My ET is giving me anxiety attack today. I had an accident the other day, fractured my knee and now I have too much time think while lying in bed all day.
Today I am worried not only short term risk of developing a blood clot (I do daily heparin injections and try to do all the needful tricks to avoid clotting), but also longer term risk of the CT-scan I received, since radiation is harmful and I already have increased risk of ET developing to leukemia.
It is comforting to see that at least many in the forum have also received CT-scans to various reasons. So probably it is not totally forbidden for MPN patients.
Sometimes I feel ET is making me crazy. Needed to let this out, thanks.
Bigcheat
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Bigcheat
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Totally understandable and best to get it out. Being confined with an injury is bad enough without all the other stuff going on.
The level of radiation exposure in a single CT of the knee is not something I would worry about. Depending on the type of CT, I believe it is about the same as several months worth of exposure to background radiation we all get every day. The docs can give you specifics if you really want them. The benefits of getting the CT are certainly worth it.
Regarding risk of progression to AML, remember that less than 1 percent of people with ET develop leukemia within 10 years. If you are getting bored, check out this brief bit of information about why MPNs progress. mympnteam.com/resources/how...
I knew I could count on you for help. I have a history of health anxiety but this feels so big now that I am really questioning my ability to cope this time. I certainly need all the support now. I am seeking of course medication and external help too.
Hi, it is good you posted this. I hope it helped just a little.It is so difficult to stop the mind going round and round picking up real and imagery points. And especially when you are forced to be inactive. I hope you find something to distract you, be it podcasts, audio books or funny YouTube videos. Hunter's link to mympnteam was very helpful. It set out possibilities. I have PV for 15 years so progression concerns me too. I try to put it into the 2% box to minamise the worry. Hope you can find some way to ease your worries.
Sorry to hear of your increased anxiety and fears. That is definitely a symptom of MPNs. I agree with the podcasts, audiobooks, you tube videos from the earlier post. Please stop looking up your disease and find things you enjoy like renovations, recipes or traveling. I will also add that you should try some breathing exercises or some meditation or calm music.
I use the app inside timer ( down load on any device, ask for help if not sure how) there are also other similar apps, I am using this one and love it. Lots of different ideas on there for stress, anxiety and help sleeping too. I recommend starting with some Breathwork, easy to do lying in bed.
Hope you are up and around and feeling great soon. ❤️
Definitely time to find something to entertain you and take your mind off of what you can't control. Once you've done what you can do to maximize the outcome for the situation you are in, and it sounds like you've done that, the best next step, and the hardest, is to let go of the worry.
The way I start on that goal is to remind myself that worrying over something that is out of your control does nothing but adds stress, which is not good for one's health, so I need to stop worrying.
Which is easy to say and incredibly difficult to do.
One of the techniques that works for me is to write all of my worries and concerns and fears down helps, and if I can burn the page(s) afterwards and imaging the worry about my trouble floating away helps too. Then I find something that is mentally stimulating and requires focus. As an example; I am trying to learn German from the Duolingo app. which is sufficiently engrossing for hours at a time.
Hello Bigcheat! I know how you feel . I sustained a serious knee injury in an accidental fall down a dark, unlit area a week ago. No broken bones although soft tissue injury . I also had notions about clots etc although as the days unfolded and I realised I was still no worse , I felt reassured. I couldn’t walk doggie so he is boarded with his favourite person. The house feels empty without him !
Today I am getting some medicine to help me through this. I have done it in the past but now it is time for some pharmacology to get some sleep, and break this vicious cycle of self acqusations and anxiety.
I have had so many CT's and Bone scans, my SWMBO thinks I should be glowing like a night light. The risk IS cumulative, and they shouldn't be undertaken lightly, but when medically necessary, there is no real substitute.
Also, the dose-reduction protocols that were being developed to decrease exposures while still providing detailed imaging have been tweaked and fine-tuned dramatically since I first started having relatively frequent radiologic studies in my later-teens and early 20's due to bone cancer.
When I worked in radiology in the early '00's, there was another huge, and strongly-tractioned movement to "dose kindly" that made even further gains in dose reduction protocols, and to the best of my knowledge, its scope was international, and is still ongoing.
TLDR: Don't worry, be happy, and get whatever scans your medical team recommend- because they're also aware of the cumulative risk.
Breathing exercises got me through my boards- and in my day, in addition to the 3-hour multiple choice exam w/ "K-questions", we also had a pass/fail clinical physical exam with a live subject and very stern proctor- which my career rested on passing., and it was only given once a year.
I almost forgot to remind you that calf-pumping exercises and compression stockings are huge in reducing your DVT risk, [although you'll likely need help donning the stockings]
Pull your foot up towards you as much as you can then point your foot away from you. Repeat on both legs.
Reps: start at 5-10 and increase up to 20-40
Sets: hourly or whenever you remember.
Also:
The importance of breathing exercises whilst on bed rest
Whilst you are on bed rest, you will be less active and are likely to take shallower breaths this can cause increased risk of developing pneumonia or a partially collapsed lung [called atelectasis]. Deep breaths are important for effective lung function and clearance of phlegm/ secretions.
Pain or discomfort in your chest/ back or abdomen (tummy) can mean you will be reluctant to breathe as deeply or cough as strongly as normal. This will put you at risk of developing a chest infection.
You will be advised to do deep breathing exercises (see below) by your medical team, nursing team or physiotherapist. Please do these exercises regularly, as advised, to minimise the risk of developing a chest infection.
Carry out your breathing exercises each waking hour whilst you are on bed rest and until you are out of bed and moving around
Breathing exercises:
Breathe in slowly through your nose and out through your mouth.
Breathe in fully, drawing air to the bottom of your lungs.
Do this six times, holding every third breath for five seconds.
Cough deeply from your stomach to your throat. You may or may not cough up some phlegm.
If you cough up some phlegm spit it into a pot or tissue and repeat the cycle untilyou are no longer coughing up any phlegm.
Repeat the exercises every waking hour
If pain is stopping you from performing these exercises regularly, do inform your
nurse so that you receive the right amount and type of pain relief.
I had a big scare on Valentine's Day- I woke up with a warm tender linear mass in the right lower medial aspect of my upper arm, and had severe pain in that area and my shoulder. I called in to work, and by the time SWMBO woke up this is what it looked like...
We went to the ER thinking it was a clot, although, we knew it was a strange location for one to occur. My Hct had been a bit above target [48], something one of my Heme/Onc MD's was kind of freaking out about, but the ones prescribing the Besremi didn't seem to be as worried about.
They did an U/S, but instead of a clot, they found that the mass was the body of the long head of my biceps muscle, because the tendon connecting it to my shoulder had spontaneously ruptured apparently after becoming frayed by friction against the bone spurs from the arthritis there.
Also, when they checked my CBC, my Hct had gone down to 46.
Purple ecchymosis [loose blood in subcutaneous tissues] from tendon rupture Day 2
The ecchymosis got pretty bad- spreading all the way down into my hand with swelling and soreness- the good news being that it proved my aspirin was working.
Unfortunately, over last weekend, I developed cellulitis in my forearm, but local heat and an antibiotic have that improving now too.
red and purple ecchymosis spread dependently down the arm.
I have an MRI appt coming up to evaluate whether I will need just rotator cuff repair, or a total shoulder replacement. Frankly, I was just relieved that I won't need to be anticoagulated long term.
Hang in there! I know how you feel...truly. Shortly after I was diagnosed I started to develop anxiety and panic attacks. So many tools help ease our mind and body, however I recommend meditation since you are at home. I use the app "Calm" as it is a guided mediation (my mind tends to wander and this keeps me centered). This will calm your nervous system. However if you find that you are getting really overwhelmed talking to a professional changed my life. Thankfully, these days you can do it from home! talkspace.com/
We are here......Wishing you all the best, you got this!
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ET treatment is cruel and illogical
Neely Diagnosed
AXSL MUTATION 
Letter from NHS
Does fatigue come on gradually
