Mood swings and exacerbations???

Nordy, Binney and I have discussed the existential despair that is associated with flares, and how it seems to us that while a flare is distressing, this response, which seems very common, is out of proportion to the reality of the flare, and we think there's some sort of biological connection--?inflammation and mood.

I found a chapter in an oncology text about "sickness" in oncology patients and how much of the ill feelings are mediated by inflammation.

Also, I once saw a physician for a chronic issue, and his theory is that our tolerance for symptoms is markedly less, the longer they persist.

This week, I saw my lovely, amazing LE therapist who measures me, and she found my upper arm--the place of no clinical issues--is edging up by millimeters--and I was distraught. And, and old cord in that area decided to flare. 

She called me yesterday, and I told her how upset I was, and she was trying to reassure me that it's just millimeters, and I do much more compression on the lower arm/hand, and it's smaller than my "good" arm--but it messed up my mood for the whole weekend.

Add me to the club of people whose mood is impacted significantly by their LE.

(I had posted that my rad onc dictated that although I claimed I had LE, she couldn't see it--not that she ever touched my arm--so maybe I'm just a malingerer.....)

Kira

Just yesterday I woke up with my hand all puffy...sent me into a tearful frenzy and I even posted on FB asking for prayers for peace and acceptance because my emotions were so far out of line from the actually issue.  I have stage 0-1 LE so it is mostly under control but when I do have a flare,  I am a weepy, emotional mess!

I too find my mood swings significantly when I am experiencing a flare or am even afraid I am about to flare.  I experience a lot of anxiety.  I think for me it is about control.  Having all the tools - (daytime sleeve and glove, night time sleeve, extra compression for night sleeve, self massage and exercises) following through with the plan discussed with my therapist and still having a flare raises my anxiety level considerably. I also find that I can become totally self absorbed and focused on my LE. I can deal with the day to day but a flare sucks! It feels like going back to zero and somehow failing.  I know intellectually this is not true but on an emotional level it is hard to bounce back.   I try and focus on the blessings of having a great therapist, an insurance company that pays 80% of the costs for my garments, a daughter who can bandage for me when I need it, and the ability I have had so far to bounce back from flares.  I think we all experience this differently but it does take it's toll at times on emotions.

Thanks for starting this strand.  Interesting.

Best wishes to all,

Cori

Cori, you said it so well--it's so hard to not focus on LE when it's acting up, despite all the care and time and attention we spend to control it.

I once wrote in an article on how it felt to have LE, that when there was a setback, I was despondent

Now, along comes Suzy, to explain this all scientifically--man, I am wearing protective eye guards when if I'm in Mississippi. 

Agree with Binney, glad we're not alone.

Kira

Suzy , you totally crack me up! Off to buy a jumbo pack of pens (extra fine point).

Cathy, this could easily just be normal post op swelling--just elevate the arm on pillows and gently pump your fist though out the day, and hydrate. and avoid stretching overhead for right now.

The ACS has a good page for post op exercise:

They say the first week--but with the information that lymphatics heal in the first two weeks, I think it's safer to adhere to this for at least 2 weeks:

The week (2 weeks) after surgery

These tips and exercises listed below should be done for the first 3 to 7 days after surgery. Do not do them until you get the OK from your doctor.

Use your affected arm (on the side where your surgery was) as you normally would when you comb your hair, bathe, get dressed, and eat.

Lie down and raise your affected arm above the level of your heart for 45 minutes. Do this 2 or 3 times a day. Put your arm on pillows so that your hand is higher than your wrist and your elbow is a little higher than your shoulder. This will help decrease the swelling that may happen after surgery.

Exercise your affected arm while it is raised above the level of your heart by opening and closing your hand 15 to 25 times. Next, bend and straighten your elbow. Repeat this 3 to 4 times a day. This exercise helps reduce swelling by pumping lymph fluid out of your arm.

Practice deep breathing exercises (using your diaphragm) at least 6 times a day. Lie down on your back and take a slow, deep breath. Breathe in as much air as you can while trying to expand your chest and abdomen (push your belly button away from your spine). Relax and breathe out. Repeat this 4 or 5 times. This exercise will help maintain normal movement of your chest, making it easier for your lungs to work. Do deep breathing exercises often.

Do not sleep on your affected arm or lie on that side.

And avoid Suzy and sharp objects when things are dicey.

Kira

Chiming in with moodiness associated with puffiness.  I had forgotten of the correlation, and was SO frustrated that I could not get my back to clear last week until I made an LE appt for someone else to work on it.  WIthin an hour of that amazing appointment, all my crabbiness, tenseness, and anxiety disappeared.  I had to call the therapist to thank her for her magical hands.  I felt like I could breathe again....and it was all connected to a flare in my back/trunk.