how does hughes syndrome affect you.

[oleary]

[jennybee]

Hi! I get really painful joints and muscles, at the moment its in my feet and knees and makes it very difficult to walk. I Have terrible migraines, brain fog, head pressure. terrible memory,Fatigue. Ive had no misscarriages(i have one child) and have had a Pulmonary Embolism. think thats it...

[oleary in reply to jennybee]

thanx 4 the reply, i also suffer frm very bad joint pains n every muscle aches in my body, i also hve very bad migrains that go on for days, with it i suffer very bad vertigo. i find wen my inr is low thats wen my symtoms are worse. with these flares i get memory fog, fatigue and deprestion. im on betta blockers, paracetamol, naproxen gastro releif n walfrin.

[shell64]

hi i get alot of migraines. im tired alot at the minute ,lots of pain when i walk n lots of pins n needles n numbness n burning in legs but i have another blood disorder so could be a mixture with the hughes .

[oleary in reply to shell64]

i suffer with very bad joint pains n muscle aches, migrains can last for days, i take alot of pain releif, paracetmols,naproxen plus betta blockers n gastro releif plus life time walfrin. when i have the headaches i get very bad vertigo. i get tired very quick and get deprestion with a flare.

[daisyd]

Hi

Symptom olympics by Suzypaws

Has a good list, from which I and many others suffer from

Karen xx

Just check symptoms on the tags,

[oleary in reply to daisyd]

ah okay hun thanx i will.

[MaryF Administrator]

and me! Mary F

[viv112]

I have managed to stay well for the last 3 years but only by living within my comfort zone all the time. I had to give up my permanent part time job when I felt dreadful and now just do relief work when I am needed, which means less money but I can choose how much work I want depending on how I am feeling. I used to feel good about how much I could pack into doing in a day but now I have to consciously try to relax and pace myself and avoid fatigue and stress. If I over-exert myself I usually suffer for it afterwards.

I do regular yoga and pilates which does my body good with all the stretching but I feel I am more prone to muscle ache and strain and tendonitis than other people. After doing a 6 mile walk last weekend my legs are really aching, particularly when I get up in the morning. Maybe if I had only done 4 they would have been fine. That’s what I find hard- not being able to push myself that little bit further, for fear of the consequences!

[oleary in reply to viv112]

im the same, i was very active n independant rushing all about the place, i just cant do it now i find i get very tired with just the simplist of jobs, aving to sit down alot. it has really knocked my self asteam. when im like this i get very upset with alot of emotions. some times i sit back n say why me. do u ever feel like this.

[viv112]

Hi, yes I know just how you feel and think that most of us have felt like you are feeling and certainly at the beginning when we get our diagnosis. I have been fortunate because I just take 75mg aspirin a day now and that has been enough, along with the lifestyle changes, to keep me feeling well. I don’t need to sleep for an hour every afternoon like I used to. When I tell my rheumatology consultant that I wish I didn’t get so tired she said I could try taking warfarin but as I haven’t had a clot or stroke or heart attack in the last 3 years I prefer not to. Maybe you need to talk to your GP or consultant about trying a different blood-thinning medication.

I was 56 when I discovered I had Hughes Syndrome and just at the stage where my family had grown up and I was looking forward to doing lots of new things. When my daughter got married last year I told her I wouldn’t be able to keep going all day until midnight like her other guests and I left her evening reception at about 8.30pm. I was disappointed but I don’t feel sorry for myself because I know there are so many people much worse off than myself, and so many women who have died at an early age from cancer. Try to stay positive and to feel good about what you can still do well, and can still enjoy.

[oleary in reply to viv112]

yeah i understand that, i have 6 beautiful children n a fantastic husband n their the 1s that keep me going n keep me strong. i no that im very lucky n that there are ppl out there that are worse off n im very greatfull that im alive, i think i just need to get used to having this condition n learn how to deal with it as ive only known abt it about 7mths.

[viv112]

Yes, I felt really anxious and stressed during that first year, but the best thing that happened was talking to my rheumatologist. My GPs didn’t know the first thing about Hughes Syndrome. I went to see the GPs with my foot all purple and swollen, told them about slurring my words, waking up with my mouth drooping down at one side. They thought I had vasculitis (I didn’t). I had blood tests which were abnormal and showed up the antibodies but it took 4 months wait before my appointment to see a rheumatology consultant. She has been great because she is interested in APS and wants to keep seeing me and having the blood tests so she can see what is happening in my blood. She calmed me down by talking to me and answering all my questions. When I was afraid of doing a 7 hour plane journey to visit my daughter she encouraged me to go and reassured me, and I was fine. I know I can always contact her if there is something I am worried about. If you don’t feel you are getting the support you need –and I don’t think you are – maybe you should seek out another rheumatologist who can make you feel better about managing your problems.

[oleary in reply to viv112]

i told my rheumatologist just how i was feeling n her answer to me was hughes syndrome only gives u thick blood n that all the symtoms im having are nt 2 do with my condition, she said maybe the migrains are. even my doctor says hes not sure if they are or not. they just dnt sem 2 know alot about the condition. all i want is some answers about hughes syndrome n the symtoms, then it wount'nt make me feel like im going mad.

[emmaj]

Hi, I felt for a long time like i was a hypochondriac as I knew something wasnt right - we all have ways of trying not to face the fact there is something wrong, but its a huge relief when you finally get a diagnosis - and a lot of the first symptoms I get and dont say to anyone for fear of looking like a moaner, but its a huge support network on here to know that others have the same problems and finding ways round them all. Every day it feels like something new hits sometimes, but its such a hidden illness and not a lot of people understand unless you have it, wish you luck and were always here when a new symptom hits and you get a bit scared x

[oleary in reply to emmaj]

thats how i feel, and when i went 2 the doctors she said the more i think about the changes thats happening 2 me the more likely they will seem worse than what they really are, how can they say that i know how im feeling i mean its not all in my head yet thats how they make me feel. when i get really bad it feels like im dieing, i just cant think straight , feel so weak, dizzy as if im going 2 passout,chest pains short of breath, it really scares me.

[Sal0712]

I agree with all the other posts on this subject. I sometimes feel like I'm in a little bubble of my own and no-one understands the daily struggles that some of us face. The only time I feel better about myself is when I come onto this site and see what everyone else is up to. It really does help having others with the same problems to talk to. I was so glad when I found my Hughes family. I don't feel like the odd one out, and party pooper any more!! I'm sure most of you will understand where I'm coming from with that statement!! Take care all out there x x Sally x x

[oleary in reply to Sal0712]

yeah i agree, its hard n ppl just dnt understand what your going through n matter how much they love n care 4u, they try. Even the docs n that dnt understand, im so glad i found this site i dnt feel so alone nw.

[oleary]

hi, yeah i would like to find some1 in my area that understands as i dnt think my doctors n that dnt.

[Hidden]

It would be interesting to compare the symptoms of fellow sufferers based upon their levels of the various antibodies that are tested to determine whether someone is APS positive or not. I am Lupus Anticoagulant positive and I am also off the scale for both Anticardiolipin and Beta 2 Glycoprotein 1. I suffer from chronic fatigue, appalling short term memory issues, problems forming my words, constant headaches, cluster migraines (one after the other), joint pains in knees, elbows and wrists and basically feel ill all the time with flu-like symptoms. Attention span is dire and become very stressed with the smallest of issues. I am on lifetime Warfarin and 40mg daily of Simvastatin. Incidentally, I have just had a brain scan (last Monday) and am being referred by my Haematologist to St. Thomas's and also to a Neurologist so loads happening to me at the moment! Joy! Will keep you posted.

Paul

[oleary]

hiya i am also going through the same as you and it affects me every day, my headaches really scare me, makes me feel as if im going around the twist and that something is very wrong. i am also going to see a neurologist, i hope he can shed some lite on what is going on .

[StevePT]

I have seen the various different symptoms that people experience with aps and mine are very similar to PaulGol's.However my fatigue is often delayed post exertion fatigue and I have been wondering if I also have ME.Can others share their fatigue symptoms?I am at my best in the evening and worst in the morning and the fatigue is often delayed for 24 hours after any exertion.