other than the painful ulcers and arthritis, i thankfully do not suffer from the uveitis common to most behcet’s patients… however i am plagued by a plethora of ‘minor’ problems associated with the autoimmune condition… there are many different types of other ‘minor’ symptoms also seen in certain behcet’s patients – but i have only done searches on those of which i am directly concerned with…
here are some other annoying stuff often linked to behcet’s which affect me…
headache
i started having severe migraine-like headaches at the age of 9 but these severe attacks receded slowly and disappeared… nowadays, i only get throbbing headaches which usually precede, accompany or follow bouts of vertigo… when i am under prolonged stress… as with everyone else, pollution, dehydration and sun exposure also lead to headaches but my switch seems far more easily flipped than others’…
links:
journal article - “The Prevalence of Headache in Behcet’s Syndrome” by D.Kidd (Oxford)
headache in behcet’s disease @ behcet’s syndrome society (UK)
vertigo
i hvae placed vertigo here although it is also often listed as one of the main classifications of behcet’s (see links below)… i am very prone to vertigo… it seems a family trait, which 4 out of 6 of members of the family suffer from in various degrees… sometimes, when under more severe stress, the vertigo causes short ‘fainting spells’… most of these incidents are preceded by a 30second or so ‘warning’ where the entire contents of my world stat to spin at an alarming rate and i feel short of breath, suddenly cold, and incredibly nauseous… the visual image is one of a rapid 3-dimensional spiral and i fall into a subconscious state when i ’see’ myself at the bottom of the spiral… 30 seconds is enough time for me to call a friend, i guess, but right now, i still don’t feel comfortable reaching out to anyone i know living nearby… so i usually crawl into bed pronto, pass out in the comfort of my own bed… i ‘wake up’ after about 5 to 10 minutes anyway… so it feels silly to call someone, have them rush over from far away only to find me grinning like a sheepish cheshire cat…
links:
vertigo in classification criteria for behcet’s @ behcet’s syndrome society (UK)
some effects of behcet’s @ behcet’s syndrome society (UK)
vertigo explained @ neurology channel
vertigo – Vicki’s story @ ABDA
nausea
i once had perpetual nausea for weeks and the doctor had me test for pregnancy… he was pretty alarmed, as pregnancy in my state of health can lead to even more trouble for me… nausea has been a constant feature in my life for as long as i can remember… not always severe, often easily managed with medication… or rest… and plenty of liquids… it can be triggered by anything… severe stress of course, but also light, smell, motion, visuals, pollutants in the air (renovation dust, air pollution, fumes from paint, vehicle exhaust etc) and even just being in a crowded place… i am not sure myself whether this is part of the autistism/asperger’s spectrum disorder, or behcet’s – or perhaps an unhappy combination of both, the former making me far more acutely sensitive and aware of my surroundings and the latter predisposing my physical body to the effects of this sensitivity? whichever the case, it is in my bag of life’s little ‘goodies’…
links:
nausea @ medlineplus
nausea @ mayoclinic
ear problems
no, mum, i am not imagining it! sometimes i get various forms of tinnitus, ringing, heartbeat-like throbbing sounds etc… more often, though, there is an inexplicable ‘hollow’ kind of blockage in the ear, as if air is trapped inside, similar to the sensation experienced in an airplane during changes in air pressure… but i suspect i also have a form of hyperacusis especially marked in my left ear – where sounds are magnified and certain frequencies become unbearable at different times / situations… for example, the sound of loud applause usually causes a sharp stabbing pain in my left ear, babies crying, children screaming, high-pitched / raucous laughter etc… i need to clamp my hands over my ears to alleviate the excruciating pain… even when alone in a quiet room, my left ear is extremely sensitive to sound and feels especially tender when i am tired…
links:
tinnitus @ dizziness-and-balance.com
hyperacusis @ dizziness-and-balance.com
fatigue
being in constant pain is extremely exhausting to the senses and taxing on the body to continue functioning… perhaps a bad habit i adopted when i was younger has also contributed to the fatigue i am faced with now – i used to pop painkillers (of course within prescribed dosage) and keep going at whatever strenuous energetic activity my frenetic life demanded of me then… yes i did manage to ‘live a normal life’, in fact, it was far above normal at times… but i am now paying for it in middle age – nowadays, the painkillers just suppress the pain enough so that fatigue can take over… i cannot sleep for long stretches of time, and i do not easily fall into deep sleep…
links:
fatigue @ medlineplus
fatigue @ the essential guide to behcet’s by joanne zeiss
I have been to 3 doctors. Two have already tested me for herpes. Which both cultures and a blood test came back negative. My gynecologist is now sending me to an Infectious disease Doctor. She also wants to test me again for herpes when I have another outbreak. One doctor did mention Behecet. However no one seems interested in testing for anything except herpes. I have only had 2 outbreaks with the vaginal sores, and both times it was accompanied with a throat infection which I tend to get frequently. I have been married for 8 years, and have 2 kids. I just don’t know where to go from here. Any suggestions?
hi lori, thx for dropping by. i m sorry tt u hv to face this plight. are u in the usa or uk? most doctor’s, especially in the west, dont know much abt behcet’s as it is more rare there… i was in nyc many years ago & had a bad outbreak of ulcers everywhere, the doc i saw insisted it was herpes – which made my then bf freaky… needless to say he became an ex bf shortly after this incident… anyway… there are some links in my post on behcet’s links, which can offer help to u, depending on where u are:
http://spunkykitty.wordpress.com/2008/08/17/more-about-behcets/
the american behcet’s disease association is a good source and so is the uk behcet’s society.
also, try the behcet’s groups as well.
try writing to them for a recommendation for a doctor in ur area to consult… ‘testing’ for behcet’s is a long process, so don’t lose hope and don’t be discouraged – you are worth all the effort!
hope i hv been of some little help… do keep in touch and let me know how u r doing – drop me updates here or message me privately if u wish.
all the best!!!
My advice would be to get as much info together as you can on the disease/syndrome and find a relevant consultant who knows of Behcet’s and get yourself referred to them, don’t waste any more time, life is too short. I asked the UK group and they sent me a list of UK consultants, I am sure if you are in America their group would help you. I have waited over 40 years for help from the medical profession and that is how I finally got to see someone who knew. Good luck , my thoughts are with you. A Behcet’s sufferer
I have recently had Behcet’s diagnosed, less the uveitis thank God. But the plethera of symptoms is mind boggling, amazing that so many little pains and problems in the my life are relating to one thing. I too have ulcers in mouth, private areas, have folicitis of the scalp and continuous problems keeping it all under control. The constant ringing in my ears is very disturbing and seems to be worse during a flare. Always thought back problems from young adult days was just an isolated thing, but it ties right in with Behcet’s. Headaches, skin anomolies, nausea, just too much to deal with. Taking anxiety medicine to help sleep, or else I would not be able to sleep. This is all new to me and I am over it all ready. I have dealt with so many outbreaks with no treatment, and me too treated and tested for Herpes. Actually have avoided sex with my husband each time I get ulcer thinking it could be Herpes. For 17 years now! He has never gotten herpes. I finally had my Gyno test my ulcers and confirmed these were not herpes! All these years, all the times I had to say no to protect him. This disease has had so much effect on my life and I am just getting informed. The more I do the more I am scared. This minor symptoms don’t concern me as much as what can happened vascularly. BTW- PULSING IN EAR means get to doctor! That could be a blockage and needs to be looked out!
thx for sharing ur experiences here. for me, it has been a 39 year journey – and having both behcet’s as well as asperger’s has been at best an unusual, colourful adventure, at worst a living hell… never a dull moment, but peace is also hard to find… always living in extremes… but i hv learnt that i must keep trying to savour the best of the extremes, they often help me thru the worst…
all best to us all – and strength for the journey ahead! pls do keep in touch!
hey there guys…i am 19 years old and i have been diagnosed with Behcet’s..for 3 years i have had excruciating in my feet,arms,ankles,wrists and legs..because i am not one to complain i ignore it for 3 years as well as genital ulcers.I was ashamed and embarrased. i just got engaged but its drepressing me so much.
I am a 2nd year student,studying Biodiversity and conservation biology and its hard focusing when u constantly feel fatigued and in pain..i am currently on steriods and will be for the rest of my life…plz respond with how the disease affencts u guys relationships as it just makes me VEY self conscious and less of a man..
hi saliegh, thx for dropping by. i m sorry to hear u r suffering all this pain. i hv had this since i was 5yrs old and i m now 44. yes it has affected my relationships plenty, mostly becos ppl dont usually understand anything that is unusual and complicated. but if ur fiancee really loves u, u shd sit down with her and explain things slowly. it will help u a lot if u can also give her some articles to read about behcet’s as well as tell her ur own experience of it and how it affects u physically and mentally. she needs to know how to care for u in the right ways that do not intrude upon ur personal space but yet remain supportive. i hv family who are very supportive, and my close friends too. as for intimacy, u can work around that during flare ups – i m sure ur fiancee will be fine and even very happy to be able to share something honestly with u and to know how much u value her support. u r not any less of a man, in fact the opposite, u r more of a man (or woman) if u r able and willing to be honest abt urself and accept the challenges that go with being different. i also hv asperger’s which makes it a double whammy, and it is so difficult, but it is all the more colourful and rich for the suffering, as long as we can be honest and find ppl who r willing to love us in honesty.
as for uni – i hv found it incredibly hard to cope with life in general as the fatigue is chronic due to the constant pain. i m back in uni myself, after a 20 year hiatus after my first degree. it is difficult. i hv had to apply for time off for medical reasons etc but my professors and staff are very understanding. reveal as much abt ur condition as u need to, but keep whatever details that u feel uncomfortable abt to urself and only among very close friends / family. u need to take everything really slow and easy, but work at a steady pace… it is horribly tough, but u will learn to listen to ur own body and it’s special rhythm so as not to stress it out and induce unnecessary flare ups.
as for my recent musings and grumblings, check out my other blog: http://hiddenwhispers.wordpress.com
wishing u all the best and pls do keep in touch, u r never really alone. feel free to share ur own thoughts in both my blogs!
Hello Spunkykitty.My real name is Saliegh…i have read ur blogs and thank u so much for responding to my previous blog. i was really in quite a depressed state..i guess the question everyonme asks is “why must this happen to me” and it was my turn to ask that question. My fianc’e is VERY supportive and she told me that me being this way doesnt bother her at all. she even told me she finds the scars of the ulcers sexy..not too sure bout that but apparently it makes me different.But yeah things seems all shiny apart fatigue and exhaustion always lingering with me. This weekend was stressful though because we had a huge family dinner,i want to know something….does Behcets make you feel cranky,irritable,emotional or short tempered.??i have experienced those feelings lately…but don’t know why.i was always in control of my anger and temper,but lately i feel i am losing control of it,because its starting to get the best of me.i always felt abit emotional but it was very random. I just do a lot of breathing..to calm my self when i get worked up,but its difficult.Thanks again soo much for the reponse..i am anxiously awaiting ur reponse
u can email me at 2829864@uwc.ac.za too,please keep in touch Spunkykitty.
Keep well…God bless you
Hey there buddy.I’m from South africa and no there is no support group. actually Behcets is very un common and nobody knows what its like..not even the doctors. I was mis diagnosed with granuloma but my illness was steriod responsive and granuloma is not suppose to be. Also granuloma is not suppose to be painful. I am doing well i think compared to last year.Winter is a nightmare for me as the cold weather combined with the rhumathoid artheritis makes my feet ICE COLD and pain becomes unbarable.To such an extent that i can no longer walk. But that is all gone now…..for now. As you know this blessing we have visits us anytime when u least expect it. I am at university at the moment..i spoke to my mother last night and i was reaaly emotional because she is struggling financially and her blood pressure is through the roof and she is really stressed so lately there has been alot of fighting and i spoke to my mother and told her i cannot cope with it..and asked her if she could just please try to be more calm and try to be a liitle more sensitive because i am frustrated already. so i am going to see someone that works in the psychology department at campus for counciling.just to get sum issues that affect me off my chest.i have to go now. I will read your poetry as soon as a can.
P.S: i am a Guitarist and write songs too..will send you some when i get the chance…mwah have a GRRREEEAAT Week!
Hey there buddy.I’m from South africa and no there is no support group. actually Behcets is very un common and nobody knows what its like..not even the doctors. I was mis diagnosed with granuloma but my illness was steriod responsive and granuloma is not suppose to be. Also granuloma is not suppose to be painful. I am doing well i think compared to last year.Winter is a nightmare for me as the cold weather combined with the rhumathoid artheritis makes my feet ICE COLD and pain becomes unbarable.To such an extent that i can no longer walk. But that is all gone now…..for now. As you know this blessing we have visits us anytime when u least expect it. I am at university at the moment..i spoke to my mother last night and i was reaaly emotional because she is struggling financially and her blood pressure is through the roof and she is really stressed so lately there has been alot of fighting and i spoke to my mother and told her i cannot cope with it..and asked her if she could just please try to be more calm and try to be a liitle more sensitive because i am frustrated already. so i am going to see someone that works in the psychology department at campus for counciling.just to get sum issues that affect me off my chest.i have to go now. I will read your poetry as soon as a can.
P.S: i am a Guitarist and write songs too..will send you some when i get the chance…mwah have a GRRREEEAAT Week!
hi saliegh,
good to hear from u. thanks for visiting my blogs. i m glad to be of some small support to those who r suffering like me. we’re all on a journey!
yes i do feel cranky, easily tired and very snappy – given the plethora of aches and pains we are constantly assaulted with, it is not difficult to see why! i’ve had behcet’s almost all my life – 39 years to be precise, it started at age 5. the pain is constantly there – even tho i hv got used to a certain level consciously (i.e. the few small ulcers that are always with me dont interfere with eating etc) still the subconscious mind is still registering the pain from my body, and that makes me very tired – battling chronic pain – and snappy… mood swings are common in behcet’s… do u hv a behcet’s support group where u live? i live in asia and support groups are not de rigeur here, but my family and close friends are very supportive so i get enough care and understanding…
ur girlfriend is very lovely – it helps a lot if u can learn to accept the acceptance from others… i find that i m my worst critique and that is no good when one is suffering a chronic illness… let go, relax inside, and accept the love and support from those who wish to give it at whatever level they wish to give… i m still learning here…
for physical relaxation and to keep urself fit, try to do light exercise – whatever ur body can take… it helps regulate the moods… but i cant always do that either becos i get arthritic attacks if i do too much exercise… even lifting a heavy weight for awhile may trigger swelling in that joint… as u can see from my hiddenwhispers blog i am still recovering from a severe knee flare up, it’s been months and months but still slightly swollen and tender, unable to resume my pilates knee exercises, can only do the upper body stuff and light knee work on my back… or swim slowwwwwly… pilates is good, if u do the light exercises… u can get a good dvd on this – but make sure u get it right with the breathing and stomach muscles (called the core) – i hv a personal trainer but it is getting a bit expensive now so i think i’ve learned enough just to do the mat exercises on my own… main thing is to take it easy on urself… stress of any kind can trigger an attack… sometimes i feel i m a delicate flower inside a glass bubble, yet i hv to be a tough desert plant !!! laughing is good too…
this is my email address – write to me whenever u wish ya?
cheers,
dawn
ps. i hv another blog but it has nothing to do with behcet’s or asperger’s, it’s just my poetry and musings: http://bunnyblu.wordpress.com
Hey there buddy.I’m from South africa and no there is no support group. actually Behcets is very un common and nobody knows what its like..not even the doctors. I was mis diagnosed with granuloma but my illness was steriod responsive and granuloma is not suppose to be. Also granuloma is not suppose to be painful. I am doing well i think compared to last year.Winter is a nightmare for me as the cold weather combined with the rhumathoid artheritis makes my feet ICE COLD and pain becomes unbarable.To such an extent that i can no longer walk. But that is all gone now…..for now. As you know this blessing we have visits us anytime when u least expect it. I am at university at the moment..i spoke to my mother last night and i was reaaly emotional because she is struggling financially and her blood pressure is through the roof and she is really stressed so lately there has been alot of fighting and i spoke to my mother and told her i cannot cope with it..and asked her if she could just please try to be more calm and try to be a liitle more sensitive because i am frustrated already. so i am going to see someone that works in the psychology department at campus for counciling.just to get sum issues that affect me off my chest.i have to go now. I will read your poetry as soon as a can..
P.S: i am a Guitarist and write songs too..will send you some when i get the chance…mwah have a GRRREEEAAT Week!