What is this?

Mary Anne in TX · 03-26-2007, 06:30 PM

I did my last radiation (28 in all) on March 1. I did radiation well, some toasting, but otherwise things went really easily. I thought I had just sailed through. About 2 days ago my neck on the right side, lower head on right side, and right arm began to ache and ache. All radiation on right side.
It just got worse. I had some pain meds left from my surgery; so I took one to relieve the pain. But I can't figure out what it is. I see my onc on Friday so I know that I can ask him, but it seems strange. My arm has not swelled nor has my hand, etc. Could this be lymphdema?
The other element wrapped up in all this is that I am doing my taxes and that is soooo stressful! Maybe it's just stress and it hit my weakest point.
I'd surely appreciate feedback if you have an idea and a bit of time.
Thanks a bunch. mary anne

Bev · 03-26-2007, 08:21 PM

Are you right handed and using a mouse to do taxes? My neck and shoulder hurt lot's when I use the mouse quite a bit. When I can't stand it, I use a taller chair. It gives me some relief. Ask your onc and also try to change your computer set up. BB

Mary Anne in TX · 03-27-2007, 04:20 AM

Thanks Bev!

I've lived on my lap top for the last week. I'll bet you're right! I'll switch something and see if that helps. mary anne

dawn · 03-28-2007, 03:55 AM

Mary anne,

I hope you're feeling better now, I had some pain on my radiation side just after and then it eased up. Haven't had a problem since. Its been 4 months since I've finished my rads and have been doing Herceptin since then. Just reached my one year and NED. It's getting easier to deal with.

But I have a question, could I copy your avatar to my desktop. I think its a beautiful easter theme.

Good Luck

Dawn

Mary Anne in TX · 03-28-2007, 05:32 AM

Copy away Dawn! And thanks for your reply.

The pain in my upper arm and front right neck and back of my head stays in pain; so I figure it is from the radiation. I'll ask her tomorrow! I'm ready for some relief!
Have a great day! ma

hutchibk · 03-28-2007, 12:34 PM

I have been diagnosed with zero grade lymphedema in my right trunk and right arm. I have no swelling, but I did have aching, aching, aching. I found a lymphedema/wound care doctor here in Austin who I went to. She prescribed a month worth of lymph massage with a PT in the rehab clinic (2-3 x per week) and for me to be fitted with a Jobst 20/30 compression sleeve. It has been 7 weeks since I first went to her, and I am about 95% better. I learned that you don't have to have swelling for it to be lymphedema... aching can indicate the earliest occurance and even though it can't necessarily be cured or reversed, it can be easily managed. I learned how to do a degree of self massage to retrain and assist the lymph system on that side of my body and some helpful exercises that also help. I also learned to steer clear of high sodium in my daily diet as that can exascerbate it. Also, I learned that I need to try and not sleep on my right side at night as that ecourages fluid to collect on that side of my body and increases chance for swelling and pain... I wear my compression sleeve almost every day. I learned that it is not so much designed to keep swelling down as much as it is designed to put a light, consistent pressure on the top of the skin to assist the muscle underneath the lymph system act as a "pump" whenever the muscle flexes. The "pump" action assists the lymph system to flow more efficiently.

(I apologize for my novice attempt to explain the medical mechanics of what I learned... I didn't sleep at a Holiday Inn Express last night... ha!)

Mary Anne in TX · 03-28-2007, 02:21 PM

You may have missed your night at the Holiday Inn, but you surely helped me. Nothing I take seems to take away the pain and I just couldn't figure it out. I did have chips last night with lots of salt on them. We don't use salt at the house, so it was about a month's worth to me. It goes from my shoulder to my elbow and across the top of my right chest (clavical area) and up my neck. The worst is probably across the back of my head. It was better yesterday until I ate those chips. I do so appreciate your feedback. I'm exhausted from the non stop pain. Did you take anything for that? ma

hutchibk · 03-28-2007, 05:22 PM

I seemed to get mild relief from motrin, but not for long... It was definitely a matter of getting in with a lymph PT and getting a jump on it from several angles... massage, compression sleeve, reduction of salt, sleeping different and exercises. And learning that I will need to stay on top of it from now on. No getting lazy or the achiness will return. If I am consistent, I can prevent any swelling, which I hear is much more painful!

Oh, my lymph doc and lymph massage PT asked me NOT to get deep tissue massage! They both said that it can "bruise" (for lack of a better word) our delicate, overworked lymph systems, which are having a hard enough time trying to work efficiently as it is. So, I confirmed with them what kind of massage I can get (outside of the rehab PT setting) and they said basically "between the earlobes and the bottom of my ribs, lymph massage only" by a therapist with solid lymph training. I can have the deep tissue massage on my booty and legs.

Also, my lymph doc is pretty conservative about how gentle to be with the affected arm. She suggests not carrying anything over 10 lbs. with that arm, including lifting weights for exercise. Also, she wants me to wear my compression sleeve most days (especially at work, I am a hairstylist) and ALWAYS when I am flying on a plane.

Mary Anne in TX · 03-28-2007, 05:42 PM

I know that consistency is the key! I had stayed in San Antonio while doing rads and I was so good about my eating, drinking water, walking a bunch, self massage arm etc. Then I came home to Rockport and "fell off the wagon"! I'm getting what you are saying loud and clear. I'll get my rad onc to refer me to someone for the compression sleeve. She is great and cautioned me that I might have the lemphadema problem. thank you for your help. Just knowing what is happening has relieved my mind. At first I was seeing strokes, etc. Oh, how Mr. Fear can get ya! thank you again. ma

hutchibk · 03-28-2007, 08:32 PM

I hope this is able to help, Mary Anne! I am just so relieved that it helped me. I got really worried when the pain that used to be limited to my underarm area after mastectomy started to move it's way down my upper arm to the elbow and then a week later down through my forearm and wrist. I thought that for it to be lymphedema it had to have swelling along with it. I didn't know what to make of it and of course I imagined all kinds of things. I feel lucky that it was only mild lymphedema. How weird is that? Feeling lucky to have lymphedema... LOL. There is so much to learn and keep up with on this journey we are on...

Mary Anne in TX · 03-29-2007, 02:05 PM

Well, guess what! It has turned out to be shingles. I'm spotted all on the right side and that is where the pain came from. I just got back from the doc. and she gave me lots of potions to relieve the pain and fight the virus. I'm waiting not so patiently for those pills! She gave me a shot before I left, but it hasn't kicked in yet. What a deal! Oh, well. Next adventure! Love to all, ma