. Hives are certainly a terrible problem and probably one of the most difficult ones to treat.

    I worked for several Allergists for 23 years and I don't envy you. Have you checked with an Allergist? Sometimes after testing they can track down the culprit. Blood work might not be enough.

    In many cases patients become allergic to a medicine. Doesn't have show up when you start the med. It can show up anytime.

    As to your not being addressed I felt the same way when I started here. Finally someone posted some suggestions as to how to get attention to a Post. It might help to be more specific when you start a question. This will attract more members. Just a thought.

    Hope you can get your problem solved----I know its a big one and can make one most anxious and sick.

    I wish you much luck and send many blessings,

  8. I don't know about hives. I broke out in a sun rash a couple yrs ago and never had before. Weird. Keep bendyrl on hand.
    As for no responses like someone said old members don't get responses either (myself included) and this is a fast moving board.
    Members need to remember to also Answer others posts if they want theirs answered. JMO.
  9. Marta608

    Marta608 Member

    Sometimes if people can't help, they read and move on. They should at least bump the post so here you go.

    Good luck.

  10. ABCDfamily

    ABCDfamily New Member

    No doubt that everyone here is a good person. I also, too, answer people when I am on this board. I try and give back, I am not a taker by any stretch of the imagination. I'm a firm believer in helping others. We all here are in need of some kind of support, be it, emotional, supportive, educational, etc.

    I want to say "Thank You" to those of you that did answer with helpful information and those that just wanted me to know they were here to say "hi"

    In closing to those that did respond or would like to. It has always been my impression that all over body hives, hives in the neck and face region are considered dangerous. How do you know when to ignore this? When does a DR. say "we need to do something about this"? None of my DR's seem concerned. I am on Zyrtec 10. mg a day, will this prevent a life and death situation? I still get hives on this medication so I can't even imagine what it would be like if I were not on this allergy medicine. Now I am taking benadryl on top of zyrtec. [This Message was Edited on 08/06/2006]
  11. rosemarie

    rosemarie Member

    I was working a few years ago . I worked at a craft store and while I was home I tripped and smacked my left knee and it was in a brace. My boss put me on light duty. I got to sit and put the fresh wool in to smaller bags.

    AS I sat there all day pulling wool across my pant legs I got itchey and did not really give it much thought.
    That was till I got home and I broke out in The worst case of hives I had ever seen. I had hives acroos my tummy that were so big that it didn't take many of them to cover my tummy up. And they itched to bad that I kept taking bendryl till it doned on me that I had OD'ed on benydryl.

    I went to the ER was given a couple of shots and visteril and sent home. Before they were gone they had traveled from my stomache to my thighs, hands, neck, the front of my face and even the back of my head.

    I didn't know that you could swell on the back of your head but you can. And I looked horriable. I didn't go to wrok for 2 weeks as it took that long for all the hives to go away. And I have never itched so much in my life and it was horriable.

    So I really understand what your going thro with these hives. I went to the ER a couple of time and I was given shots and I am alergic to steriods we found out during that time.

    I Lived with hydrocoizone lotion, a really spendy hydrocozone cream and then over the counter creams. And I was to take benydryl, visteril, and to try and stay calm as I could, For me they seemed to spred when i was upset and stressed out.

    So I am so so sorry for you to haave th ere hives as they are no fun at all and I thought that I was going insane from all the icching that I had.

    So my best advise is to get some hydrotizone cream that is over the counter and to see in your doctor will prescribve for you visteril, and a perscription stregnth of hydrocotizone cream it really worked well for me.

    And get some beneydryl too .
    I Hope that you get feeling better soon.
  12. Pianowoman

    Pianowoman New Member

    I have never had hives but have had other skin problems which may or may not be associated wIth CFS. I do understand your concern that the hives are not going away.
    I think Stormyskyes's suggestion about keeping a diary is a good one. You may be developing a number of allergies. Perhaps you could ask you doctor for a referral to a dermatologist or an allergist.

    I hope you find an answer
  13. Smiffy

    Smiffy Member

    I've just answered your first post, which had travelled to page 2, & then seen this one. The board can move pretty fast at times, we're not ignoring you.
  14. 69mach1

    69mach1 New Member

    i have had them hives...both from nerves and also from allergic reacion from meds...but those don't com and go...

    go see a dr...

    oh i hae carpal tunnell and tendonitis in my right some times i just can not reply like of lot of don't take anything personally..

    you can bump it to the top as well...

  15. rockgor

    rockgor Well-Known Member

    every now and then. Posted one like it myself.

    The problem is we have so many members posting. The board moves fast. Many people here have trouble sitting at the computer, vision or cognition problems, etc.

    I have had CFS for 26 years, but have never had hives. But as we all know, these DDs have lots of symptoms.

    (This is the first message I have seen posted by you.)

    Here's what the Readers' Digest home remedy book says.

    A cool bath w/ colloidal oatmeal (like Aveeno) is helpful.

    Apply any of these: calamine lotion; witch hazel; milk of magnesia; Pepto Bismol.

    Make a paste w/ water and baking soda or cream of tartar and appy. Mix 3 parts lukewarm water w/ one part any kind vinegar; apply w/ cotton ball or tissue.

    Take fish oil. 1,000 mg. 3 x a day. Same dose of Vitamin C.

    Good luck.
  16. blessedmom2four

    blessedmom2four New Member

    i seen your post on drinking , but since i dont drink i dont respond, then i read your one on the wheat allergy thing, and i didnt know how to help there either.

    if i dont know how to help i just skip it, if it is on page 2 or 3 and not alot of responsees i bump.

    now about the hives, i had hives once, they were so bad i had them on my head all over my body, i went to the dr. and he couldnt get rid of them with zyrtec, so he sent me to a dermotoligist i think they are called.

    for the life of me i cant remeber the name of the medicine that got rid of them and i have no clue what caused them.
    maybe you can see a specialist.
  17. tata1580

    tata1580 New Member

    Well I have never had the hives..but seems like that is another wonderful thing to look forward too...I tell my husband he did not get a trophy wife he got a novelty act!! Seems like everyday it is something new..

    But I did want to tell you welcome and I hope that you find an answer...may wise and wonderful people here!

  18. sascha

    sascha Member

    yes i had this, and a lot of other skin problems. i am very sensitive to things that touch my skin. recently i broke out from a skin block for sensitive skin and it took a long time to go away. heat, sun, oils, perfume, wool, shampoos, detergent, soaps- these and other things i can't remember caused skin reactions.

    my skin is better since i started taking Udo's oil, and more recently coconut oil (both taken internally).

    even skin lotions bought at a health food store would make me break out at one time.

    but i am better now. i notice i can sit in the sun if it isn't too hot, and it doesn't hurt. that's an improvement!

    good luck- sascha
  19. mrstyedawg

    mrstyedawg Member

    I have had CFS for 22 years and I do not break out in hives. CFS is different for everyone. I read in your bio that you have PoTS/dysautonomia. I, too, have beend diagnosed with POTS and Neurally Mediated Hypotension and Autonomic Nervous System Dysfunction. I think that this is all part of CFS.

    I also read an article about the GOV. and this disease. I agree that they have been covering this up for many many years.

    I, too, recently remarried to a "Hot" man and have two children and one stepdaughter. It seems we have a lot in common. I have not worked in years. I have declined to the point that work would be impossible.

    Good luck to you,
  20. monicaz49

    monicaz49 New Member

    a simple thought...but it could be from just environmental/seasonal allergies.....sometimes i get this and i take tylenol allergy. and it goes away.

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