i have recently been diagnosed with H... - Hughes Syndrome A...
i have recently been diagnosed with HS. Has anyone else suffered edema in the hands and feet also sore joints. Sometimes hard to walk
All I know that here in the US, HS means before bedtime. Sorry I couldn't help. Good luck!
Thanks Hughes syndrome is hs
Not seeing my consultant for
Several weeks
I had blue fingers in the winter which seemed to have changed to edema in the summer months. The joint pain symptoms have just flared up recently.
I assume all connected with problems with circulation which appear to be my main symptoms of hs. Thankfully I am not presenting any other major symptoms
I do not have any symptoms of raynauds right now - what is more dibilitating is the swelling in my hands and feet and sensitivity around my feet. Walking can be hard in the morning when I get out of bed and my tendons around my ankles feel really stiff!!
Sorry I missed the question you had before - I live in Scotland
I assume you have had Raynaud's and know what to look for to rule it out? This sounds like a natural progression of APS (Hughes). Different symptoms are portrayed in individualized progressions of the disease. People portray different symptoms at different stages and not all patients show all symptoms at once. Many people eventually have more than one autoimmune disease creating confusing combination of symptoms. I'm afraid there is such an array of what your possibilities are that an MD is the only sure way to go.
If the headaches get unbearable they could be a symptom of a "cerebral vascular event" or mini/major stroke. When my Dad had his he said it was the 'worst headache of his life'. So if it is truly unbearable pain get yourself to an emergency room for a CT to look for a brain bleed. I want to emphasize chances of this ocurring are slim, but if that kind of pain hits you, get your bottom moving!
Keep the site posted as many people share in your symptoms and what you are about to go through. There are some APS long timers here with all sorts of ways to manage pain. I learn something new almost every day just peeking in. One key till you get to the doctor is try to move whatever hurts in a gentle manner that will not cause more pain, but will eventually lessen the pain in the swelled parts of your body. Also, a hand and ankle gentle massage may alleviate some pain. Avoid salt, even sea salt in your diet. But don't stop moving. The more you move the better it gets. No extremes of course. One symptom of the disease that some people get is forgetfulness or confusion, called "brain fog". Discuss a plan for immediate pain relief with your doc and WRITE IT DOWN for future reference when you can't completely concentrate. For whatever your symptoms are currently, keep a daily medical journal, describing your syptoms. It will help with memory emmensly especially in the doctor's office and also what he responds and keep you organized and prepared to reference again and again. Also, you can't fool yourself.
Hope the swelling goes down and you have a fully prepared appointment so that you reap the knowledge you need.
apsfa.org/aps.htm This is the link to the United States APS Foundation. It can be very resourceful and a good link for your future library of APS information. It's has prooved an equal wealth of knowledge as this site and it may give you comfort.
Hi Tiger ... When I was diagnosed with APS I was referred to a rheumatologist who I told about the selling hands and feet, painful joints and difficulty walking. I was sent for an xray of said appendages and was told I have rheumatoid arthritis and put on placquinel.
Hope this helps ... I have quite a few problems associatedwith APS.
Hi i have got primary APS also been told i got fibromyalgia and sicca syndrome awaiting blood tests to confirm sjogrens syndrome. I dont have RA and query raynauds but my main complaint is similar to yours. My ankles feet are very tender and most morning it takes a few minutes until i can walk properly due to pain in my feet. My hands tend to swell when walking in heat or the cold and they aches esp in the cold wet weather. I cant say they go blue but do go pale white even -this gets uncomfortable and restricts full movement of opening my fingers fully... As someone has said alot of symptoms do over ride and with definitive APS often other auto immune conditions develop. Regarding walking i had profound fatigue and pains in my joint and calf muscles in particular this led to the dx of fibro recently i also have non restorative sleep and to add to the equation been told menopausal with high oestrogen levels 
keep wandering when things will settle down!! i was dx with hughes in 1990 and on warfarin until my 40's i coped very well with the fatigue but it seems with my age things have definately given me more things to contend with. Good luck hun are you on warfarin? have you had the symptoms a long time before diagnosis? love kathy xx
Hi
Thanks for replying Katie. Boy you've been through the mill and back. Makes me feel v lucky. My symptoms are relatively nothing compared with you although debilitating.
The hands and feet symptoms with you and me are exactly the same. What do you do to alleviate the swelling and the pain any hints you can give me? I've tried putting feet in cold water and lying with them up the wall think it helps a bit!!!
I'm only on low dose aspirin and am fighting against taking any other types of drugs. Antiinflamitories have the opposite effect and make me swell up so looking at complimentary meds just now.
Lesley x
Hi Lesley i find warmth helps so spend a while in the shower and exercise - i take amitrytylline for an old whiplash injury but i believe that probably helps with the pain - i am on warfarin and aspirin at the mo - hope to drop aspirin as now on plaquenil plus it irritates my stomache so have to take omeprazole to counteract that and i dont take it daily but will see neurologist mon so am sure he will say to stop it as my mri negative to stroke.
TIA's dont always show up on mri imagining but then it gets disputed that we have had them i know i have had them as feel very ill for approx 5 days after unlike a migraine - but i believe my latest visual disturbance was a migraine but doctors will always state the lesser of the conditions esp if no imaging proof which i feel means are symptoms do get belittled - i have to be so careful re complimentary meds due to interactions with warfarin amitrytylline definately helps me with pain and is safe with warfarin. I just hope plaquenil will help with my fatigue primarily as that is the worst of my symptoms then my memory concentration issues then the muscle discomfort and joint pains - which like many im sure is worse in wet cold conditions. Hope you find something to help you soon take care xxx
my hands and feet swell ALOT I have mentioned this time and time again to my doc's only clear response I have even been given is for my cardiologist last month and he says it could be heart strain ???
really hurts at times fingers like sausages and toes to match !
I have had pain in my feet for approx 6 months now it feels to me as if my bones hurt but this can come on any time of the day ? Family just laugh at me tentatively trying to walking on my feet doing my best not to fall over 
I've recently been drinking tonic water and this seems to help. I understand that my problem is caused by circulation. Could this also be your problem?
Tonic water definitely helps my severe calf cramping! I am surprised because I never heard of anyone else who even knew of it as a homeopathic remedy. Even though my rheumatologist raises an eyebrow at this cure, it definitely helps my cramping and swollen legs. You could try that yourself, just to see. I have about an 8 oz. glass of tonic water before bed. If it doesn't rid the cramping completely, it seems to lessen both duration of the cramp and how often it returns.It doesn't seem to help swelling though. I am at the weather's mercy and Illinois has the entire gambit of weather. Rough winters in the "Windy City" and hot, humid summers. Humidity has a very negative effect on my swelling. Also after one year of keeping a log, I've found the barometric pressure has an ill effect as well. Hard to believe with changes that minute, but that is what my data showed. Try the tonic and see.
So sorry 252525: It's brain fog for me today. You obviously have tried tonic. I'm glad it helps. I was just so surprised someone else used this old "french remedy" (according to my mom) that my fingers flew before my brain thought it through.
Just out of curiosity (I know it killed that darn cat), does your swelling increase or decrease during your average day's activities? Do you have a job that you sit all day at? Are you unconciously sitting a lot at home? Believe it or not exercises help the uncomfortable feeling of the swelling in my legs. So no matter how much it hurts at first, I make myself walk the treadmill for 30 min/day. This I do right after my coffee in the am to get on with the rest of my day. Typing actually helps my fingers limber up. If my hands are very bad, I take a device actually made for your tired feet and put my hands in it filled with luke-warm water till they look like raisens, because while its going on it feels great. It amounts to a little whirlpool. (Not expensive) But, it is short lived comfort. I'm thankful for even that on some days. If you could get your doctor to prescribe an aquatherapy program (ideal for your symptoms) you could achieve a lot of relief! In an Aquatherapy program, a physical therapist or physiatrist (sports MD) puts you through light exercise in a warm olympic size pool. If it is available, doctors love them because they help the most.
There! Aside from my brain fog today, I do hope those are helpful suggestions and that they lesson your pain.
I'm hope you are having a pain free day. I had problems with swollen feet, ankles and lower leg since being diagnosed with TM (transverse myeltis) then Hughes. I was referred to a lymphodema specialist a few months ago who took one look at me when I walked into the room and said you have secondary lymphodema I had three weeks of compression bandages and have to wear compression tights during the day which has helped so it might be worth asking if they can check if you have this. I also drink tonic water to help ease cramps at night
Wishing you all the best
My son has had a lot of trouble with leg and ankle swelling also sore joints and he found it very painful to walk, His Doctor has diagnosed him as having Hyperaldostorenism (hope I've spelled it correctly) also Raised Factor xi and has been prescribed Eplermone. Has anone had the same diagnosis? Hopefully he should be getting a referel to see someone who actually deals with Hughes Syndrome in the future, meybe he might have some answers. Wishing you well.
