Unseen symtoms

I was finally diagnosed with Behcets a year ago. Treatment working, no more migraines, eyesight stable. I have recently just had a flare after doing so physical activity. Only half an hour for three days, enough to make me sweat a little. Didn't think I had overdone it. I was obviously mid-flare, as I had been feeling very tired, a bit down, overthinking things. It was after a couple of days of mild physical activity that I realised something was wrong. All the joints in my hands hurt, like knives being stuck into them. I also ached all over, and not the type of ache you would associate with aching muscles. I had no energy. This went on for a couple of days, until extreme tiredness overcame me. Slept for 24 hours and after I felt much better. Just taking paracetomol every so often and pain in hand has gone. I have reached the point now where, whilst I don't crave attention or sympathy, but no-one understands when I am having a flare and feel under the weather. At least with a migraine they could see I was ill. I feel I have to point out when I am feeling bad, when I have no energy or when I have no emotional energy to deal with situations. My self confidence has never been high anyway. I have had to give up a training business that I built from scratch. Stop doing physical activities that I enjoyed like jogging. I have gained weight from taking steroids, which means I don't feel comfortable going out much anymore. For one I don't feel nice in anything I wear, and whilst people - read women - don't say anything to me, I know there will be comments on the way I look when I have gone but also I used to like getting dressed up and going out, that was part of it for me. I don't see the point anymore. I feel it is affecting my marriage in many ways. I don't want to appear a victim and I don't talk about it to anyone really. It is different to being diagnosed with any well known condition, there is always someone to empathise. With behcets there is usually no-one else who has it let alone heard of it. If I do mention it, I then have the performance of trying to explain. The glazed look after a few minutes on their face just isn't worth it so I don't bother trying anymore. I am not after sympathy for myself, I am learning to live with it, but if anyone else feels the same - show this post to your loved ones if you can't find the words or it is too difficult to explain yourself, as I find.

13 Replies

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  • Believe me, been there got the Tshirt. I have suffered with BD for 32 years and it was about 7 years of terrible ulcers everywhere and fatigue and depression before the word Behcets was even mentioned. It was another 3 years before I saw somebody who knew of the disease and finally two years to get the diagnosis. Yes we all get terrible days, bad days and ok days. It's how you deal with it that counts. Be strong and positive, don't waste time trying to explain, just tell them you are not feeling well and sit with your close family and friends and tell them just how you feel, how they can help and tell them about BD. The Behcets Society who are responsible for this site, the Centres of Excellence and telephone help and vast research have made life much better than it was. Many consultants and even doctors now understand and accept Behcets patients suffering. There are far more meds and treatments available. If you go to the top of the page and tap the home page you will find much more information and you used to to able to get a small leaflet (which I carry everywhere with me) it's gives the symptoms of BD and there is space for you to put your details, meds, doctors etc. You could easily copy these and give to people for more understanding.

    I hope this helps

    Billi

  • Thanks for your reply. I have just sat hubby down and explained. But I also understand it is hard for him too. It isn't easy to read the signs. I will do as you suggest. Thank you x

  • You are welcome. Do not give up. I went on to have 2 more children and divorce and remarry. I also worked full time, then part time then as needed.

  • I can absolutely empithise with you - it is a shit of a disease. My best advice after 11 years of Behçet's is take it just one day at a time. I wake up each day and go with the flow. I work 4 days a week and this can require a huge effort at times. My Behçet's has been relentless. Have the usual ulcers, skin rashes, bilateral uveitis, fatigue, arthritis, gastrointestinal problems and even kidney failure. Have tried nearly all auto immune meds (none keeps my Behçet's under control) but currently on toxciluzimab infusions which initially makes me sick BUT have started to give improved blood results. YEH. Then I also remember there are people with symptoms far worse than me. I work with children with intellectual disabilities which I absolutely love for the past 25 years. It reminds me of how lucky I am and not complain to much. It really does help me to focus on what is important in life. Hope my story helps but remember you are not alone . ❤️ Helen

  • Not a lot of energy today and I have to work, but just wanted to say. I'm with you <3 x

  • I can empathise with you. I have only been diagnosed for 2 years and feel so frustrated that I can no longer do the things that I used to only a few years ago. I feel like my family also are limiting their lives as they don't like to carry on doing the things we used to do without me. All the guilt of this makes me feel even worse. I Have been off work sick for the past month with a flare and have just been given a note for another month and honestly don't know how much longer my employer will put up with it for but I can't afford to give up work at the minute so have to keep going. I'm currently on steroids to control the current flare but I am having trouble getting an appointment to see my specialist as there is a waiting list and my gp says he cannot prescribe immune suppressants or anything like that so I am playing a waiting game. I have also put on a lot of weight due to the steroids and inactivity as exercise makes me so tired after a few light sessions. I have gone from a size 14 to a size 20 in 2 years. I keep attending yoga classes when I can as the stretches help and the relaxation is great but doesn't do much for burning fat. I hope you have some good periods soon. This site is the only place we can all let off steam where people can understand. Keep updating us all on here and get the support you need from us. Best wishes x

  • Just a thought. I saw a rheumatologist and ophthalmologist pretty quickly. Not much a GP can do but refer you. Is there any chance you could push to be seen sooner? I was prescribed Azathioprine, and reduced the steroids. I have gone from 50mg daily to just 2mg now, and hope to be off the steroids completely by next month. The steady reduction was to allow the azathioprine to start to work which it has. I have lost some of the weight, but just getting up in the morning is a huge effort sometimes. Once I am up and about though I find I can do more than I could, not quite as much as I would like, but I rest when I need. If I push myself, then I suffer. It really is a catch 22, dammed if you do and if you don't. Keep well and keep in touch. x

  • Hi thanks for your reply. I have been seen previously but my next follow up appointment is delayed. I should have been seen in february but when i have called twice over the past month I have been told they are only just issuing January appointments. My gp has written a letter to try to speed things up but still nothing. I'm glad things are getting better for you though. All we can do is keep plodding on one day at a time x

  • Your only other option is private. You can drop in and out of the nhs and private. My hubby did this when he was diagnosed with cancer a few years ago. We felt the wait of 6 weeks to see a specialist was too long, so we paid and got seen the following week. It ok if you can afford it, I would have borrowed anyway because it was cancer, but its not right that they are making you wait so long. Keep us posted x

  • I keep thinking of the private option but can't really afford it at the moment. As you say something like cancer would warrant borrowing money but for something which isn't immediately life threatening which can be coped with like everyone on here does, I can't really justify it. Thanks for your support I'll definitely keep you posted x

  • Hi Sam0511 Are you a member of the Society? If not, please email us and I will send you a form if you would like to join info@behcetsdisease.org.uk We have little trifold leaflets that can help you to raise awareness and to help friends and family understand what you are going through. Don't give up trying to explain to people what it is like living with such a rare and complicated disease. A few simple phrases to start with - maybe tell them you have an auto immune, auto inflammatory disease that can and does in some cases, affect many of the different systems of the body. Email me and we can send some leaflets too. Hope things get better for you. All the very best. xx

  • Keep a food diary...

    It is tough getting up in the morning and aching all over , almost as exhausted as the night before.

    All mornings are not like that, thank goodness.

    Rest when needed, it takes time to get used to the new situation.

    Thinking about how you felt in the past will cause frustration.

    One day at a time, I really know what you are going through.

    It can get better.

  • Thanks for the reply. Appreciate it.

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