What is your most difficult symptom o... - Hughes Syndrome A...
What is your most difficult symptom or aspect of having Hughes Syndrome?
Hi. For me, it is just the feeling of being generally unwell all the time. I am frustrated because I am slower, more tired, achy and feeling pain all the time. There are so many things that are now out of my reach and I still struggle to deal with that.
headaches, tingling tips of fingers and constant pins and needles in hands and feet they are really annoying oh and sometimes abit of memory loss oh dear.
For me it's the fatigue and the lack of knowledge and understanding of APS in the medical community where I live. Even though I have met all the criteria (3 miscarriages, 3 pos. AP tests and 3 positive anti lupus antibodies tests) I still have not had a formal diagnosis AND I am not being treated with any anticoagulant meds. I self treat with aspirin but worry that isn't enough
Brain no longer working as it used to, k
tiredness , forgetfullness , and pain , but by far the worse is lack of knowledge from GPs .
Miscarriages is number 1, after that constant headaches, brain fog and muscle pain and feeling generally unwell all of the time.
Plaquenil has helped a lot with some of the pain and fatigue but not all and warfarin has given me some days of feeling about 60% better when I strike a good INR
All of the above!!
For me it is the lack of brain function, tiredness, headaches (massively helped by the heparin) and the lack of understanding about the condition by everyone who automatically believe they're an expert about me within moments of discussing APS.
Whites spots on my brain that they call wear and tear, but the doctors send my for MRIs as the spots have grown. Memory problems, head pain that cripples, loss of my left side, tireness are my side effects, pins and needles most of the time, and losing control of my bladder after a mild stroke . Finding that some drugs just don't help but my body finds its allergic to them.
The problem is lack of understanding from some doctors I meet on the way through health checks. My GPs are brilliant its doctors at hospitals I don't get, I have bern told I am drunk when I don't drink, told I am suffering from migraines when the pain is so much worse and only effects part of my head.
Hi Karen would you mind telling me where these white spots are on the brain ?
I had a brain scan that showed up what they called scaring on the brain in the grey matter.....does this sound familiar ?
I feel like my brain is shrinking it most certainly is not working these days.
Hope you did not mind me contacting you but it was your reply to angelpaws that interested me.
I have four large spots in the central part of my brain, they have grown in the last year by 2 cm which the doctor says is a slow pace but enough for them to worry a little.
This effects my memory and my speech, I can forget what I am saying and slur my words sometimes.
I dont know karen if it is down to a stroke i did loose vision in one eye only temporary & they wondered if it was a stroke but that was after the brain scan.
It was just like someone was pulling a black curtain across my eye, it was very strange.
I wonder what these white spots are that are growing, thank god they are growing slowly.
Are they doing more tests on you ?
What do you mean by white spots on the brain? I've had 7 strokes and have white patches all over, which I gather is where the trouble is. So you have you had a stroke? In recent months, following a mini stroke, I have incontinence problems and am on Ditropan which helps, but I now get very short tempered which is not me. Also I find that some doctors think mini strokes are migraines.
Doctors do vary in their attitudes...
I suffer with incontinence but put it down to lethargy and weak muscles.
I have not had a stroke put i am getting short fused.
7 strokes is a lot & yes you are right doctors do vary in attitude.
It's nice being able to talk to others in the same boat & let off a little steam.
I suffered 6 mini strokes one I was suffering while sat in front of a idiot doctor who told me to go home and sleep off a hangover, I don't drink so how he come to that I asked for a blood test to prove I don't drink.
My spots are to the central part of my brain. Today we for my results and they have not grown but do have a new scare, I was thinking had another stroke. I have lost my badder control was told to lose weight to help lol.
I am glad I am not the only one, its nice to read that others have the same problems as me, and getting doctors who have lack of knowledge to understand is hard work.
After having a nasty ear infection I started with all this. Trying to tell my daughter behaviour worker that doing even the housework is knackering she does not get it. My kids dont help though its them who make the mess. I thought it a cheek of her to say about my daughters room when as quick as I tidy anywhere she messes it up. think she should be in my shoes for a day. I work part time, spend most my time not in my house and the last thing I want to do is tidy up again is the same mess.
I am tired more of the time now.
The hot, red, sore, itching and peeling of my skin. It can keep me awake at night and it makes me very depressed.
Hello Pluto i suffer with the burning itching skin as well., my ankles itch like mad.
I think it is to do with inflamation going on in our boddies, a friend of mine sent me some Betnovate cream.....It has helped me a little.
I was saying to someone else i only have to rest my hand on my chin & i break out in a sore.
When i bath i can litteraly rub the skin off,.... it's a strange one.
I cant stand the heat so dreading the summer & the brightness of the sun hurts my eyes,
Hope you get some relief soon.
If you have itching around the ankles-or legs, even with peeling, it could be vasculitis, which is caused by imperfect blood flow. I have used Betnovate,Diprobase and other creams but they do not help, they just oil up the skin to help the dryness. Bright weather also makes me cringe.
I thought the ankle itching could be hives what ever it is it's worse at night drives me mad, sometimes the rash is raised with little red blistery bumps.
Is yours worse at night ? When you put the itching together with everything else it is a wonder we still have our sanity.
Tests have shown inflamation in my blood & protien in my urine,
What a relief to be able to talk about all these horrid things & to find your not alone.
It's no wonder we are getting ratty. Grrrr 
Hello,
Does your hands burn-sting like they are frostbitten from the snow? Does hot running tap water burn-sting your hands if its too hot? In bed, does your palms-hands burn? If so what do you do for it? What does doctor say is the cause? Thank you! Dave
How do you put this dreadful feeling into words, for me it's the lethargy & brain fog.
In fact it is all of it i want my life back.....so many things i cant do now that i used to love.
It's a bitch of a thing & i hate it when Drs & consultants look at you as if it's all in the mind
Just to be able to awake refreshed...feel normal what ever that is.
What makes it worse for me is my son has the same illnesses so i have to watch him suffer to......Wish i had the answers so i could help you all....If only i could.
For me it is the loss of brain power. My concentration levels are awfull and my memory terrible.
Ditto, fatigue, brain fog and migraines that make me want to cut my own head off! Couple that lot with so called medical professionals who do not even know what Hughes is. Only saving grace at the moment is Guys Hospital....my little ray of light at the end of the tunnel
Jilly...you said it for me, i want my old life back. My brain used to b sharp,now i forget to call people back. I cant ride horses or my bike. I cant walk more than two blocks. I cant b in the sun or the cold. Im a nature and animal lover and worked on a livestock farm for many years and had to leave due to the illness. I try to focus on what i can do...hugs to all of you...Teresa....and what annoys me the most? "But you look fine" "your so young, wait til youre my age"
I hate the burning pains I get with my peripheral neuropathy, having to wear knee length support stockings, having sensitive skin on my lower legs, and the unpredictable tiredness.
you've opened a can of worms here! For me, like so many, it's the brain thing. I still think my basic intelligence is unimpaired, but I am so slow. Getting money out of my purse is torture and counting it even worse. I hate not being of use in society and I hate having to ask for help. However, I count myself lucky that I have friends and family to ask. Best wishes to you all.
Stella
A can of worms Stella ! More like giant snakes 
we could all go on for ever with our ailments.
For me it is like being trapped in a useless body, you know what you wont to do but you just cant do it.
It takes me all day to have a bath, wash my hair then treat my skin & itchy scalp, by the time i have finished i'm exhausted.
I was a good all rounder & could put my hand to most tasks now i dont even recognize myself anymore.
The weight is piling on even my face has changed oh to turn the clock back.....:).
What a great question Dagen, for me it is the constant feeling of being 'under the weather' upper right abdominal and shoulder pain, and the itching! ...the itching drives me insane!!! , I have alllllllll the steroids creams, and alternate then dependant on the severity of the annoyance, it's keeps me awake at night, and then I'm exhausted the next day, I still work full time, and have always written my ' brain fog' moments off to tiredness, I keep a supply of steroids as I do break out in hives as well ( my GP is aware ), and the aches, constant aches, sometimes I feel like I walk as if all my joints are broken!. ... And the cold is not my friend!! It's good to know that we are not alone in our ailments, it makes me feel 'normal' when others express they feel the same way!
I'm very glad I asked this question because understanding this syndrome for people who don't suffer from it can be difficult and often I feel like maybe it is all in my head (although the feeling is fleeting). Finding all of you who truly understand and have many of the same physical, emotional and mental challenges APS causes has been a godsend to me. By the time I was 31 years old (5 yrs ago) I had lost both of my parents, and with that I lost the only true unconditional love, understanding and support I had regarding my health issues and I have since felt very much alone navigating through all of this... with that said, I want to personally thank everyone who has contributed in any way to this forum/community because without you I would still be questioning myself and the validity of my symptoms just like the doctors do... even though I often say to myself "if I was a farm animal the farmer would euthanize me!"
Thank you all for your stories, knowledge, understanding, compassion, honesty, and support.
Forever grateful,
Dagen
HI there, for me it is the unremitting fatigue coupled with migraine and brain fog...there are more things but this is what drives me mad the most. Mary F x
For me the fatigue is the worst thing. I have to lie down for at least. Half an hour several times a day to recharge my battery otherwise come to a standstill. I
also get bad chest pain
which was completely disabling and very frightening especially before I got a diagnosis. That's less frequent now.
Hi
Brain fog and confusion are one of the worst things. The other is my feet and an un- noticed stress fracture from a couple of years ago so now my toes are painful and arthritic and I hate not being able to go for a walk because they are too painful.
A lifetime of 24/7 headaches up to age 44, now much better on warfarin. Fatigue, being unable to maintain any physical activity that 'normal' people can. Even bending down makes my head feel it will explode. Pain anywhere and everywhere, perfect recipe to be called a hypochondriac. In the last year add in hearing loss, hyperacusis and tinnitus.
I'm pretty sure there is loads more but being part of life for so long I can't tell what is normal and what is APS.
Definitely brain fog and fatigue. I feel like the oldest 36 year old on the planet. I'm fighting it like mad but I don't know if I now will ever reach my career aspirations purely because my memory is so poor.
for me it is knowing my old life has gone-so i'm starting a new one doing what i can.i had 2 strokes with no loss of mobility so i'm lucky..and then diagnosed with aps. i am on warfarin 8mg but bloods go up and down, as does my brain fog, tiredness, speech and just general memory stuff..after scans i have numerous white patches (infarcts?) all over brain. my kids a fabulous,help and suport me in all sorts of ways.. i have no other family but a couple of great friends who knew me before..and are still here with me! i am going back to work fultime tomorrow with supportive employer-i've been working now and then with them-and they have told me not to worry-if i feel unwell go home, if its too much they will drop my hours. i signed off esa as i cant keep going through the hoops-finances are awful..i've won 2 tribunals and sick of eing called back over and over..i am taking charge (with lots of help)....onwards, and upwards i hope..x
1. Finding the right doctor with experience.
2. Brain: Sluggish, low functional level of operating, fog, memory, slow to process thoughts
3. Massive fatigue, Hey there's a fire, "Okay I'm going to take a nap first".
4. Body pain all over. Answers not necessarily in order.
Good question Dagen:
1. A horrible fear of waking up and not being able to speak, hear, feel, taste, smell or communicate. I stroke in my sleep and am trapped in my body as well as trapped in time. This happened to my father after his CVA (cerebral vascular accident or stroke) 1998. Trapped in his body for SEVEN years. We're not really sure he was in there at all.
2.It is not being able to work due to physical and mental decline, and losing the opportunity to obtain my career opportunities and be in a position to help others. In short, giving in to disease.
3 I've been dealing with this, combined with multiple diagnoses, for 10/11 years now always truly believeing tomorrow had to be better than today; much to my dismay, every.... single.... day.
4, I cannot bear to watch my children watch me go through this and have no answers for them. Worse is having to tell them to pay attention because they don't know if it is genetic. They will say it clusters. Will it cluster in my future grandchild? Who knows? It didn't in my brother or sister. However, out of six girls that my brother had - 2 have brain tumors and his youngest (24) recently died in an All Terraine Vehicle (ATV) accident. My brother (58) died of lung cancer the Thanksgiving Day (Nov. 24) before.
5. I'm scared of #1 all the time. I couldn't count all my fears there are so many. I actually fear my fear.
Canary
That is easy. of course everything everyone said above but the most important to me is the disappointed look on my three year old granddaughters face when she says "mimi can't play with me because she's always too sick". Breaks my heart each time.
Swollen hands that are numb & cause me to drop stuff. Swollen calfs fit to split that make walking difficult and jumping twitches in them when I sleep. Feeling tired all the time & awful constant headaches
dizzy sensation causing me to fall or lose balance particularly on the right side
Oh wow! Thank you for asking that question! We should all print this thread off and show it to those who don't understand (including doctors).
Pain and fatigue for me is the worst. Then with the fatigue comes the arm flailing, wrist rolling and micro seizures (not nice when I'm out in public - feel like a freak show!)
Frustration is next - at the medical professionals who don't understand and don't listen, and at my decline in mental cognisance (from a grammar school educated company director to one who stumbles on and mixes up simple words and who forgets everything!)
Fear is another constant. I have had Tia's, a silent stroke and now have an aneurysm on the brain. I feel like a ticking time bomb! Fear that my children could also develop this thing (my daughter is being tested next week, my eldest son doesn't want to know and the youngest may or may not in the future)
Gratitude is down the list because I do have to have a good rummage in the bottom of the bag of APS to find it sometimes! But yes, it is there - I am grateful it's not worse, that I'm still here, can still pop into town for a coffee on a good day so long as I have time to rest and recover after! Grateful that I was lucky enough to have my three children (who in turn have presented me with grandchildren) 😁
Hi minnime63,
I have read what you have told us before that your INR is usually very low (around 2.0).
APS is about too sticky blood. My INR is around 3.5 and a little higher. You should not have to feel like "a ticking bomb". I know of your aneyrysm on the brain. Perhaps it is not so bad as you think.
I hope you have tried everything to get an APS-Specialist. The doctors tend to be afraid of us because we are uncommon and they do not understand what to look for.
My two grown-up girls wanted themselves to be tested for APS some years ago. Negative. They do not have any symptoms as far as I know.
Best wishes to you from Kerstin in Stockholm
Found it! Thanks for responding, Kerstin. I don't understand how I came across such an old post but there we are! I have managed to get an appointment at Guys in July to see Prof Hunt and am hoping she can instruct my local medics 😋 My INR I'd stable at 2.5 now and only gets checked once a month. Not ideal but what can I do? The aneurysm isn't too bad, it's going to be checked again in five months to see if it's grown. But how are you? What is your story?
I am 71 but my APS-story started perhaps 25 years ago, but that is a too long story.
I had a lot of neurological symptoms and now I know I have Pulmonell Hypertension and two leaking heartvalves but it is stable and I feel fine on Warfarin. That is why I always believe everyone else with APS will notice the big difference when they start Warfarin. Perhaps they do not or they are not stable and in range with the INR. Or Warfarin suits me very well. I do not know. I selftest since 4 years. I test my blood every second day.
When I read "Sticky Blood Explained" I understood that I had APS and that I had to start Warfarin as the Doctors had adviced me to do for a rather long time. Kay Thackray (who wrote the book) and I had especially one symptom exactly in common.
Hope Prof Hunt will listen to your problem and perhaps you will be able to selftest.
Good luck from Kerstin!
That's a long time to be carrying this. Yes I want to self-test, and I'm hoping I can get my range raised I've been waiting to hear if I can get the strips on the NHS for weeks now, but I remain hopeful and resolute! I, and I'm sure countless others on this group, am so grateful for your support and advice xx
Upcoming episode of 'House' featuring APS/Hughes Syndrome.....
Has anyone had tinnitus as a symptom of Hughes?
