Behcet's Syndrome Society

Request For Coping Strategies

Hi everyone,

You all seem so far away. I live in Canada and finding a local support group/community has proven to be difficult.

I have been diagnosed with behchets recently but have been suffering symptoms for much longer. Asides from the prescribed medications, I was wondering what you do to feel better when things get really rough?

Any advice would be much appreciated.

Thank you and take care.

UK

7 Replies
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Hi,

Welcome !

I am Cindy, we don't care where you are from, you have a home here! It is 2am here in California, USA, and I saw your post. I wanted to reach out to you and let you know we all try to help each other, especially the newly diagnosed. It can be pretty frightening and overwhelming stuff, but we will help you.

It depends on what you mean by "feel better".

Many people will respond to your post with their own remedies. You and your doctor need to talk them over to see which remedy is best for you. The nature of Behcet's, is it affects everyone differently. One person might have awful oral ulcers, or exhaustion plagues someone else.

But feel welcome here, to discuss what is going on with you and your body and ask questions.

But please try to be a little more specific about what symptoms you need help with. Sometimes just sharing with others can lift your spirits, knowing you aren't alone or crazy.

I need to get some sleep now, but I will check back later, to see how you are doing. To make sure someone answered your post and questions.

Feel free to send me a message any time! If I don't know an answer, I will be happy to research it for you!

Again, welcome!

Wishing you good luck and good health,

Cindy

Central California, USA

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Hi Cindy,

Thank you for taking the time to read my post and respond (especially at a time like 2:00am).

My recurring symptoms at the moment are:

- Oral ulcers (several, slow to heal, cause bleeding, happen in the same spots on gums)

Trying: Colchicine, Chamomile Tea, Honey

- Tendon/ Joint pain (most often in the legs, knees, ankles and elbows)

Trying: Heating Pad, Voltaren

- Calf pain (deep in the muscle, runs from knees to ankles in a linear path)

Trying: Heating Pad, Transition to Shoes with Good Support

- Costochondritis

- Eye pain (dryness, itchiness, pain in the back of the eyes, leads to headaches)

Trying: Hydrating Eye Drops (OTC)

- Exhaustion/ Fatigue

- Insomnia

I have found that going through all of this has led to a lot of anxiety, sadness, feelings of being isolated, as well as a loss of my previous sense of self.

I would love to hear about what it is that you have gone through/ go through on a daily basis, and the ways in which you keep your spirits up plus keep yourself healthy, physically and mentally.

Sending well wishes.

UK

Reply

Hey UK,

This group definitely is awesome, even remotely. Given the personal nature of many symptoms (lookin' at you, genital ulcers) it's nice to have the anonymity of the online world sometimes.

But that being said, there are some options closer to home as well...

Heres a link to the Canadian Behcets group facebook.com/groups/Behcets...

Here's a link to vasculitis Canada - you just missed a weekend event yesterday where there were presentations, but I'm sure there will be more. vasculitis.ca

I have found people here very supportive. Talking and knowing im not alone has helped a lot.

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Hi ColdNoodleSoup,

Thank you for your response, and for taking the time to direct me to resources closer to home. I am so thrilled to have even received two replies from my first venture into the online world for this journey of mine, that in-person interactions seem unfathomable.

I am really glad to hear that you have found this platform (and its people) to be supportive! I am hoping that once I am better able to cope with what is going on inside, that I might even one day be able to give back (even if its being able to send a reply to someone else's post).

I am definitely going to check out the links you've sent and join up where applicable. Many thanks.

Sending well wishes.

UK

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I forgot to mention another crucial piece of my treatment. After my first few flares, when diagnosis was still unconfirmed and I felt terrified, paralyzed, and unloveable, I went to see a psychologist. It was a massive help. I saw a Cognitive Behavioural Therapy (CBT) psychologist who specialized in chronic disease, and she was incredible.

Please consider finding a psychologist as important as finding a rheumatologist.

My insurance covered it, but there are some lower cost options if you have to pay out of pocket.

I'm sorry I forgot to mention this sooner. Therapy was amazing and I have no shame that I sought help. A chronic disease is a terrifying thing to undergo, especially when it is so rare and confusing.

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Hi ColdNoodleSoup,

Thank you for your words of wisdom. The day to day physical pain is overbearing. It outscreams (on most days) the effects that chronic pain is having on my mental health, happiness and sense of self. Your words "Please consider finding a psychologist as important as finding a rheumatologist" really hit me. Until your post, it did not even cross my mind that psychologists existed who specialise in chronic illnesses. Through some searching, I found that in my city, there is one clinical social worker/ therapist who meets that description. She herself, has lived with a chronic illness since the age of 15, I believe. I am really excited to reach out to her. A ray of sunshine in the storm. Thanks to you.

Sending well wishes.

UK

1 like
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I am so glad to have been of help. Wishing you all the best :)

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