GRRRRRRRRR I HATE LE..........
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OH Kittydog - I had the same bug and it made my asthma come back after no asthma spray for over 3 years... Please take care... I made it 2 weeks before I put my sleeves back on, but did partial MLD all the way through..
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Why cant we do MLD or wear a sleeve if we get sick ?!
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You can purple, it's just that sometimes you're too sick and tired, and don't want to deal with it. I would hate to wear my sleeve if I had a fever.
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You also don't want to wear your sleeve if you are going to be napping...
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...unless it's a night garment.
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Kitty I don't do MLD at all but I do LEBEDS at least one a day unless I am distracted or sick. When you are sick you usually will feel your LE more. I just got over the dreaded cold and I had a wee bit more swelling too. Lots of us experience this.
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I just haven't felt like the MLD. I am coughing my head off till I get sick. I have done a lot of sleeping too. I only have the tribute for my arm nothing for the legs until I meet my deductible. Then we are going to meet with a Solaris rep and let them decide if they can help my weird shape legs. So you motivated me...I will do my MLD tonight if it is just the arm.
Stay well and away from the public. I went out twice last week. Friday to eat lunch with my mom and Sunday to get fireworks for New Years Eve. I started with chills 10pm Monday. Three hours later I quit shaking and had temp 102. Dr. was very surpised it wasn't flu because I also had the body aches. The flu and flu like bug are horrible in the South this year. My advice again stay home!
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Thanks Linda
I am getting a nasty cold which should be blossoming into my COPD lungs very soon (UGH) I just know this scenario all too well. Good to know I can still do the MLD etc ...IF feeling up to it.
HUGZ
May I ask why it is you choose not to do MLD? I guess my question is this : " Do you feel that MLD and Lebeds are essentially equivalent <to you > in terms of LE mngmt ?" I am very curious, if you don't mind.0 -
I'm experiencing a problem with my new Reidsleeve. First night I wore it for two hours. The second night, last night, for five. Both times my upper forearm (just below the elbow) has become sore. I think it's the muscle that's sore but not from LE. It seems the position of my arm, unable to move, plus the compression on top on that area is causing the problem but I don't know what I can do about it. I'm used to being wrapped, it's not been a problem with that.
Does anyone have any suggestions? I'll call my fitter on Monday but meanwhile I'm hoping someone can help.
Thank you so much.
Marple.
(Darnit, I meant to start a new topic but I guess it is a GRRRRRRRRR moment.)
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Marple - When I first got my JoviPak sleeve I found I was sleeping in a funny position which made my arm and shoulder hurt, it took me a few days, but I found a position that worked so that I didn't get the pain. The Reidsleeve looks even more bulky, have you tried loosening the velcro in that area a little bit? I'm just guessing because I haven't worn one of those before - also, maybe ask Binney, I think she was commenting on those the other day.
Purple - I would think that doing the Lebed opening or MLD might actually help you out when you're sick, the Lebed more so because of the deep breathing, which seems like it would be important with COPD. Just don't overdo!
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Thanks, Linda.
Yes, I defintely will be doing deep breathing as well as exercise. I just wanted to be certain there was no contraindication.Thanks for looking out for me !
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Thankyou Linda. Yes, I'll try it tonight with less compression. I just have to be careful not to push fluid down. My forearm so far is not the problem area. Sheesh, the fun never ends with LE. :P
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Random question
Figured the GRRRR thread might be ok to post it on . IF NOT , you can all Grrrr at me today !
I have seen ppl suggesting acupuncture for LE. I would never dare because of the needles- although I have had and enjoyed the benefits of it app 7 yrs ago. So, I do believe in the benefits of accupuncture for certain ailments. I dont like to see BC pts talking about tattoos or acupuncture or <unneccesary> needle pricks of any kind - even on the unaffected side, but that is STRICTLY because I have LE of course ! I confess that I'm just not objective when it comes to that .
I recently read an article about ACCUPRESSURE and LE.
My questions - has anybody tried it ?
Thoughts ?0 -
Purple, if you use the search button under the LE forum there are a few comments.
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Will do! thanks , Marple.
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Purple, I don't do self MLD because my LEist said lebed opening would be good enough for me at my early stage. But that was long before my trunk got mild swelling so next time, I will ask about her showing me.
I think one time she said that MLD is equal to the lebed,opening exercises. I can't wrap my head around that though, what do you girls think? Does lebed opening do the same thing as self MLD? What are your experiences when you do either or both?0 -
Does lebed opening do the same thing as self MLD?
Nope...not in my limited experience . That hands-on really made a differnce IMHO. I see Lebed as a stretching exercise with the usual deep breathing which is a nice adjunct to MLD.
JMO
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Feeling very depressed tonight and didn't know whether I should post at all... When I saw my pain management doc (didn't tell you earlier) The nerve pain gets so bad when I do any exercise or motion with my arms... He said at this point, we might need to do something else OR just accept that the nerve pain is probably going to be with me for life... he did up my med in my pain cream to try that, but the only other option he sees (but hasn't mentioned until now) is a neurostimulator that they put into your spine to fake out the senses where the pain is.. they try it for a week and if it works, they implant the stimulator. He says he usually does this for other rib pain but hasn't tried it on a patient with nerve damage in the breast... I took home the info but it is a futile idea because I can't pay for it... way too expensive. My nerve pain in my breast has flared tonight... maybe it is the LE in the breast, or maybe it is thinking about my mammo on tuesday.. but I feel so lost and alone... no one seems to understand the pain I have plus the added frustration of finding a apnea mask that works and seals... I just feel so overloaded I don't know what to do... Love you ladies and thanks for letting me vent.. I might be going through withdrawls from no LE T - he released me to do things on my own, but when I'm in the state I'm in, I just don't want to do MLD, or anything... ok done for now and I won't disturb you again, any time soon.. *HUGS* I think I need lots of hugs.
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GmaFoley,
I wanted to ask you if when you read other posts where we share our less than positive thoughts do you feel we are bothering other posters? Well we don't feel bothered by you either. This is our forum to share our thoughts and feelings whether positive or negative so please keep sharing. I am so sorry for your pain and sending hugs and best wishes.
Sheryl
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GMA: I just said to my husband a few minutes ago that I couldn't understand how people with LE could have this pain 24 hours a day. It doesn't seem right. I am so sorry that u are suffering. I hurt everyday despite all of the bells and whistles. I hope that u are on something for the nerve pain. I am thinking that my gabapentin is not working as well as it was. Don't give up on the mask. There is one out there that will fit. Many hugs to you. Beatmon
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GMA--hugs darling...its ok to tell us anything ...we sooooo get it
Maggie
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Beatmon, I am on gabapentin and I know (because I backed off it) that it does work. Doc wanted to up it, but I'm already having major brain fog. Thinking I'm at my max. I might call him tomorrow and ask if Might raise bedtime dose slowly.. I just don't know what to do..
I go back to have my CPAP data downloaded tomorrow. I will take th mask in too. Then on Tuesday I have the dreaded booby squash
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Thanks for helping me think this all out. Keep your thoughts coming.. I just can't stop crying. That surely won't help the mask seal tonight,0 -
(((((HUGS GMA))))) Other than the cost, have you considered having an MRI instead of a Mamogram? The pain is real and I can't imagine having it squished. Some nights my legs just hurt and feel like I am on pins and needles. The arm does it some but not often. My nerve damage is major too. I don't take anything because I couldn't deal with the fog. If the current flare doesn't calm down I am willing to try it again. Good Luck and as said before we are here to listen.
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I hate LE. I hate that I can't find someone who knows about it enough to help me. I hate that i cant find someone to help find decent sleeves. I just bought two new ones and they dont have the rubber at the top, so the curl down and pinch where I hurt the most on the arm. I wore one, I hope I can take the other two back. I have to pay for them myself and that is a lot of money to waste.
I hate LE for all the women and men who can't get decent care, afford medical treatment for it.
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Cinnamon, I heard some ladies plus my LE T that said there is an adhesive spray you can use to hold the sleeves up. I haven't tried it because I'm allergic to adhesives. You might want to look into it.
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Isn't it funny how we are all so different? I'd do 12 mammograms before I'd volunteer for another MRI. I'm big busted and a mammogram isn't bad at all. But the MRI? Hands down the worst single part of this bc experience. I was in tears by the time they let me out of their tube of terror, I was sore for weeks...
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I hate the fog! I wonder sometimes if there is something wrong with my brain, but then I forget it!
Hopefully u will find a mask that seals soon. My hubby tried quite a few before he was satisfied with the gel. He also wears a chinstrap. I always have had less leaking than him, so I guess it just depends on our facial shapes. My daughter cracked up in laughter last night when she came into our bedroom: both in cpap and me in a jovi chest and the big blue jovi arm! Don't give up, the cpap does help. Beatmon0 -
Cinnamon: I have been using the jobst It stays. I have been lucky with no reactions. It has changed my life. Beatmon
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Cindy, I'm with you on the MRI. My 3-in-1 biopsy had me in the MRI for 5 hours, with minor out-of-the-tube time for repeated attempts to adjust body and needle positions. I know they were competent, but after a time I was beginning to think that Curly, Larry and Moe were trying to do the biopsies. Give me a mammo tech any day of the week. Of course, that's all behind me now, and after reading gmafoley's issues, I count my blessings.
Gma, does deep, yoga-type breathing help you deal with the nerve pain at all? I'm wondering if there's a distraction technique you can learn, to give yourself periodic breaks from the pain.
Cinnamon, your frustration is all too common. I'm sure it's no consolation, but you have lots of company in not finding good, affordable care and garments.
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Cinnamon - have you checked out the LE websites to find a good LE therapist? I know it's hard to find a fitter, I drive 200 miles each way for my fittings. I have custom Juzo Expert sleeves, had them last year too, they are great, comfy, actually not too warm.... But it took me several tries to get a fitter that was good, at least for me. I'm just lucky that I have a good LE-T close by, rather rare considering where I live - timbuktu, Oregon
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