I'm having a really hard time lately worrying that every twinge in my legs is a blood clot. I was diagnosed with APS in August 2015 after 2 positive anticardiolipin and anti beta2 glycoprotein results. I've NEVER had a blood clot and hopefully I never will, but I am so preoccupied with what COULD happen. I am 35 and I do smoke. I know I need to quit. My diet is OK, but could be loads better and I'm slightly overweight. I just can't get out of my own head and worry that I'm going to start avoiding life because of the fear. I also have anxiety/panic so that certainly doesn't help. Any tips/advice would be greatly appreciated!! Thanks!
Jess
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JessNY
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Hi there, we all worry from time to time, however it is a good idea to knock the smoking on the head, and also Mindfulness Techniques can be good for keeping you on the level with regard to 'urge surfing' ie noticing an urge to light up without doing what it tells you. I am also slowly losing weight. I used to smoke years back, and I swapped it for exercise it made me feel more determined not to. I still do my exercise, three sets of 10 minutes a day in the house, plus other walking on top. Keep happy and well. MaryF
You can wear medical grade compression socks when you are going on long car rides. I would recommend the 20-30 MMhg compression socks, as those are not too tight. The higher strength ones are mostly for people who suffer from chronic venous insufficiency. I will be returning to long haul driving soon, and even being on blood thinners for life, I will be wearing compression socks on both legs as an added precaution. You should also stop the car every hour and get out and go for a walk. I hope this helps you some.
Jess are u from New York??? I'm from Long Island New York! Yes there are ways to stop worrying! Put ur worrying into research and us to talk to! I'm on Cymbalta! Many people with APS are on Cymbalta! It's not only an antidepressant, many people say on this forum that it also helps with pain! I use to get panic attacks cuz I knew I had something wrong with me that the DICS were missing!!! My greatest fear was that it wud be too late!!! It almost was till I was DX'd in October with APS! Please read my post I just wrote on NYC SPECIALIST/RHEUMOTOLOGIST IN HOSPITAL FOR SPECIAL SURGERY! If u live in NY JESS can u give me a town and maybe I can help you! Stay with this Hughes Syndrome Forum because they saved my life literally! Please keep in touch with me and this forum! Also when u get a panic attack try to breathe in thy ur nose and out thru your mouth! You must speak to a friend and have a good specialist and good support system! Do u have any children Jess! I too started smoking again after one year of quitting! We must do that first because that is the word possible thing we can do to ourselves! I use to walk and that helped me with the panic attacks! Wen I walked I solved all the problems of the world and my main thought was reaching that goal of the next block, the next half a mile, the next mile! Write down what ur goals are and stick to it! Wen I had panic attacks I did that and it helped! If u have a sister Ora close friend ask them to walk with u! Also when ur having a panic attack drink water! My sis told me she read that water is an amazing healer, it helped me to cleanse my mind, body and soul! I hope these few tips help u! Force yourself to do these little things and see what happens! Remember WRITE DOWN YOUR GOAL AND FOLLOW THEM!!! We all need goals to follow!!! Please keep in touch with us or me and I will do whatever I can to help u thru this time!!!
Im from LI originally but now I'm living in Nebraska with my boyfriend. I've had anxiety and panic attacks since I was 17. The APS dx is very recent. Most of the time, anxiety is just a part of who I am and I deal with it. I still get panic attacks, but through the years I've learned how to just roll with it. Deep breathing and tons of research on anxiety has been a godsend!! I don't always have the invasive persistent thoughts, but when they do come, it takes a while for me to get out of my own head. Even sitting here, my right calf feels tight...not pain, just feels weird and different from my left side. Sometimes I get the same sensation on the left. This morning I had an itch on the side of my thigh and when I touched the area it was very tender like when you push down on a bruise....except there isn't a bruise. There's no discoloration, no swelling or anything but I keep thinking there's something wrong. I'm going on a mini road trip and will be in the car for at least an hour and I'm freaking out about clots. It really is exhausting to be so preoccupied with thoughts.
Mayo Clinic has excellent Autoimmune Disorder specialists and Researchers A+ ...they have locations in Iowa, Minn, Wisconsin and perhaps nearer to Nebraska
I have read that you have got good advice like stop smoking which you must, but I want to ask you if you have got an APS-Doctor to communicate with? Are you on any anticoagulation to stop ev clots? Have you concidered som Anti-depressive medication at a low level? You need to speak to a real good doctor who understand your difficult situation at the moment.
Please stay on this site and also please tell us how it goes for you. This is a curious illness in so many ways and all parts of our body can be onvolved.
I know the feeling Jess. I had a clot from ankle to hip in August, and the doctor wanted to send me home to rest. After pointing out my left leg was almost purple and 2 inches larger than the other one he agreed to the ultrasound. I've been on xarelto ever since, and while I am much better now I still have a little swelling, or pain, or numbness everyday. I am always thinking that I may be re clotting, and drove me insane. I had to decide to let it go and live my life. I tell myself now that if I have another clot it would be obvious just like it was last time, and I shouldn't worry about things that are not there. APS may very well get me one day through stroke, or a PE, but until that happens I'm going to focus on the day thats in front me. When I have what I call "a bad leg day" I think about that 12 year old with terminal cancer. It reminds me that I have no right to complain. Stay positive, and remember, you know your body better than anyone. Don't worry too much, but pay attention at the same time.
I think you are protected as you are on anticoagulation.
If you have got a Specialist of APS and are properly and steady anticoagulated you can do no more to protect yourself.
Best wishes from Kerstin in Stockholm
I have been almost paralyzed by fear for the past three years. You can either live in fear or ignore the fear and press on. That is much easier said than done. I probably had APS antibodies my entire life, but I only had my blood clots after I fell down and hurt my right leg. I had been a long haul truck driver for years before my blood clots hit. I used to drive for up to 18 hours at a time with very few pit stops. I am also overweight and I was smoker before my blood clots hit. Even with all of those risk factors, my clots only happened after an accident (what doctors call a provoked blood clot). I would not be too worried at this point in time if you are not having any bad symptoms from your APS. I would just try and reduce any rick factors for clots like smoking, being overweight, and taking oral contraceptives. You also know what to do when you take a long car ride, spend extensive time in bed immobilized, get surgeries, or fly on airplanes. You have to be extra alert of your body and you must take certain precautions when doing the above mentioned activities. Your doctor will be the best person to give you the proper advice and guidance. I hope you are feeling better.
I agree with all the responses you've received in the past days, stressing the need to quit smoking, being better informed, compromising yourself with exercise, etc
Like you I am one of the lucky ones not being through a clot experience, I used to smoke, and did worry (and still!). But what is definitely helping a lot on the psychological consequences of APS is embracing as part of my daily life a discipline such as yoga/mrditation. As everybody knows it is a body mind practice that helps with fears, acceptance and let go. It is also excellent for building stamina and postures are very adaptable to your daily physical condition.
This doesn't mean that you must practice yoga. What I will suggest is to find out for yourself any practice that suits you encompassing body and mind.
Thank you for the posts. I don't regularly practice yoga anymore, why, I have no idea because I always felt better mentally when I did do it. I do however practice deep breathing in a yoga pose. That definitely helps. Most days I'm thankfully not in my head and tell myself that I know my body and will know when something is truly wrong. I've found that this forum in particular helps a great deal with realizing that I'm not alone and that so many people deal with what I deal with on a daily basis. Finding this has truly been a godsend.
SSRII's antidepressants "turn down the volume"...anxiety,racing thoughts etc.....I've been on them for 20 years....combination of Wellbutrin + Zoloft(ssri)....you need an asssessment by a medical professional as ssriis affect everyone differently...too long to explain...but you might "google" it....I stopped smoking 16 years ago...hardest thing I have ever done....sooo grateful....used Nicotine patch ...30 days on highest dose, then 30 days on reduced dose..and 3rd month on very low dose....worked.....DO NOT USE GUM....gives you a "shot of nicotine" and when it wears off you crave more....A patch keeps LEVEL OF NICOTINE IN YOUR bloodstream 24/7 so craving reduced....you just have to WEAN OFF slowly
I've been on Paxil since I was 19 and I am 35 now. It has certainly helped. Thanks for the links to the mayo clinic!
you're welcome.....I work in the mental health field and I do know that SSRI's can stop working or need a boost or whatever (I am not a prescriber!)...I also know folks who have traveled to Mayo from the NYC area when in need of a diagnosis..excellent teaching and research medical center
Hi Jess.I am same as you and never had blood clots but have APS.I do agree with others that stopping smking or at least going onto the e cigs would help but if you are like me and are prone to worry you just can't help it.
I suppose trying to pre occupy yourself would take your mind off things a bit and yoga if that appeals to you.
It's not the worrying that will prevent clots but you just have to take extra care of yourself. I should practice what I preach really as I had bad fall on Sunday but no clots thank goodness only me !
I suggest you try a Baby-Aspirin each day and take it together with food. Only a low dose of 75 mg is enough. This is sometimes suggested by Doctors to people at your age with positive antibodies without an "event" to try.
Then if you also use the stockings suggested earlier and stop smoking you can feel rather protected and do not have to think of the "clots" all the time.
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