I was just wondering how many people with his condition works? I have just got my first job since I've been diognosed and now my Children are both at full time school and I find it exhausting. Does anyone else feel this way?
I work stupid hours from 6-10 in the evenings and day times at weekends. It's only part time but it makes me feel completely drained. I'm not looking forward to next week as I've been put on a mad week with a shift everyday some split shifts. I don't know how I'm going to cope
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Charli84
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Hi Charli, I was sick the first 14 months, due to PE's then got my dx - was made redundant and have recently started to do massages part time - but yes also sooooo tired - now been offered a part time role, in the professional job I used to do - but I do find the more I do the more symptomatic i am - seems the more tired, the worse I am.... Not sure how any one else copes
I know that's what I thought. People who have a full time job with this condition must feel so ill all the time. Unless you get used to it. I'm not lookin forward to when the hot weather kicks in coz not only will I be tired but ill also have swollen legs
Hi there, this is fairly common feeling like this, the fatigue when doing anything can be awful. Are you able to schedule in any short rest breaks during your shifts, and any in the evening at home, beyond the endless jobs with family and children, which I understand so well? I find that if I pace myself I survive better with trying to get anything done. Mary F x
It's not possible to have any breaks apart from my scheduled break of 15 mins where I go and sit down. It's a pain as I like being back at work just hate how it makes me feel when I'm finished xx
Hi Charli 84: I wouldn't recommend doing what I did, in hindsight. I worked far longer than I should have. I had my own office (I could just shut the door) I had freedom of my own hours (I could work at home and e-mail it in) The hospital (where I worked) couldn't have done more to accommodate all my illnesses and still let me work. The safest place for me was AT the hospital. I could glean the most knowlege about everything I needed on the hospital computer and library. I had "elite doctors' elevator advice". Don't do this either, as there is no formal record nor documentation of elevator advice no matter who it comes from. I was extremely symptomatic and I should have succumbed to disability a good year or more before I finally did. It was unnecessary endurance on my part and the people I worked for as well, I am sure.
Perhaps I would have had less pain and therefore less pain meds if I had quit. But I was 48 and I was positive I would find the strength to snap out of this. Ha! As though we have control. THAT'S what I just didn't get. The lack of control issue. I am a classic control freak getting better with age. I hope.
Good luck working. I know how much good comes of it. Not just financially, but that's where I got all my kudos. All my pats on the back. There wasn't one day in 20 years I didn't learn someting new. It's where my intellect could thrive and I could talk to people who were interested in like things. I miss all that. But slowly... but surely... other things filled that space.
Good luck. Don't push yourself. The more you push, the more symptomatic you'll get, the more meds you'll need for pain-control, the more your liver has to process. Not a good path. If you could LISTEN to your body and stop when IT tells you (short of needing pain control), you'll be far better off. The thing that gets in the way of that is how fast the tiredness usually comes on, how apparent that is to others, how it drains you so completely and you never know for how long this time.
Ultimately, I guess that's why I couldn't continue to do an excellent job. I was brought up with the ethic that if you can't do your best, don't bother doing it at all. So now I don't do it at all. Listen to your body!
Thank you for your comments. I tried to claim disability living allowance but the benefits people said it wasn't a disability so I had to work I get the money. Is it possible to get a clot even though I'm on warfarin? I'm so worried about things like stroke and things and I don't even know much about this condition. All I know is we are higher risk. X
hello charlie. was told that i have aps 2 weeks ago so im like you and still learning. i was wondering when thay told u it wasnt a bisability.i bet thay said whots that!!! .wonder how thay would cope with all the syptoms that we have to cope with!. im suffering with a lot of stress at the moment and worry ( husband and end of marriage) im a carer and on sick at the moment but hoping to go bk. whot im trying to say is stay positive and try to keep stress at bay.take care.stacey.x
Hi Stacey sorry Ive only just seen Your comment. I don't think anyone knows what it is to be honest the amount of doctors and stuff that's said oh what's that when I've mentioned it. It's crazy how unaware people are x
A lot of satisfaction comes from knowlege. A lot of fear dissapates. If you poke around the archives of this Forum you will find all sorts of things you didn't know about your disease. Like what stage of it you are at. I am managed only on one 325 aspirin a day and opiod pain meds. My doctor says as far as my APS goes, I'm light weight. My anticardiolipid antibodies are steadily rising and she keeps hinting about injecting, but until my body really lets me know it needs more, I will try to avoid that assault to my body daily.
Incidentally, APS is not what disabled me. I had a stroke in 1998, probably caused by APS, but diagnosed as Central Nervus System Vasculitis. I was mega-steroided, chemotherapied and in 2 years they managed to "put it to sleep". I should have been disabled then. In about 2010/11, I finally got to the wheelchair state. Pain was unbearable. I changed doctors and harbored a keen dislike for neurologists.
My new rheumatologist is the one who had the sense to do a COMPLETE medical history (every tiny thing is important) from birth, ordered the appropriate tests and BANG, got the APS diagnosis. She put me on a 72 hr.Fentanyl patch which takes care of most of the pain and 2 Vicodin - 3 times a day (at my discretion as I have a real hang up with opiods having dealt with quite a few doctors who have become addicted to Vicodin). I only take it for serious pain break through.
The rheumatologist ordered physcial rehab. In two months I was out of the wheel chair, on to a cane and now that's all I need. I exercise every single day. I make it my job. As soon as I stop, pain steps in. I slip little series of exercises in all day so my body stays limber and doesn't ache when I lay down to sleep. The trick is not to over do it. Get it in your routine and don't break the routine. When I stand, I reach for the sky. When I go to the kitchen sink I do 5 backbends, forward and backward (stabilizing myself by hanging onto the sink). Takes less than 60 seconds. I do the same every time I go to the lavatory. (You need to hang on to the sink for safety so kitchen and bath are the best places for that exercise). I walk 45 min/day at 3.3 mph + auto- incline on my treadmill. I just had to lower it because I'm not up to parr lately. So everything is tweakable. (I made that word up). adjustable would be a better word according to current symptoms. Your symptoms change all the time. This Forum is an asenal of pain lesseners. People do all sorts of things to stop pain and can let you know, like yoga, aquatherapy, medatation, music therapy, certain diets. The more you learn the better prepared you are to ask you doctor questions and deal with your specific situation. You'll be educated when to worry. What are presymptoms of a stroke? Start reading! It becomes addictive.
The point is; don't be scared. Educate yourself so that when and if something happens to you, you will have a better chance of knowing what it is and what to do about it. Make yourself up a little emergency plan like putting 911 on your fast dial at home. Like having a friend or family give you a "well call" a day. (I get well calls ALL day so you have to limit them)
Most important: Start a journal. On a scale of 1-10 rate your pain; emotional and physical. Check list your meds, your exercises, your thinking skills, your pain and where. Spout off in it! Write down everything and anything you want. What you want to remember to talk to your doctor about. What he said back. Make a list in the back of your journal of sites that are useful to you like, National Institute of Health. This will aid in your memory greatly.
Also, I would think some regularity to your work schedule would be essential. You need to pace yourself and you need a workable time table to do that. If overwhelming tiredness is part of your symptoms you'll need to nap. And you'll need a place to fit it in. If your hours are morning, day and evening you can't possibly keep a regular schedule. I think you are from the UK and our disability rules are very different so I suggest you ask the adminstrators about that. I am an American/Frenchman. Wish I could help more, but I know you can help yourself and be better off for it. If you get disheartened, just come to this Forum. Someone will be there to give you solice. You are certainly not alone.
PS I believe it is possible to get another clot even though you are on warfarin,especially if you are still adjusting dose. BUT, I am not a doctor and I don't know for sure. There are many, many people who can answer that question from experience. Give them a chance to hop in and tell you what they have experienced. If you don't get a response, pose it as a separate question to the Forum. Or...google it. Or, I'll put my thinking cap back on!
Blimey it sounds like you have not had a good time of it. Sorry to hear you have had such a tough time. It's not a nice thing to be going through and I have been told by my rematologist that I'm the worst case he has dealt with. The more I read the more it worries me. I'm glad I joined this forum as I have learnt so much In the two days I've been on here. Ill make it my mission to make a journal. Thank you very much for your words it's helped me a lot to put things into perspective.
Honest Charli, I am light weight compared to some of the brave people I have met and read on this Forum. Most of my problems actually come from other diagnoses such as bladder cancer, disc problems in the spine and neck, fibromyalgia and osteoarthritis. I'm really in pretty good shape now, but it took a lot to get here. I'm not going to lie and say I'm not afraid of APS- the same as you are. But you know Charli, you could get hit by a bus tomorrow. We can all have our comfy rugs of dreams pulled right out from under us. When that happens, everybody could use a leg up till you find your balance. Then there's only one thing to do and that's put one foot in front of the other. Slow, but sure. Determination and practice. Right now I am praying my son blesses us with a grandchild -quick. Whole new identity for me. So there is a lot of good stuff ahead of me, even though there was a time I didn't think so. So I want to be in good shape for it. That's why I get up and try every day.
Don't forget to watch U-tube Patient Day (from last year). I think there are 3 parts. The new Patient Day at St. Thomas Hospital is coming up. The administrators can give you those links if you have trouble finding them yourself.
Best to you Charli!
Canary
I work full time, full year in an educational setting. I tend to find that no matter how awful I feel, I can generally keep going until I have a few days off at which time I have a tendency to get totally run down. I am currently on leave until mid next week and am struggling! It's so lovely not to have to get up at the crack of dawn but I haven't felt that well at all this past week.
Hi lissylou. I did a two year college course to get me back into things slowly and found that ok It's just the hours I'm having to work. I find I'm ok while I'm there it's when I get home that I'm suffering. I also find if I get to tired I can't keep hold of anything like if I go to pick something up ill drop it. Is this normal? The amount of glasses I've smashed I get really panicked about it sometimes and the more things are bothering me the more distressed I get. X
How did u manage to get them to help you out? I'm worried if I tell my work they might let me go or something and I like working I have felt for ages now that I don't have a purpose anymore now my children are at school so I like that I have something to do. It's just the hours
How did u manage to get them to help you out? I'm worried if I tell my work they might let me go or something and I like working I have felt for ages now that I don't have a purpose anymore now my children are at school so I like that I have something to do. It's just the hours
I work part time 3 days a week in a council office so am mainly sitting down most of the day which helps me to cope. I chill at the weekend mostly and on my days off which you probably can't do with a young family. Full time work made me ill so I wouldn't attempt it again. I think I have the right work balance at the moment. Can you not get Family tax credit to top up your husband's salary so that you don't have to work?
Hello. I work full time and my employers have been really good since my diagnosis. However, I am now entering two months of intense work, unavoidable overtime and I'm really worried about it.
I had my stroke last year at my busiest time of work. I think I got really run down and this disease took a hold. I think the key for me is going to be to be to pace myself and not get stressed about it and accept I can only do what I can., I'm not sure if there is a link between stress and APS (I am fairly new to all this), but stress seems to cause so many problems. If you are worrying about your hours, it really won't help your health - can you do less, or can you do more routine hours? I really do feel for you - good luck.
On the specific question of "can you get a clot on warfarin" the answer is yes, however this seems to be such a low probability that if it happens the medics get rather a surprise.
This statement is not based on medical expertise but experience:
1. I had a large DVT last year when I had been stable and therapeutic on warfarin for the 9 months previously, and that had only been a brief drop out of range. My target INR was 2-3, and was then increased to 2.5-3.5 with a preference for the high end.
2. I've just had a kidney stone pass, during the course of which I coughed up blood. Numerous doctor conversations started out with them saying "since you're therapeutic on warfarin and stable it won't be a PE", with an abrupt about-face when I reminded them I'd had a DVT last year whilst on warfarin, Thankfully a CT scan showed it was caused by lung infection, not PE, but I'm glad the issue was forced and they had to do the scans to be sure.
On the work front, I work full time and normally this is not a problem. I am definitely at the light end of Hughes, with few if any symptoms provided my INR is high enough. I did experience some symptoms when on lower INR, but since the DVT and increased INR I have been virtually symptom free. I have no other long term illnesses to complicate matters further, unlike many in this group.
So the fact is that Hughes results in a wide range of experiences. Your experience will be what it is, and no doubt somewhat unique to you. I do recommend learning what you can about the condition but caution that a bit of paranoia is natural when coming to terms with a new state of health, and during any health episode - I was almost in tears at the possibility of another PE a couple of days ago.
I also recommend as others have that you consciously learn about your own condition. The fact is you will end up being the expert on it, and the better informed you are about your own state, the better you can prompt the right conversations with the medical professionals when events arise.
Hi thanks for all your comments. I am finding this site very helpful and I'm so greatful for everyone's advice and words. I think what I need to do then is get referred to the clinic I'm London and discuss things with medics who have my notes to talk things through with me. Along with research and things and to speak to my employer about maybe getting some routine to my hours as I think I will benefit from it being in a routine rather then just random long hours.
As for further DVT on warfarin I had a suspected clot on my lung last year (thankfully it was just a chest infection) but I've never known If its possible to clot when being treated. So thank you for making me aware of this. I just need to get my INR stable as its all over the place at the min.
Hi ya I have been on for a wile but I find it very hard to work and have had to change my job role. I also applied for DLA and got turned down I also have have other problems. You need to make your employers aware because of the risks if anything happens at work. I have had a lot of time off on the verge of losing my job but at the same time they know all about my condition. Just try and sleep as much as you can. Take care xx
Hi ya I have been on for a wile but I find it very hard to work and have had to change my job role. I also applied for DLA and got turned down I also have have other problems. You need to make your employers aware because of the risks if anything happens at work. I have had a lot of time off on the verge of losing my job but at the same time they know all about my condition. Just try and sleep as much as you can. Take care xx
Hi, I am one who works full time as a teacher in the secondary sector and love job. However on there is price to pay- the on going battle with management who fail to understand the conditionsand think a stroke survive is someone who should be bed bound and that Hughes syndrome is something that is going to kill me without warning ect......
On day day I am run down no use when fetal home but UN like most I am symptom free as long as my inr is between 3-4 and only problems I have overcome have been a stroke and couple tias.
I thing once I have family ectopic I will have to drop my hours but for now things are good I think working hour is down to the individual and what the body is able to manage.
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