I wrote about going to physical therapy earlier this year, and it helped a lot. None of the exercises were terribly strenuous. Nothing hurt a lot. Most involved stretches. But do allow me this brief rant:
I ended up having to pay about $400 for this treatment. It was worth it, and I will pay it, but I could have gotten out of this a lot cheaper if I had just asked for a prescription for a pain killer. And therein lies a big problem with American health care. Physical therapy is a "high touch" proposition. You need an actual person to assess your problem, show you what to do, make sure you're doing it properly, prescribe your exercise regimen, and follow up to see if it's working. It doesn't work all at once. I did not dance out of the office Day One and throw my cane in a gutter. But six weeks later, I am sleeping at night. And I am saved having to take a bunch of medication. I am not walking like Chester on Gunsmoke. Why don't insurance companies cover this treatment better if they truly want people off the oxy and other pain meds?
Anyhow, I should be good as long as I do the exercises. Which leads me to ...
Why, oh, why did I not get a flu shot before the school year started? Maybe it wouldn't have helped stave off the virus I have been trying to throw for over a week now, but it couldn't have hurt. And now I am draggy, gaggy, and tired, and I don't wanna do exercises!
The virus started with the worst sore throat ever (so probably cold, not flu), followed by headaches and low fever, then congestion and loose cough. I have been taking my Albuterol inhaler (otherwise, I get bronchitis) and Tylenol occasionally. This is a good time to remind people that those of us with ET are immuno-compromised, but even frequent hand-washing and avoiding door handles (and maybe flu shots) won't prevent all illness. But if you need to catch up on your vaccinations, please do it!
Finally, I've started massage therapy. While the PT has helped my sciatica, I do have problems with neck and shoulder pain due to scoliosis, which I've known about forever. But my neck and shoulders are where I tend to store up tension and anxiety ... and a lot of tension and anxiety can build up over 63 years. The PT ladies suggested a massage a few times a month to get the kinks out.
So I've been having 30 minutes of upper back, neck, and head work done each Friday. This helped with headaches almost right away. In fact, when the massage therapist pressed on a point in my shoulder, I felt it trigger the headache I get in the top right quadrant of my skull. Turns out there are little muscles under your scalp attached to the nerves in your back and neck. So taking the zing out of those points, seems to have cleared it right up. It may take another few visits to smooth out the rest of the kinks. But massage does make me more aware of my posture, which helps with all other back issues.
Is this cheap? No it is not. The going rate for massages is about a dollar a minute in my area. It's probably more expensive elsewhere, especially if you go to a spa where they offer aromatherapy, hot rocks, and people called aestheticians. Once it starts to work, I will reduce the massages to every other week. The therapist said she can also help with the sciatica if it flares up again. And, as always, she extolled the many virtues of using your ice bag.
Remember that none of this is a cure for your ET, but it may improve your quality of life. I am valiantly trying to stick to my anti-inflammatory diet, but I have to say that a run in with a bag of caramel corn this weekend kind of blew that.
Be well!
A couple of observations....While my numbers are "under control" right now, I have been in quite a bit of whole body pain. I suspected this is from the ET, is this common? I find that getting my massages at the chiropractor's office is cheaper than most of the "retail" places in this area and I get a truly therapeutic massage. Come to think of it, I am long overdue. Flu shots. I have been told by my doctor that I need to wait until late October or November, as the efficacy of the shot wears off after about 3 months leaving me vulnerable during the height of the season. I know the one year I did get mine in August (2 years ago), I darn near died of the flu in February.
ReplyDeleteYes, I go to the chiropractor's office, also. Fortunately, they don't pressure you into treatment you don't want.
ReplyDeleteThanks for bringing up the issue of flu shots and timing. I'm waiting until Friday to get mine and will ask the pharmacist about it!
About full body aches, I don't know. Bone pain, not in the joint, can be a symptom. I do know that people who have full body pain in the bone may need to have hydroxyurea dosage changed. Something Tom report to your doc.
ReplyDeleteFor a good recap of symptoms, the Landmark study is helpful you can read about it here. https://ethrombo.blogspot.com/2017/08/mpn-landmark-survey-results-are-in.html
Please let us know what you find out.
Been a bit of a gap in updating it seems...the first year was fairly stable, with platelets ranging between normal and around 700-800K. Regular visits to the doc with dosage adjustments seemed to do ok. Then, starting about the middle of the summer, things just went crazy and we cannot get the numbers under control. My ET is complicated by chronic anemia, and we can't get that even close to out of the critical range since mid-September. Have had six units of packed cells since September, and if Hg doesn't go up by next week's visit, will be getting one more. The first year I had my head buried in the sand. Yeah, I had cancer, but it was the 'little c' and it was just a thing. I am no longer so blasé about it, as a good chunk of the time now, I am nearly non-functional. In the last 2 and a half months, the platelets have gone from being over 2 million down to 20 thousand, then back up to 1.2 million and now down to 100k again. I'm neutropenic and anemic, and on top of all that, I have a cold that if it weren't for the fact that there is no fever, I would swear was the flu. Ok, whine mode disabled.
ReplyDeleteThanks for updating us. What an awful time! Is your doc using HU? Would Jakafi or Pegasys be options for you? Whine away! Please let us know about the next steps for you.
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