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We need to raise attention on CIU

March 1, 2018 by Forum Member

People, even doctors and health professionals, dismiss CIU as nothing of major concern for most people, even going as far as to tell them they are either imagining things or supplying them with antihistamines and then hoping they wont have to deal with these people (mainly, in my opinion, because doctors don’t know what this condition is and they have not been trained to be doctors as doctors traditionally were: scientifically inclined individuals who investigated and came to the best logic and reasoning).

Unfortunately, this approach has been replaced to a large degree by doctors who come out of “doctor mills” due to a growing population, and use the excuse of not being able to “know everything” to dismiss conditions they don’t know anything about. They simply don’t have the education and ability to address CIU. In fact, asking them to help with the condition may even anger some doctors, as they know they don’t have the education to address any real condition that would require a highly trained scientific individual.

My concern for the aforementioned is the following: I know many people have severe symptoms as I have read in news reports of some women who is home bound and covered in hives through the day. She lost all her friends and is basically a shut in.

The fact of the matter is that I would say a majority of people in a “severe” category simply would just commit suicide, the reason being that doctors need persuading and convincing just to get over the counter antihistamines which can run, in Canada mind you, about $100 a month (and no, health insurance does not cover CU medication).

What I’m afraid of is that people with severe CIU are suiciding due to distress and extreme emotional and physical pain. But it is going unnoticed and unchecked, because there is no sign of the condition, so it would seem to any person, that this individual was stressed out and a shut in for a few months, then just killed themselves.

We need to somehow begin studies and recruit real scientists to our cause. This I admit will be difficult due to the fact that people usually get this condition for 1-3 months, and the people who suffer for longer, once they are cured, never want to hear about this condition again in their lives.

Regardless, something has to be done, or I’m afraid more people might just suicide as there is no end to the levels of pain for severe cases.

Regards,

James Maloy

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Comments

  1. Anonymous says

    March 1, 2018 at 11:59 am

    I agree I take Predisone and Benadryl and it went away sauna before workout.

    • Anonymous says

      March 1, 2018 at 1:23 pm

      Although this had nothing to do with what he was talking about in the post. I must say that sauna treatment can help you, but mind you! This isn’t a cure, nor is it really a treatment. Considering it may or may not work for you, based on how severe your CU is. Other medications also limit the severity of CU symptoms but they don’t treat it or cure it, meaning you’ll get hives/itching but you’ll feel it less. Also if you take them for a long period of time, your body will start building up resistance towards the medication. So eventually they won’t work either. Good luck though.

  2. Anonymous says

    March 1, 2018 at 12:12 pm

    I agree with you. I feel like I almost lost my son at the start of the school year. He is on Xolair, Gabapentin and Cymbalta and is feeling better now.

  3. Ahmad says

    March 1, 2018 at 12:33 pm

    totally agree with every word you just said , i just don’t what exactly can we do to make that happen

    • Locks says

      April 8, 2018 at 11:44 am

      Better education in the psychological aspect of treating patients with chronic conditions.

  4. Anonymous says

    March 1, 2018 at 1:24 pm

    Should we start a raise? Like maybe a group of people can start a petition or something to raise awareness or money for this? If that could help

  5. kimmy says

    March 1, 2018 at 1:44 pm

    Absolutely agree with you.

  6. kj says

    March 1, 2018 at 9:00 pm

    I have felt suicidal dealing with this condition and the doctors. I told one I couldn’t work and she refused to give me a note. I luckily found a Dr who gave me a note after I quit working already but the disability insurance wasn’t sufficient. If I didn’t have family support I probably wouldn’t be here today or I would be homeless for sure. Taking time off and getting really doped up helped. I slept for about a month and learned about how to better deal with anxiety which has helped my condition. I would help to try and bring awareness to this condition.

  7. Lauren says

    March 3, 2018 at 12:59 pm

    totally agree with you on this. I feel that in most cases doctors palm you off with every drug under the sun and no one really has the time anymore to sit down with an individual and work with them to understand the root problem/cause. I emailed a few universities over a year ago in desperation to see if any medical students would research this and i offered to be the guinea pig, unfortunately not one of them responded

  8. Jake says

    March 14, 2018 at 2:19 pm

    I 100 percent agree with you on this. I’ve had this condition for a year and 6 months now and have thought of commiting suicide many times! I guess the only thing that has kept me alive is the fact I got goals that i want to accomplish before I am 6 feet under. I am willing to do everything in my power to get awareness of this condition as I know the majority of people dont know about it and I think that doctors dont take it serious enough in my opinion.

  9. Locks says

    April 8, 2018 at 11:43 am

    This is a great post on the psychological aspect of the condition. I am a sufferer of CU since I was 13 and I have written my personal experience for the first time today. As a medical student in the UK (Physician Associate), the quality of life a person has when dealing with a condition is extremely important. It encompasses how they deal with it at work, at home and during their social life.

    There does need to be more “ICE-ing” from medical staff. ICE stands for Ideas, Concerns and Expectations. You ask the patient these three things to find out what is most important to them when going through a consultation. Obtaining this information opens up the possibilities for treatment options such as, counselling, CBT etc. Everyone wants to talk about how the condition is troubling them but few don’t feel like saying much about it if compassion isn’t shown.

    As a patient, I advise you keep a detailed diary of when you had the episode, how long it lasted and what the trigger was, if possible and take pictures of your hives when they become visible. As much physical information you can give to your doctor is a massive help alongside the history in a short consultation.

    I am happy to talk to others about the condition and how it affecting them and show support in any way that I can.

    Peace and Love,

    Locks

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