Behcets and VA: Hello, my name is Cody. Im 3... - Behçet's UK

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Behcets and VA

CodyR profile image
7 Replies

Hello, my name is Cody. Im 31 and I started having flare ups when I was 15. Of course no one knew what was going on with me and I actually didn't get a true diagnosis until I was 25. When i was younger my symptoms were considerably worse than now but I'm still having outbreaks about 4-6 months out of the year. The worst being mouth ulcers, extreme body and joint pain, really high fevers and eye issues. Also, I'm having a really hard time with depression and anxiety. I joined the Marines at 20 not knowing the extent of this disease. Needless to say I spent most of my time in and out of the hospital. I went to all kinds of specialist the 4 years I was in and still didn't have a diagnosis. I truly felt cursed and didn't think I could go on. Luckily,about 5 years ago I was on vacation and had an extreme flare up and was taken to the hospital where I spent 2 weeks but by the end of it I finally had a name for what I had been going through for 10 years. Since my biggest trigger is stress and fatigue it's safe to say the Marine corps wasn't the smartest choice. Luckily, my flares have been a little milder now and I have the knowledge to combat it better . I'm currently going through the disability process to hopefully take some of the financial burden away. If anyone has any advice for me on this or anything BD, I would appreciate it. Thanks. Stay blessed.

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CodyR profile image
CodyR
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7 Replies
belle623 profile image
belle623

Hi Cody

First, may I say thank you for your service. I am sorry for all suffering. You are very brave for forging ahead.

Have you noticed any nutritional triggers?

Work outs: as hard as this may be :) still work out every day, just at a more paced rate. TRX, slower, yoga, not so heavy when lifting. No tabhatas ;) watching your heart rate; those kinds of things.

Eyes: liquid gel purple label awesome for dryness, steroid drops for flare ups.

Sores: tea tree oil or over the counter steroid cream.

Keep in touch and hope this helps :)

Ash

CodyR profile image
CodyR in reply to belle623

Thanks for replying and for the great advice. I've been reading over a lot of the nutrition post you and others have wrote and I'm definitely slacking in this area. Luckily I've never been big on sweets so my sugar intake is pretty low. The only things I always keep away from are red sauce of any kind,tomatoes all together, and any spicy foods. These have both been triggers for me. Dairy makes my mucus production out of control so I'm careful with that and don't touch it during a flare. My weight is always up and down. Im 6"2 and range from 210-230 without a flare up and I've been down to 170 during one. I live in kentucky with lakes all around me so I love being outdoors and being active. I got to the gym at least 3 days a week too. Im bad about pushing it too far but working out is crucial for my depression and confidence. I have tried tea tree oil on my sore and it worked great. I break out on my arms and hands mostly. Very itchy and turn into open sores that tend to scar. Again, thank you for replying and all the support.

Kimco profile image
Kimco

Semperfi I also have Behcets, I too am in the VA system. Medically they do good by me. However my disease Is taking its toll on me as well. Diagnosed over 7 years ago. But it started in boot camp right after my first set of shots. Eye problems, then ulcers, then the joint pain. I am service connected for an injury in the line of duty but only 20%. I now have 23 doctors working with me. I would like for us to talk about the process on disability.

CodyR profile image
CodyR

Semper fi! I feel your pain on boot camp flare up. I had one too about two months into it. Luckily I didn't get dropped and was able to get back at it after 2 or 3 days. I definitely wasn't getting any sympathy from the drill instructors. I'm at 20% too but they are still working on my claim for BD. I went to the whole line up of specialist while I was in on two different bases. Camp Pendleton and Balboa. My dermatologist became my main doc and he was helpful but never figured it out. He had me come in and let rounds of docs look at me, the pics of my ulcers and ask me questions. I was hospitalized multiple times on and off base and eventually was put on limited duty until the end of Contract. My med record was thick with all kinds of documentation and pics, which the VA has. I got a letter yesterday asking for more proof from my docs here. Even after I have gave them two letters from my docs explaining what I have, the symptoms and how often I have to go in for shots. Besides getting shots when I flare up and taking steroid packs, I'm only on a multivitamin and some skin cream. I'm afraid they will look at it and not see the severity. I hurt my back when I was in,had plenty of documentation and have since been diagnosed with deteriorating disc, scoliosis, and sciatica. They denied me any compensation because I didn't "make a big deal of it" at my exit interview. Even after the doc THEY sent me to during my claim supported me in deserving compensation. So you can understand why I'm not too confident in them. I pray I'm wrong because I definitely need it and they will owe me back pay from last April. I've read that it's hard to get Behcets through because of the inconsistency of the flare ups. Did you claim this on yours? What was your process like?

rooser1 profile image
rooser1

Diet was the link for me. Cut all sugars. eat meat, fats and veggies. hell look into a ketogenic diet too. Not only did it combat all inflammation for me, but allowed me to add 10-20lbs per week on lifts (DL and squats)

Carb cycle with whole grains and beans if you need to with weight training. keep up on sleep. are you on colcrys?

29 f baltimore md here.

Jaxxi profile image
Jaxxi

Hi CodyR

As you react to tomatoes and spicy foods, I wonder if you are nightshade intolerant like me. Nightshade family foods include: tomatoes, potatoes, bell peppers, aubergines, chilli peppers, goji berries and tobacco. These give me immediate mouth swellings and burning pains in my neck and arms overnight. If I eat the smallest amount of chilli I get extreme night sweats. It's a tragedy because I adore all these foods! Solanum family contain a nerve toxin and I appear to be super sensitive to it.

BFalls profile image
BFalls

I’m rated 20% as well but the VA recently proposed that my rating be decreased to 0% because my “eczema” has improved.

Yeah.... I don’t have eczema. I would love to link up with any others going through the VA system. I’d be curious to know what diagnosis was linked to your Behcet’s and how you manage your care through the VA system.

Inbox me!! Looking forward to hearing from you all!

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