Some help/reassurance please

Jennifer1295 · April 2012

Jennifer1295 · April 2012

I have been here over the years posting a lot more in the begining and then popping in from time to time, posting some and reading more. My LE started in 2002 after a mastectomy and node dissection. I have been through PT between about 5 or 6 therapist at two different practices/clinics. I learned MLD and went from wrapping, wrapping with foam and then to sleeves - although it took about a year to to get to the sleeves. Now my arm has never returned to the pre-LE size and my problem area is the forearm above the wrist to the elbow, including the elbow. But I have tried to keep the swelling down and eliminate the fullness feeling.

Any way I am finding the I am needing to do more as I seem to be having a flare up. I know how to wrap (of course need to order more/new supplies). Am working with a new fitter with a new night sleeve that was sent back with the thumb/hand area too short once already. She said technically I was too far out of the two week time period (about 4 to 6 weeks since I picked it up, although could not wear it for another two weeks due to a recent revision surgery) but she would contact the supplier to see how they could help as I have had the last 4 night sleeves made by the supplier and could not actually wear the sleeve. She also feels the area should be longer as well.

So there you have it. My short version of what has been happening. I have been reading the MB here and it seems there is a lot for me to catch up on. Here is were I turn to those who maybe able help - please...TIA

Galsal · April 2012

Hoping things gets made right for you about your new pieces.

kira66715 · April 2012

Jennifer, do you have a current, good, LE therapist? It sounds like you need to stop back in and be reassessed. I know you know how to manage this yourself, but it never hurts to have a good LE therapist's input.

Also, if you haven't wrapped for a while, a review might help, and also consider including some foam pieces in the wrap to address the problem areas.

LE just doesn't give up, does it?

Kira

Suzybelle · April 2012

Hi, Jennifer:

So sorry to hear your LE is flaring up - I have had to change my way of thinking about le. It's not something that I take care of and walk away...it's a never-ending, ever-changing process. Some weeks I have very little issues - other weeks, it's a struggle. And I have found that diet, weather changes, hot weather, extreme cold, not drinking enough water, a cold or other infection - they all place stress on the lymphatic system and affect my arm and make it swell and hurt.

Besides wrapping, working with an le therapist (a good one) and getting exercise, there are other things that really help me as well - nuerontin (prescription), volteran creme (prescription) in the summer, Solaris Tribute nightsleeve, flexitouch machine, wrapping...and I have to mix it all up. It seems like my le gets conditioned to a certain program and then I have to shake things up again, either with changing up how I do stuff and when, or going to see my therapist for some intensive MLD sessions. By intensive, I mean she does it for 30 min. or so - I am horrible at MLD.

Hang in there - I try not to get too down about LE. Everybody has something they have to deal with...some folks (and some of them are on this forum) have multiple issues that they deal with and do it with such grace! I try not to let le get in the way of what I want to do. If I want to hoe the garden or weed, or cook a bunch of stuff, I just have to make sure I'm smart about it - and that I drink lots of water and don't overdo. Same goes for exercise - I walk in the a.m. before it gets so hot, or I bundle up and make sure my arm doesn't get too cold.

And the wierdest thing is, when I don't get enough sleep my arm freaks out - I am prone to insomnia and if I get less than 5 hours of sleep, I am guaranteed to have a tough le day the next day.

Whatever. LE is so stupid. That's my official opinion on it. Laughing

Hang in there!!!!

kira66715 · April 2012

Suzy, with you on the sleep issue. Lack of sleep raises cortisol levels and all sorts of stress hormones.

For years, I was sleep deprived because of my work, and I look back and I'm horrified that I did that. No one should expect to work 48 hours with no sleep on a weekly basis.

Shift work sleep disorder is a medically recognized conditon now.

Kira

Jennifer1295 · April 2012

Galsal, Good news the fitter called me and the supplier is going to remake the night sleeve - it is solaris tribute. I was happy about this.

Kira, I need to check and see about the LE therapist in my area. I am thinking back to the hospital/clinic as I think they might be a better fit. Although there is another place I have not been to as they are hard to get an appointment for.

Suzy, I never thought about not getting enough sleep. I know I need to exercise and drink more water for sure. I know what triggers most flare ups and try to be careful but I guess some times it happens for no reason. If you don't mind me asking what are nuerontin and volterin cream used for? Not sure about the flextouch machine either.

Please every one continue to share and respond. I have a feeling I will be hanging around more often now.

inspiewriter · April 2012

It makes sense about not getting enough sleep--they now say that makes us gain weight too.

Binney4 · April 2012

Jennifer, good for Solaris! They are good about customer relations, and besides they've been hearing a lot lately about the hands being too short on their garments. Wink (Ahem! Thank you, Kira!) Hopefully your re-order for the same complaint will help give them pause for thought. They do seem to be anxious to get it right, so your input is valuable and has some chance of being useful in changing the way their garments are made. And that will benefit all of us! Smile Together we really CAN make a difference!

We don't talk much about amount of sleep in relation to LE control, but that and stress both seem to play a role in how LE behaves. Sure does for me. Tongue out Thanks for bringing it up, Suzy. (And the crummy part is, insomnia seems to be all too common after bc treatment.)

Keep an eye on the bandage suppliers for seasonal specials -- it can reduce the cost and/or give you free shipping. They seem to have specials for every occasion, so there should be something coming up shortly. When I was first diagnosed there was a local woman who became a bandage supplier out of her own home. It was amazing to be able to go there and see and feel all those products, compare brands and go home with them the same day. Kinda took over her house (not to mention her life), so eventually she closed it down, but it was great while it lasted. Too bad we don't all have somebody like that close by! Undecided

Welcome back, Jennifer. Kiss Please do keep us posted!
Hugs,
Binney

Suzybelle · April 2012

Hi, Jennifer:

Neurontin is a pain med. that is non-narcotic and is actually given for shingles pain - it's a nerve blocker, I think? Volteran is a cream that is a pain reducer that is used a lot to treat arthritis. In the summertime when my LE flares the worst, it saves my bacon. I love the stuff.

Binney - I've been talking with kira about my insomnia issues- they're awful right now. I'm getting 4 1/2 hours of sleep on a good night and literally stumbling around during the day. I've taken myself off of arimidex and my asthma meds. to see if this will help alleviate the sleep situation...it has steadily gotten worse over the last 4 or 5 months.

It's a good thing I don't mind acting like a zombie. But if I start dragging my feet around with my mouth hanging open, my hair standing on end, and my arms out in front of me, I 'think' my husband might leave me. I dunno. Undecided

Binney4 · April 2012

Suzy, have you tried any of those ideas the sleep-specialists keep harping on? Most of them didn't do much for me. The only thing that finally worked is the one about getting up if I'm not asleep in 15-20 minutes and doing something until I'm good and tired. They also say warm milk is good, but I find Mexican hot chocolate is even better. Wink Okay, okay, it has caffeine in it -- but if you can't sleep you need SOME comfort!

Hoping you soon find the perfect combination of rituals that works for you! Undecided

Hugs,
Binney

BeckySharp · April 2012

Suzy-- I was having sleep issues until I started going to bed at the same time and getting up at the same time even on weekends. If I vary those times I cannot sleep. If I sleep in late on a weekend day I will not sleep well that night.

Anonymous · April 2012

I have been struggling with sleep issues since I had my implants and chronic pain. I got all off schedule and would hate to get in bed because I knew I would be uncomfortable and toss and turn. Well, not going to bed won't get you to sleep either! Duh. I just never got myself back on schedule after my implants were removed. I have been trying over the last two months to do exactly what Becky is saying. I have a friend who works in a sleep lab and she told me that is the first thing to do. I was doing well for a while, but when I was in DC for Dr. Massey's conference and had that 24 hr bug and slept for 16 hrs straight, I got my schedule all out of whack again. So, here I am at 1:10 am when I just posted in the Exercise/Self Care thread that I was going to bed. Anyway, I just wanted to say that while I was staying on a strict routine, I had a much easier time falling asleep and staying asleep. And while I have been meaning to bring this up on the other thread since we were talking about how lack of sleep effects LE, I have noticed that it also affects my, um, daily constitutional. Lack of sleep sucks, so I really feel for you, Suzy. Okay, now I am really going to bed!

Some help/reassurance please

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