Constantly feeling unwell from Behcet's

Hi everyone,

I probably already know what most of your answers will be, but I'm going to ask anyways. I have been in a bad flare now for the past 4 years, was just diagnosed last year, but I've actually been unwell since I was 16 (I'm now 25). Basically for the past 4 yrs I have felt sickly all the time-- day after day. It is a general unwell feeling-- what the docs call "malaise"-- and no matter what I try to do, I just can't seem to feel better. I mean, I do have better days, but for the most part, I don't feel very good-- almost as though I always have a flu virus or something. There have been many times that I was worried it was depression, but I think that was just me giving into what many of the doctors were saying. Plus I'm already on Trazadone at bedtime to help me sleep. I am just wondering if this is something that many others constantly struggle with? I am currently getting 800mcg Remicade infusions every 6 wks and, am on colchicine, azathiprine, and low-dose steroids as needed.

23 Replies

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  • Oh darling, do I empathise with this one! I think it's something quite a few of us feel but, of course,I can only speak for myself.

    I was so concerned about feeling constantly unwell that I challenged my consultant with the diagnosis. I told him I couldn't possibly have BD because that is a disease of flares and I don't have flares, I have constant illness. He reassured me that the diagnosis was definite and that the disease had spiralled out of control because it hadn't been managed properly. And, to give him his due,I had gone two years without a consultation because my previous consultant was off and there was nobody to cover for him. (So I changed consultants to one at my local hospital rather than 2 and a half hours away).

    We are still trying to get it back under control - I know it can be done because for a couple of years it was very well controlled indeed.

    But something has become very clear to me over the past six months or so. On Mondays to Wednesdays each week I am very poorly indeed, spending most of my time in bed and asleep. For the past 5 years or so I have taken 20mg of methotrexate every Sunday evening but it never occurred to me to link the two things. How stupid is that. So one week I didn't take the mxt and, lo and behold, I was much better Monday-Wednesday! So, it is not out of the question that some of the way you are feeling is down to one or more of your medications.

    You mention colchicine. If you are not taking it in divided doses - i.e. split the dose between morning and evening, that is something you might discuss with your doctor. I have always taken mine morning and night and I'm on maximum dose. I have never had a problem with them.

    My best advice to you is to speak to your GP (unless you have a hospital appointment coming up soon), tell him how you are feeling and ask if this could possibly be side effects of some of your medications. Take a complete list of your medications with you and a bullet point list of your symptoms. No flowery words, just lists. Then you have done half of his work for him. He just has to think about it!

    It might just be that you haven't yet found the right drug cocktail for you - it can be a long old search, but having spent two wonderful years fully controlled, I can promise you that there is almost certainly a solution out there for you.

    We are detectives ;-)

  • Di has made some very important points there.

    My response is around making some assumptions, forgive me if they do not apply to you, but it's easier than a prolonged question and answer thread :)

    Have you ever had a medication, treatment and lifestyle review? Awareness of what you feel and when you feel it, the sort of things you do, ratio of rest to activity, what you eat, when and how you take your meds - lots of things can contribute to how you feel overall.

    If there are certain days or times when you feel particularly bad you can work with that.

    As for depression - it's not surprising if you DO have it and at the very least feeling down/low/tearful is not at all unusual. Sometimes anti-depressant type meds are given to help with long term slow release pain relief and sleep, but are not at a dose which would help with depression.

    I am a strong believer in looking after your mental health as much as you do your physical health and learning how to do that might help you to manage a little better too.

    We are all a collection of symptoms and experiences, it's difficult to unravel them, but looking at each one and how it fits in with the others, getting an overall picture, can help towards better coping strategies and management.

  • Nice!

    And, if it helps anybody else - I take anti-depressants at therapeutic level. I fought against it for many years then I came to terms with the fact that I need them to keep 'normal.' If that's the way it is, well, that's the way it is. My father was a depressive, as was his father.

  • Me too, have taken them for a long time! My father also suffered from depression!

  • So many similarities!

  • It's ever so draining when you are constantly feeling unwell, and it does drag you down -especially when you are only 25 and not able to do the things all your friends are doing. I really understand how you must feel :-(

    I've always assumed that this is part of the overall picture of BD - it is for me anyway...

    Sending you lots of hugs.

    Klaris x

  • I too suffer from exhaustion constantly but have had periods of remission, they can be achieved so keep hopeful.

    I know exactly what it feels like to be 25 and not be able to do what everyone else around you is doing. My advice would be don't shut yourself away too much. I with drew from the world too much at that age as I found it difficult to be around my friends whilst I was sick. I've now resigned myself to the fact that that is part of me and my friends have always been happy to accept me that way.

    I now go out and enjoy life as much as my body allows, even if I can't drink and have to leave early. I found that reconnecting with the world really helped my moods and made the exhaustion easier to deal with. It is depressing having to nap every day, but now I have made that part of my routine it is more bearable.

    Hope this doesn't sound too preachy and I wish you luck in finding your way to a period of remission.

    Nicola

  • Hey hun im 27 so not 25. But like u iv always had sumthyn wrong since I was a kid with pnuemonia.

    It wud come n go two wks with this symptom mayb a gud month folkowed by another two wks. Had constant ibd since I was about 8 poss earlier but cnt really rem tht far back to correctly comment.

    Thts always been my normal. I kept active- exercise yoga dance etc etc. Worked hard despite it all- own business and also hav three young kids.

    In June last yr I cm down with the usual flu like symptoms n mouth ulcers (which I didnt think wer even connected) and the next day was in a wheelchair due to the arthritis. Iv not had a good/normal day since. Started pred in Sept and by Nov I dropped the wheelchair and now use a stick. My youngest is 2 n I hate most nt bein able to kneel down n play with him. But at least now I cn pick him up n hug him wen im sat down. June-Nov I had to preactically watch others do everythn. Now I hv more of a role in things again.

    Iv lost a lot of my friends as they just dnt understand at all n get arsey wem ya always turning things down, but iv discovered just how amazing sone of my friends are and hv met sum new ones along the way too.

    At first I became a hermit but recently iv started gettn bk out there nothing too exciting jus the pics, mayb a lunch with mum, or Dave my partner. N it mks all the difference! Iv also thrown myself into home study courses and crafts for on the dsys when my arthritis isnt distributing the wrath of hell on me.

    Today im doubled over wit severe ibd symptoms n im meant to b goin Amsterdam with the other hlf in the morning lol! Typical. Had no sleep last night and cnt bring myself to move at all!

    Xx

  • Guess my point is to not think ur alone, use these groups as much as poss, I kno it may sound bad but it does help known others r goin thru d same. Try n. N occupy ur mind wer u can gun whether dvds or reading. A degree is gud too! Work at own pace and wen they do hopefully sort r meds out we cn walk into fab jobs! X

  • Thank you so very much everyone!

    I think what I needed was to hear confirmation from you guys that this is a "normal" part of being sick with a chronic illness, especially the wonderfully enjoyable one that we've been struck with. Everything that you all have said makes complete sense--

    I too believe that health and well-being are much more than just our physical being-- I have to remember that my life has not ended just because I have this disease. Right now, it often feels that way because things are not getting under control. But my rheumatologist (who I know is trying his best to make me feel better) warned us right at the time of diagnosis that it will take a good while to sort things out and that he can't just prescribe me some pills and the next day I'll wake up all better.

    It's just tough because I feel like my life is being "wasted" away-- I was in my second year of nursing school and absolutely loving it and enjoying life (despite the fact that I suffered from a lot of non-specific symptoms and fatigue) and then bang! My body just became too weakened and my immune system too strong-- and the Behcet's took over my body. I want nothing more than to be able to get back to my schooling, even if its just one course at a time, but the thing is when you are sick like this and things are so unpredictable, its kind of not a good idea. I've already gotten myself in trouble by nearly failing a couple of courses because I was so sick and in and out of the hospital, and then I had to take some incompletes, voluntary withdrawals, and then had to give up my spot in the nursing faculty. So when I do get back to it, I have to take nursing at the community college because I have lost my chance at the university. I guess I just focus on the negative of it all too much and then start feeling too sorry for myself. I should be grateful that I do still have an option.

    My family GP kind of brought all this to a hault a couple weeks ago when he basically told me to get over myself, learn to re-adjust my life to having this illness, move-on from it, and get a "cushiony" career where I only have to use my brains and not any physical labour on my body. He even said "at least you are lucky... at least you aren't 25 with 3 kids and a no-good boyfriend and are forced to work a crappy job to feed your kids... you still have options." This made me so angry and upset! I kind of understand what he was meaning, but at the same time, what he said hurt. I mean, what part of having Behcet's disease makes us lucky? Don't get me wrong, I try my best to look at the positives and I also believe that God has given me this illness and pain for a reason. But I still feel like what he said to me was all wrong. There was another time he told me "well you know what.. this isn't all that bad because I've seen young twenty-something year olds that are fine one day, diagnosed with cancer, and then dead within a couple of months." I think doctors really need to learn some empathy-- if only they could have to take a mandatory experience early on in their training where they are sick, in pain, and very scared and overwhelmed for just even one day-- then maybe they would be a bit more caring and understanding. Anyways, now I am just blabbing on Lol.. sorry!

    I have to thank you all again though for helping me feel a bit more positive and hopeful. Sometimes thats what we need is to just have someone help us see things a bit differently :)

  • I just want to say that if your GP talks to you that way it is well out of order. Telling you about the person with cancer sounds downright unethical. A complaint or change of GP might help you to cope with all aspects of BD cos if you can't get appropriate support on the frontline then I'm not surprised you have been feeling like you do. Well done for trawling your way through the minefield and finding the strength to begin feeling more positive and hopeful.

  • Thanks, I hope that you feel better as well :)

    I am sorry that this hit home for you-- I can only imagine what he would've said to you. I usually come out of there feeling so overwhelmingly angry and unsupported-- only problem is that he is the one who gives me all my meds I need to get through my day. Unfortunately, I can't see any other doctor for pain management because he is the one who started it. The only way is if I get a new prescription from the hospital or emergency department. No other family GP will take me on now because I'm on pain management and they also get scared off from the Behcet's. I try my best not to listen to his stupid comments because he has absolutely no idea what I go through everyday-- actually, I think he has absolutely no idea what it is like to go through a rough time at all-- he acts like his life has been perfect since the day he was born and somehow thinks he's in a position to throw out garbage advice that belittles his patients. It seems like the only problem that's worth his empathy (actually, it would just be sympathy) is if it kills you in the end. GRRRRrrr... Now I'm actually starting to get angry thinking about, so I should stop.. its not worth making myself sick over. Take care, sarah :)

  • Dear Lizzy,

    I am so sorry you weren't feeling too good yesterday. I hope that you woke up today feeling much better or at least some relief! Were you able to go on your trip today? I hope so :)

  • Sounds like you have a very unsupportive GP! I wish they would take a moment to think how they would have felt if they had been unable to complete their training due to ill health. There is always someone worse off than you no matter what problems you have, but that doesn't mean your difficulties are worth any less sympathy!

    Never doubt or blame yourself for this illness. None of us would choose tofeel like this and until you've walked a day in another persons shoes it is not fair to dismiss their problems. We are all sympathetic with you so don't forget that!

    Nicola

  • Dear BHBW (you have such a long user name!),

    You ARE a special person. You are your parents beloved daughter, and a strong and capable young lady.

    Your GP should be shot for talking to you in such a way. How can he know how you are feeling? It is not your fault you have been burdened by a complicated, painful and sometimes embarrassing condition. It is hardly surprising you are feeling a tad depressed.

    Please don't think that God has given you this illness for a reason. I used to think the same, but a close friend said that if the Almighty had done so, it was because He knew I could bear it.

    This is the time you need the help of friends and family. Try to normalise yourself slowly, and perhaps a night out with the girls would not be a bad things soon when you are feeling a bit stronger. Just as long as they realise you will be leaving earlier than the others, and cannot drink as many vodka and tonics as them. I have gin-less G&Ts when ever I am out. Nobody knows except for me)!!

    DI and Tigerfeet have written some superb replies, as have the others.

    Blessings and very best wishes, Suzanne xx

  • Bless you, I can relate to how you have been feeling Hun. It took docs about 4 years to diagnose me and like you day after day was a constant battle. Some days I couldn't even get out of bed as I felt so ill. I was diagnosed last year and have had a few blips along the way. At present Colchicine, Azathioprine, Stemital, Amatryptaline, Tramadol, Paramax and sumitrapan have kept symptoms at bay. I am on daily Colchicine, Aza and Amatryptaline and take the other drugs as needed. I also have periodic steroid injections if things get really bad. More recently I have been on Fluoxatine as was at a real low. Living with BD can be a real struggle at times.

    It is a brand new year and my resolution is the stay positive. So far with the help of Fluoxitine I am managing to keep it.

    Good luck Hun. C x x

  • Thanks so much Cg! Sometimes it helps change my perspective of things when I hear from other Behcet's sufferers that I am not alone in what I am going through and feeling. It deeply hurts me inside and tears at my heart to know that others, like yourself, actually do feel the same (or very similar at least) pain and anguish as me-- but at least we can all come together at a place like this to help carry each other through our ongoing Behcet's battles.

    God bless you, and keep up your good attitude :) We may not have any control over our bodies and disease, but we can have complete control over the way we think and feel about our situations. I will keep you in my prayers for good health both physically and emotionally.

    Jenna

  • Hi BHBW ( I am with Suen Mike),

    Try and get a copy of the very old movie "The Doctor" with William Hurt. It is based on a true story and needs a full tissue box. I got my father and husband to watch it as they are both docs and they were very moved. Maybe suggest it to your GP but he sounds so awful he wouldn't lower himself to watch it.

    Hopefully it might make you feel better ( after you get over the tears)

    Felicity

  • Hi Felicity-- I hope that thid finds you feeling well :)

    Haha I know my username is a tad too long, it exhausts me just typing it in to sign in-- but I thought it was very fitting and true.

    I haven`t heard of this movie, but I will search for it. I am always up for a good tearful movie. I have to agree with you though-- my GP stands way too high on his invisible throne to take any advice from me. I try to look at it as, people like that haven`t been dealt similar cards as us because they would never, ever be able to handle such a life-changing disease.

    Take Care :)

    -Jenna

  • Thanks Jenna,

    I think that is so true. My husband is a newborn intensive care doctor and he agrees with you so much. He first noticed this in himself when after having our first baby he felt so differently when families brought their crying baby into emergency not knowing what to do next. I also know in my work as a physio I never understood tiredness like we get it, I always thought get moving and you will feel better. We need more of the health care system to be touched in some way by illness to show empathy.

    Felicity

  • I've always thought that it would be great to be able to pass my illness and symptoms to people for just one day ( I wouldn't wish it on anybody for longer than that) and then they could get a sense of how it feels to live like this all the time. Although even that would not be enough as part of the problem is the desperation you feel waking up every day like this and never getting a real break, it wears you down.

    So many people assume their isn't much wrong with me as there is nothing much in the way of visible symptoms (I am lucky in that I don't suffer from skin problems and I don't often go round showing people mouth and vaginal ulcers!). I don't mind this from lay people, but when a doctor behaves like that it is very hard to stomach. We also place so much faith in the medical profession that we tend to take what they day to heart (or I know I do) which can be a very negative experience when they are dismissive towards you.

    Nicola

  • Hey sorry for late reply. I did n it was nice but split with the bf it was the make it or break it, he seems to like me being disabled, hiding me away from rest of world etc etc, so I hsd to end it. Bit nervous, all iv ever wanted is to settle down for life n iv justended a relaguinship with sum1 who wanted me regardless of the three kids n BD.

    But I nd to focus on my health n my kiddies. Its a nightmare feeling sick all the time.

    Im back in hosp atm, collapsed late thurs eve (thankfully wasnt my kids tht found me and non of them disturbed) n mum rushed me to hosp wen she got in from work n dad waa there to b in house with kids. I had lumber puncture yest to removr pressure off brain. The procedure itself didnt hurt however im a tad sensitive spinewise now lol n cudnt sleep v well last night due to it.

    Hope your feekibg better!

    My aza waa upped to 200mg a day last tuesand iv been much motr movile wirh a lot of relief pain wise.

    Xx

  • Oh recent tests also diagnosed the ulcerated colitis so explains being doubled over etc and in pain with bowels a lot.

    Amsterdam was good however we went on a two hr canal trip and Dave spent the entire time sat on his bill surrounded my loved up couples while I was locked in the only toilet hvn a BD colitis experience. It stank. N I was literally exploading gripping the sides of the boat trying not to scream with pain n everytime the boat turned the propellas threw the erm waste back up the bog so id hv to dive up (as quickly as one can with BD) n the space xbetaeen door n toilet wasnt evn big enough for my feet sideways was awful lol!!

    But funny now I look back at it. When I left the loo everyone was staring at me in shock lol.

    X

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