I just wanted to share my story with someone..(sorry for my bad english, I hope you can understand me) nobody here realy care, when i told a couple of my closest family I got APS/hughes, they just said stuff like: It's not that bad or you should meditate, it can heal you. so I stopped telling people, after that response, i dont want enymore people to know..
and I feel sooo alone. I'm 21, and I have been sick for 6 years before they diagnosed med with something. I'm in pain all the time. its always something, if my headache is gone one day, the ofcorse i get joint pain. I don't even know if thats related to APS, becuse my doctor doesn't give me eny info. I can only see him every 3 months, cus they dont have rheumatologist in the county/region where i live. I'm always in pain.. sometimes it feels like my bones is getting consumed by acid. and i just wanna cry.. I have been sick for so long I dont even remenber how it feels to be healthy.. I dont know what to do.I dont know enybody with APS. I don't even know if I have the right diagnosis. the doctor say i have the antibdies, but i cant find much about pain related to APS. and it is the pain that if worst. the fatigue and dizziness cant even compare to how much i hate the pain. I wish i didn't feel so tierd allt he time, but i would much more want to be with out the pain..
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I'm sorry for what you're going through. I understand how you feel and your frustration. I don't have a lot to offer, besides my understanding. I hope you find the knowledge and help you're looking for. Take care and if you ever want to talk I'm only a click away.
I'm from Norway, you would think norway had a great health program since we are so rich. but it seems Sweden is better in evey way. My uncle lives in sweeden with his family, He have been liveing there since he was old enought to move away from here. lately I've been thinking about moveing to sweden or england to. I live all up in the north of norway, and I would love to live somewhere warmer
It would probably be very god for you ti see him,. I hope he can help you
I'm from Norway. my new doctor, he is french. his name is Emilio something, I can understand hes writing. he talks very fast, so Its hard for me to follow what he is saying. but he is very kind he is one of the 2 doctors that seems to care about finding out whast wrong with me
Hi! I don't know if I can help you, but could you tell me where in Norway you are from? I am Norwegian too, 37 years of age and have had the diagnosis for 12 years. Maybe I could offer you some advice or at least share some thoughts? I know that having this diagnosis that no one seems to know can be tough... Hilsen en jente på østlandet.
Jeg bor i Finnmark. det er ingen revmatologer her, så får bare sett en hver tredje måned som kommer fra tromsø. hvor ofte har du muligheten til å se en revmatolog? er det vanlig å måtte vente et år fra man blir henvist til revmatolog til man får time, å å måtte vente 3 mnd mellom hvert besøk?
I really feel for you,and i wish i could give you a big hug, i can only send you one via the web - so im sending one. Auto immune conditions are very poorly understood,so a seperate battle goes on for people to be accepted as having a condition like hughes-alongside the ongoing battle we have with our health, and unfortunately that doesnt help us at all, it only makes it even worse. Maybe you could print off information from this site and give it to people to read and maybe that would help them to see. A lot of the time people are just scared of what they dont know,and maybe they dont know how to help so its easier just to ignore it,or pretend it isnt happening at all. I found this site amazing,both on my road to diagnosis,and coming to terms with it afterwards-nobody will ever understand outside of this site,so post as much as you need,and let us know on days you are struggling-we are certainly not a doom and gloom depressing sort of site,but we are sympathetic and understanding,and there is a lot of people willing to kick you up the bum and get you moving on down days,but plenty of people to listen if you need us to. I wish you the best,and were always here xxxxx
thanks I really needed a hug. now I'm off to work. running around for 7 hours after a night of much pain and no sleep. and this post you people have sent me here is what is gonna get me through it. so thank you
I am 36, just diagnosed with APS and another AI syndrome called Behcets. I have been having pain and sickness episodes since about 19/20 years old. In the beginning I had much bone pain. It was very difficult because I had a very active job. They did bone tests but my bones seemed fine. APS and Behcets have overlapping symptoms like lupus so it will be hard for me and the Dr. To know what's what. Has your doctor also checked your ANA? Have you had an opthamology appointment to dilate your eyes and exam behind the eyes?
I dont know about the ANA.my doctor doesn't tell me much, he just say: we are gonna run some more tests.. everytime I'm there. and I have not had my eyes examend.
I also have a very active job, but I would like to study more when I have saved up moey for it.
I have APS too - I live in Denmark, and it was a norwegian rheumatologist WHO found the diagnosis. His name is Hans Jakob Haga - you might try to write him an email (he has his Clinic in Esbjerg). Lots of thougths Annegrethe
Sorry you feel so terrible. You must talk to your doctor and ask for copies of all your tests. You have the wright to have that.
I only know one person here in Sweden with this illness and that is Tessan that has already written to you. This illness is not known in Sweden. A shame really. So many of us have felt like hypochondriacs. It has taken a lot of years to have a diagnose. You can feel a little optimistic if you have got a diagnose. That is really important to be taken seriously by the doctors. And to find an APS-doctor (most dr in Sweden do not know about this condition). It is a condition that can affect all parts of the body.
This dr with the french name (Emilio) sounds like he is willing to help you.You are not alone any more.......
my reumatologist emilio said sometime when you talk to regular doctors you should say you got lupus, becus they dont take APS serious, since most of them have never heard of it. but if you say you have lupus you'll get help faster from them. i mostly have to talk to the regular doctors since, emilio only visit heere north once every 3 months.. I'm lking forward to march when he comes here again.
Hi New - Jet here from the States - N.H. You really need to get the info available on this site - understand it [ plenty of help here ] and take it to the Dc's or some one in the medical end and insist they listen . we sludge bloods need to take the battle to them you need to be your own best advocate. I understand as we all do here. Keep in touch { don't worry about your English { I myself make a mess of it } stay strong - wish you well------------ here for you -----jet
It took a very long time for my diagnosis of Hughes Syndrome (22years). I was wrongly diagnosed and treated for other conditions. I know how awful you must feel, the pain and lack of understanding really gets you down. Keep fighting and gathering as much information you can about this condition (I know it's hard when you feel so unwell). Once you get the right treatment it doesn't offer a cure but does help reduce the symptoms and pain. After ready an article on 'Sticky Blood' (thank you Mary!), I knew that was what I had. My GP tried to dismiss it and didn't believe me but I insisted on being referred to London Bridge Hospital. After seeing Prof Hughes and Prof Khamashta I now have a great Doctor at Ninewells Hospital in Scotland that understands Hughes Syndrome. I wish you the strength to fight this and really hope you are given the correct treatment,
I was first diagnosed with depression, they thought there where only somethins mentaly wrong with me, I don't think they belived i was in pain. then they said I had gout r arthrites or something like that. and when they sent me to the reumatologist, he said after our first apointment, that he thought i had something else. I belived it was hughes. but it has taken meny years, every since I got pregnant with my child t 15. I har a very hard pregnancy, and no one thought it was enything ther then the normal. they thought I was just complaining over nothing. but I knew it was something wrong all along. from my doctor was gonna send me to the reumatologist to i actually got an apointment it took a year. I hope I will get some treatment soon
what kind of medication can relieve joint pain and headace? and is there something for the fatigue? I have very much trouble sleeping. have had that ever since the pregnancy. only time i slept well was the first 8 mounths I was breastfeeding my child. but when I started school again I only breastfed her half the time. so I started getting the insomnia back. I feel very tired, even the night I sleep well. It's like sleep doesn't help. so its almost the same If i sleep a night or If i dont. the sleeping pills doctors has perscribed only works for a little while. so I have stopped takeing them, and haven't bothered asking for eny others. after trying 4 different types.
I now take Warfarin with an INR range of 3.5-4.5. This has made a huge difference to my headaches and joint/nerve pain. Finding a specialist is the difficult part of getting this condition diagnosed and recognised. Hopefully you will find someone recommended by the HSF in your area, x
It is crazy that I really think it's both. My symptoms go back further for Behcets than APS. I have been having periods of illness now for about 17 years (aside from random instances as an adolescent), and only this year am I at the point of diagnosis for anything. I have just learned to live the way I am and by anti-inflammatory diet, simple regimens, over the counter for arthralgias and rest when absolutely needed... I have been able to manage. This past 16 months things have been escalating and I have had a couple times where I needed Prednisone and Corticosteroid topical when needed. I have also this year needed Prednisone eye drops for a period. So my new rheumatologist (only seen her once so far), has me setup to see her Hematologist and her Opthamologist in the upcoming weeks to determine if they can figure out where the beginning stage eye damage I have is coming from; if so, then that will be the condition that is treated for the most part. It almost seems that one of these conditions is primary and the other flares or creates other complications. This new doctor is very good and the only one in this are known for Behcets (Chicago area). Earlier this year my dermatologist biopsied a lesion and it was indicative Behcets small vessel vascular. So right now just on baby aspirin and Behcet drugs on hand for if things get out of control. I see the Hem. this week to see what she thinks.
You must fight this illness!! Start to ask for copies from your dr that has taken antibodies. Then you must get a doctor that knows APS! You must have a diagnose which I am not sure you have got yet. Have you got somefriend that can help you
I got some papers with a diagnosis, where i stood that I got SLE or something like that. but he put me on aspirin and said a got hughes. so I'm a little confused. but I hope its getting clearer when i see him again in march.
Interested to read the comment about having a problem or pain in one part of the body for a while and then it moves to somewhere else's this is my experience too. Time frame is weeks or longer.
I can go one dy with extreme pain in my bones, then the next day I can have a throbbing headache. I allways have a headace but most days it is not that bad so I doesn't notice it as much, sice I'mused to it. but other days it can be so bad that its pulsating all the way down my neck.
I have written on your "message" in Swedish but I do not Think you can write in your language here on the site.
I understand you live high up in the north. We can write on the message and I can try to help you. It is not easy for you but it is god that you have got Aspirin. I think your English is good but I understand you language also.Kerstin
Hello Im not often on this page, because i find it very difficult to write about the decease in english. Since you are from Norway, ill take this in Norwegian. Jeg bor på Stjørdal men fikk diagnosen Aps i Trondheim. Der er det en overlege som kan litt. Han satte meg først på albyl E etter en blodpropp i milten i 2007. Så fikk jeg hjerneslag i 2009 og ble satt på marevan. Måler INR hver 2-3 uke og har en fastlege som er fantastisk. Det er kommet flere nye medisiner men blir frarådet det pga at de ikke er testet ut nok på oss som har denne sykdommen. Selvmålingsapparat anbefaler de heller ikke da de viser feil for de med Aps og eller Lupus. Har selv slitt med å få folk til å forstå alvoret med denne sykdommen. Mannen min har lest boka jeg fikk fra Hughes, og lest seg opp på nettet. Men andre rundt meg skjønner ikke alvoret, så du har min fulle forståelse. Ingen dager er lik og smertene er jævlig innimellom. Ikke system på om de kommer i muskulaturen eller ledd. Trøtt nesten hele tiden, men klarer ikke sove. Mye hodepine. Alt dette er vanlig, følte det var så ille at jeg ville testes for Lupus. Blodprøven viste at jeg ikke har det i følge legen min. Formen min varierer etter hvor tykt/tynt blodet mitt er. Når det er tykt prater jeg mye feil, når det er tynt svetter jeg og får feberlignende symptomer. Jeg er søkt inn til legen i Trondheim og jeg har masse spørsmål til han. Vet ikke om dette hjalp noe, men du skal vite at du er ikke alene hilsen Kirsti på Stjørdal
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and I really think that he will do that.
How old were you when diagnosed with APS and what where your first symptoms?
Severe Pain caused by the damage and clots I had because of APS
Can APS go away or into remission? How about exercise and diet?
Does anybody know about Sneddons syndrome secondary to aps?
