Hi again, i also forgot to mention ive been getting very breathless with chest pain when i lie down. It gets better as i sit up. I had thought at first it might be heartburn, indigestion or acid reflex, or even the new meds.. I have just wondered if it is the weather (us brits love to blame everything on the weather!!!) However, its getting to me a bit, and my mother is always very worried.
Any replies again would be gratefully received! thank you all, and god bless you!x
I have the same thing, turns out I have an ulcer and barretts oesophasagus. I have to sleep with a few pillows that seems to help!
Ah! Will mention it to a doctor.. Whenever I get to see one.:/
I have breathlessness and chest pain all the time. I was admitted to hospital for observation before christmas and they mentioned 'pericarditis' and put me on a LOT of meds so I was spaced for the Christmas 
Meds didn't work though.
Still breathless and have chest pain but doctors won't listen. I've given up
Hi again sweetie,
With this additional problem along with your others, have you considered that you may not be covered by medical insurance when you travel ?
Unless you have stated all the problems you have on the declaration form then you will probably find you are not covered by the usual basic insurance policy and could well find yourself sick and admitted into hospital totally at your own cost.
Please check this point out if you continue to consider trying to travel at this time. okay hun ?
You may also need to be wary of the aircraft flight attendants picking up on the fact that you are saying you are not well and possibly refusing to allow you to fly anyway. Something else to consider perhaps ?
tootles sweetie xx
Hi xandii, i have talked to my doctors and they have told me to go, as if i dont go now, i probably wont ever go on holiday again. I plan to travel in 12 days, and have talked to my doctor about getting meds and letters sorted in the case of an emergency.
This disease has taken too much away from me already, and i have put my life on hold for too long. This holiday is going to be amazing, as i am going to be surrounded by family, god and lots and lots of sun, sand, sea and rest.
thanks for all your concern, but at the end of the day.. i need to try and carry on living.. or else is there really a point in fighting at all. If i give in now.. is there really a point in fighting at all? God will protect, guide and love me.. as he always has, does and will continue to.
Siobhan.
Siobhan my darling, I cannot commend your dedication to your religious beliefs highly enough and your trust that you will be saved should anything happen to you while away.
Please remember my dearest sweet lady that it is your same loving God that has probably given you these battles to face and quite possibly for some reason that we mere mortals do not understand. Your trust that you will be given guidance to get through these traumas that you now face has also lead you to talk with other who are afflicted with the same problems and ask for their advice. Please consider that maybe this is the way that you are learning how to deal with this burden you have to carry. Could the guidance you seek be what you are getting from the forum ?
I do not in any way wish to interfere with your belief ethics and I would encourage you to take advice from the people who you surround yourself with who have the same convictions as you do. However, when the different people you ask for advice come into conflict, you must choose which path to follow. If this is by way of continuing with your plans then I really hope you achieve what you intend to achieve in continuing along this route. However, if this is your intention then there is little point pursuing the other opinions that are being offered to you hun.
Only you can decide which is the most logical and sensible route versus the most attractive solution that is on offer and I wish you every success in deciding which path of advice to follow at the end of the day. I am very sure with your dedication to your beliefs that the right solution for you will be clear by the time you need to make your final decision.
Very best wishes sweetheart.
tootles hun xx 
Yes I have those too. Breathlessness, especially when I lie down, and sometimes chest pains. It seems to come when other symptoms, like mouth ulcers, are flared as well.
Good times huh? Lol.
Take care,
Kat
I think with Behcets one tends to get chest pain. I have had it at times, and have had tests done twice by concerned doctors. When it comes to lying down and standing up I think one tends to get chest pains with the changes in pressure, which is exacerbated by Behcets. One thing is for sure, if you have pain and are unsure, seek medical help immediately. I often get flutters and have been told that if there is accompanying pain or discomfort to go straight to the hospital. Best to be safe.
Also, one other point. What makes you think God is gender specific? Just asking, as I don't think he is!!!!!!!
Tim
I'm answering a few of you posts in one here - Firstly, please don’t ever apologise for posting.
You asked us what we think and we have given our opinions and suggestions. I would add: You have photophobia & skin blisters - how will your skin cope with the sun and heat?
You have constant diarrhoea, walking is very painful so you won’t be able to get to a loo very quickly. You have a chest infection, have difficulty swallowing, nosebleeds and headaches and currently can’t leave the house. Do you really think you would enjoy this holiday?
What’s more important? Risking your health or doing everything you can to improve it? What happens if you are offered an appointment while you are on holiday?
I am assuming the doctor who is treating your chest infection and recommended you wear a neck brace is the same one who rang the CofE in front of you last week and also the same one who you have talked to about getting letters about meds?
The CofE said you would be given an appointment date last week and you haven’t got it yet. Allowing for the bank holiday you ought to get it next week, but you can go to your doc tomorrow (I’m assuming you will need to see him to check up on the chest infection and to discuss and collect the letters anyway) and ask him to ring them again. You are in their system, so they will be able to give you the date and your doc could ask if they can see you sooner and ask for advice in the meantime. Their advice about whether you should travel will be advice worth heeding. If you are too ill to leave the house ask for a home visit – if you don’t get that particular problem sorted you won’t be going on holiday anyway.
I’m really confused about who you are seeing - who are these doctors that advised you to go on holiday because ‘it might be your last.’ Why? That’s a pretty extreme thing to say. From what you say I don’t think you have been assessed and given a treatment and management regime by BD experts, but appear to be seeing several different Doctors.
I’m still at a loss to understand the situation with the eye docs you saw. You seem to be getting medical advice from people who don’t understand what is wrong with you.
You say your Mother is worried; is she reading the opinions and suggestions offered to you on this forum? Perhaps you, your mum & boyfriend could read them together, it may open a discussion that helps you all, and perhaps they will accompany you to your appointments (if they don’t already) so you can further discuss what you are going to do.
I trust that God will allay your fears and guide your decision. As Xandii suggests, He may be guiding you to seek support and advice here. That guidance may also be to stay in this country and get yourself well, but only you know that and only you can make that decision. You still have 12 days - you could do a lot in that time – perhaps take on some of the suggestions you have been offered by forum members.
Of course you need to carry on living, we all do, but the point of fighting is surely to maximise your quality of life, to be as well as you can be and to look after your health with the correct support and treatment, from medics as well as God.
Hi.
By it being the last time to go On holiday, I meant when I can still see. I'm getting really fed up of people mentioning bad things about the holiday. I can either be sick at home... Or sick abroad(with medical insurance) all I will be doing is sleeping, eating drinking and having an ok time. I won't be drinking alcohol. The sun doesn't effect my rash, and my chest has been checked out every week. My mouth ulcers, genital ulcers, stomach, eyes and head won't be effected by a holiday.. And my chest only hurts when I lie down.
Just making it clear that I AM going on holiday. I've waited too long for this. I'd the CoE Comes back with an appointment during the holiday time, I will rearrange the holiday... But all of your replies have made me feel really low (probably all the meds). I won't be asking any more questions on this forum unless I'm extremely desperate.
You said a similar thing a few days ago. I for one am sad that you feel this way.
When someone asks for help, or appears in need of it - we offer our opinions/ask questions to find out more/make suggestions.
You don't have to go along with any of it, but as with every question, whether we are attempting to answer it or looking for answers ourselves, ultimately it is about support. The responses you have received are full of good intention and concern and hopefully you can see that everyone was trying to offer you the help you asked for.
My dearest Siobhan,
I want you to understand that we feel we are a very special family that none of us wanted to join and we take time and effort to comfort and help anyone of us that asks.
What is being said here by myself and Tigerfeet and the other contributors to this forum is purely out of concern for your welfare and we fear for your safety. Why else would we come forward and respond to your question hun?
Please don't feel that you should no longer ask for our advice but in the same vein hun, please take on board that we are very likely to tell you the truth as we see it and with all the best intentions of protecting you as well as we possibly can from the probably eventualities of making a decision that although looks from the outside to be extremely attractive to you may well damage your health long term. There has never been any intention to cause you distress in any way by anyone writing on here. okay ?
We appear to be coming in to conflict with your intentions hun and I guess we are just very wary of your tender age and fear of losing your sight completely and we are trying to protect you from making a wrong decision. As a group of fellow sufferers who, with the tests of time spent dealing with this condition, know the outcome that could materialise by travelling abroad, It would be so very wrong of us to NOT voice the fears we have for you wouldn't it ? I for one could not live with the guilt if you make the wrong decision and I have not made every effort to make you fully aware of the potential consequences of your choices.
You have asked for our opinions and with all the best intentions we have voiced our replies and our concerns for you. Only you can decide what course of action to take and if that is to continue with your plans then so be it. I for one, at least feel that I have made a considerable effort to assist you to make the decision that faces you in the knowledge that you are now fully aware of how our fears may materialise into reality.
I too would like to hear what your mother and boyfriends opinion of the whole situation is hun. I wish you joy and pleasure on your holiday with your family and hope that our fears for your safety are unfounded.
Take care sweetie,
tootles xx
I forgot to say hun, that you should not feel that you need to justify why you make the decisions you do to anyone on here. Just please acknowledge that you have listened to what we have said and taken on board our intentions of sharing ourtime served knowledge with you regardless if it is not what you really wanted to hear hun. Okay ?
Sorry to everyone for jumping off kilter. I entirely understand your kid intentions and fear my morphine makes me somewhat of a naggy moo! I entirely understand and would like to thank everyone. I'm just very scared and want two weeks to be a bit of a child again... As being sick for 3 years has a tendency to mature you beyond your years. (although my last sudden out burst doesn't show that) x
God bless you all, I will contact a doctor and discuss your views with him thoroughly to make sure I am not making a mistake x
Hi. I had terrible pain in my chest front and back. Was worse when I breathed in. It was pleurisy. Colchicine has controlled it very well.
hi siobhan
sorry to hear your in a big flare up but as xandi and tigerfeet have mentioned you have to listen to your body as i have first hand experience of taking my gps advice about going on holidays to majorca in april 2012 i had seen her for a couple of weeks before hand and i felt so bad i saw her the day before departure i felt dire with a big flare i was advised to go as it was felt it would be just what i needed was a week long relaxing holiday to cut a long story really short i flew out on thursday night and i was back home the next day i was so so sick i ended up in hospital for weeks and to top it off the holiday insurance would not cover any of it and the family holiday we had booked for july of the same year had to be scrapped as well and again no insurance paid out i really do hope that your holiday goes well but please do yourself a very big favour and make sure you feel well enough to travel if you have any doubts at all dont go i did go and it cost me big time never mind about the money side its the health side is the most important part,
if you choose to go i hope you get on well and for what its worth this community of ours will help encourage and advise all who ask for help to the best we can i have personally found it a real lifesaver good luck and god bless
kindest regards
chris.
REPORT ON FIRST INFUSION OF REMICADE (100mg INFUSION). HERE IS WHAT IT WAS LIKE.
Menstrual issues?
Pain Relief
