Newbie trying to find advice

[behcetswarrior]

Hi, I feel like I'm entering a world I'm not quite to grips with yet but please bare with me...

I recently turned 21 but have been diagnosed since 15 with BD. I started out as a child with mouth ulcers and fatigue which has since developed into genital ulcers, chronic diarrhoa (sorry I know thas gross but oh so real!) debilitating fatigue, back pain, joint pains, headaches and skin lesions along with the occasional forgetful moment so please excuse if I've missed anything out 🙈

I guess I just wanted to be involved with people who understand what I'm going through because as I'm sure you'll agree, the world isn't all to clued up on what its really like to live day by day with BD and how much it can affect you both physically and mentally.

My most recent problems seem to be with mobility. Backpain and joint pain, along with feeling very weak and fatigued have me considering on occasion if I should invest in a wheelchair? I'm not sure if that question sounds stupid to this group but I'm still quite young and have suffered so long I feelolder than my years 👵

Is there any advice you could throw my way? I appreciate people in my conditions opinions more than doctors these days

Also sorry if this sounded sporadic, I ppromise I'll get better ☺

[billi]

Hi and don't be sorry we are here with a shoulder to cry on or to laugh with you and to help when we can. What I am telling you is just the way I deal with BD and we are all different.

Firstly when I get the joint pains and limited mobility I fight it. I take my meds and do simple slow exercises to try to keep strength in my muscles. I reduce my work load.....dust won't kill me, I rest when I NEED to not just when I have to. It works for me and I have found over the years my symptoms are not as frequent and not as severe as at the onset of the disease over 30 years ago. I still managed to have two more children, and work at least part time. You must stay strong in your mind, be positive and push yourself to do things that seem impossible. Perhaps you could get some kind of walking aid, personally I don't think a wheelchair is the answer as you need to keep your muscles strong and supple the when the flare passes you will be able to cope. Ask you doctor about a pain management course for people with chronic pain, this really helped me and I wish I had known about it years ago.

You will get through these flares but you must also help yourself. Take care

Billi

[behcetswarrior in reply to billi]

Thank you for replying. I think I will ask about a pain management course as it can be awful. I do see my Prof in London but its once every 6 months or so and doctors up here in Newcastle don't really understand or know how to help if that makes any sense? They kind of rely on my Profs advice which can sometimes be too late. I had to leave my job as I was going through a major flare and it was affecting working life but it had to be done.

I will look into some kind of walking aid to help on my bad days too. Its sometimes hard to see the light at the end of the tunnel but you've just reminded me there is one. Thank you

[AmandaMoseley]

Hi Sweetie

There are quite a few people your age in the country - including one somewhere closeish to you - if you join the Society facebook group and ask I will try and connect you. Behcets is a lonely place to be - but you need never be alone

[2106]

Hi I know how you must be feeling, I had my first flare when I was 14. Huge genital ulcers which really frightened me. Nobody knew what they were so I just waited for the pain to go and got on with it. That was 40 years ago. I have always suffered terrible mouth ulcers, I use Forever Bright Aloe Vera Toothpaste, really good and is very soothing on the gums, give it a try you can get this on line about £5.50 a tube, worth every penny. I used to get about 25/30 ulcers in my mouth at anyone time but these seem to be under control. I also take Merc Sol 30c homeopathy tablets which are really good as well. For my genital ulcers when they are sore I have Trimovate Cream that I can rub on if needed. I also use this for my skin lesions. I put only natural lavender oil or coconut oil in my bath, use a natural shampoo and conditioner. The less chemicals that go in or out of your body the better. I also used to get IBS symptoms regularly, write down and keep a record of what you eat and drink this may help. I don't drink coffee, milk, chocolate and various other things. But saying that sometimes I try these things again and I find that everything is ok. I think a lot of it is a combination of things my system can not cope with which causes terrible tummy pain then the diarrhoea. Also in the last year I have suffered terrible back and bone pain, I was tested for vitamin D deficiency which my doctor didn't want to do but I insisted and the results showed that I was very deficient so am now on my second course of vitamin D. They will only test you every 6 months for this, I would have this done so that it can be eliminated. My pain disappeared within weeks of my first course and physically and mentally this made me feel so much better. Not saying that any of these things will work for you, but if you don't try you never know and most being all natural have no side effects. I do have flare ups and have had to have steroids but unless I really need them I don't. I still get very fatigued so I rest when I can, you must try and do this as it really will help. All the best xx

[belle623]

Welcome Behcetswarrior

And pls no need for appologies. We totally understand. I am so glad you reached out. Everyone is very supportive. Brene Brown says the most powerful statement is, "me too".

Funny you mention the age feeling; I know exactly how you feel. I am 33, but feel 90 most days lol. BD has effected my hearing and I had to get hearing aids and a wheel chair. But, I look at these items as my tools. My main goal is to participate in life. I do not use the chair all the time, however it allows to to be with my friends and family for long walks or if i spend all day in the city.

For the memory issue or foggy brain as my Rheum puts it lol. He had me come up with a mantra every time it happens. To remind my self that I am smart, I am not loosing my mind and most of all for me not to painic.

All of this boils down to building a tool box of sorts. Things that you can pull out and lean on when BD starts to take over. Most of all know you are not alone and you can always lean on us

Hugs

Ash

[behcetswarrior in reply to belle623]

This message was like a whole load of word hugs 🙈🙌❤ I appreciate each and every person who has replied so much.

Where you mentioned your chair I relate to this as there are some days I'm mentally and physically drained which means just taking it easy and then there are days my mind is ready to do things but my body won't cooperate; which is why I thought maybe ut may be a useful aid but wasn't sure if I was thinking too extreme although I do feel it may give me more freedom on my days I feel trapped inside my own body? This making sense at all? 🙈😂

[rooser1]

It will get better! I started with symptoms at 17 and had flares all through college with the worst one being a few years ago at 25. I remember the fatigue. It's insane. Rest as much as you can. Actual sleep, not watching TV or playing on phone. Keep a journal of foods that upset your stomach. For me it was all sugars (cookies cake ice cream, most fruits-even corn and carrots). I cut out all sugars and my bloating, gas, and diarrhea has all gone away. My energy increased. I started to have less ulcers. You must keep moving but again, rest when you need. I am now weight training and pulling 175lb deadlifts like its cake... You need to watch your stress. Get rid of obligations and unsupportive people. Start saying no to overdoing it. Pinpoint life stressors and eliminate them or start changing how they are handled. When I do get ulcers they are smaller and go away quicker now and I can pinpoint the day and stress trigger. I find one positive in every shitty or angry situation. I do deep breathing. I meditate at night. Now that's I'm physically able- I work out( took me years to be get here-be patient with yourself.)

There's excellent options for joint pain. Nabumetone helped me tremendously. Colchicine helps me with ulcers. I eat probiotics and a very clean and balanced diet. I do have the occasional chicken tenders and fries- life isn't terribly strict once you get your BD In check. Be patient- you will have good days and bad days but over time you'll look back and go wow! I made it through that!

Feel free to check my other posts for dietary advice. Honestly, changing my diet and getting all the sleep in the world is what pulled me out from my worst flare and has kept me healthy.

GOOD LUCK!

[behcetswarrior in reply to rooser1]

Thank you! I will definitely check your other posts out!

I already feel a weight has been lifted speaking to people who understand the weight of it all ❤

[rooser1 in reply to behcetswarrior]

I forgot to mention- ironically haha. The forgetfulness will just be there IMO. I combat this by having a regimen and keeping things in the same place. I do double checks and verbally state things out loud "I took my medicine at 730." I have a notebook for meals for the week and weekly tasks. Less to struggle with with remembering. When all that fails-find yourself a partner with a steel trap memory haha! My guy remembers everything. I'll tell him the same stories over and over and he'll tell me he's heard it but still listen. It can be really frustrating not remembering things but whatever- just be honest and upfront about it and the embarrassment goes away. Just think- when people tell you things it's like brand new sometimes and exciting haha!

[Chloe08]

Hey! Sorry for the late/slow reply, I've only just seen this post but thought I should comment as I am 22 and although my behcets doesnt seem to be quite so bad it does get me down because you feel like you should be able to do more at our age, it really does suck but if you ever want to chat about that or just normal things feel free to message me xx