GRRRRRRRRR I HATE LE..........
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Yes, you'd think this guy would be teaching me how to do all this. If not for this site, I wouldn't have known any different. I'm not real sure how to change therapists. I'm in the Tampa Bay Area, there has to be more than him around here? I just wish the sleeve was here, my arm is bothering me
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Yes, it's unfortunate, but this field breeds a lot of charlatans and snakeoil salesman. I know there's got to be some caring therapists out there who are doing this to help people, but the bad apples seem to surface more. I think these therapists think, "Well, I've had 4, 6 years of school already, and this two week lymphedema course is sniveling compared to my real schooling." Then these people work under the radar, with no real accountability or standards, then they get an ego, (How dare you tell me I'm not doing such-and-such.)
Just not a good situation, we need stricter standards and accountability for these therapists.
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Thank you proud!
I'm no expert, but I surely would be happy to be an advocate.
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Spookie
You may want to all the manufacturer about your sleeve.
My fiter swore she ordered my sleeves , but she sat on it for over 4 weeks. In my case, I was lucky that it was LympheDIVAS. They looked into it, got the order faxed in for me and shipped it - all within a few days once I alerted them.Good Luck.
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well I am glad I have not needed a sleeve yet, but know that with this gang of pushie people, I know where to go for the junk
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I got a call from Christina last Fri, informing me my pokey HMO finally approved, details about copayment , etc. these garments are custom made in Germany so it will take some time. Slow boat to Chicago I guess? LOL
This PT guy in another life was an IT guy. Was talking to somebody, decided to become LANA cert. apparently had no PT background. Less stressful job for him. He's been at it for 15 years. Still doesn't make it right.
I'm going to wait till I have the sleeve, then look for a new LEist. Maybe Moffitt, if nobody on my side of the bay. FlWarrior sent me instructions how to do MLD, can print tomorrow.0 -
Spookie, I get the idea of someone doing a life change, IT to LE therapist may be one of the more unusual changes. I have looked into getting certified myself for LE therapy but it is not realistic given my own LE. Times one just needs a change in life~
Try not to hold it against him unless he really isn't doing the job for you. Or is harming you by not doing it correctly.
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The last two times I wore my Juzo sleeve I think I had a reaction to the elastic at the top of the sleeve and at the wrist. My arm around the band was all red, raised skin. A bit icthy, but the red areas an went away in a day.
Anyone have similar issues? I washed everything but haven't tried wearing it again.
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Wasit tight at all? When if have a flare up,I get skin reactions. Otherwise, I don't.
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I bought a Sigvaris sleeve for the first time last year that gave me a horrible rash ... itchy, red ... I can't wear it.
I tried it again after giving it a good washing and it did the same thing. 0 -
Some of the sleeve imbed aloe and E in their garments. I'm sensitive to aloe.
One day without doing MLD, gained 3 lbs over night and feel like an elephant! Can't wait to get my night garments.0 -
I had a TERRIBLE reaction to a signaris I tried on. Within 30 seconds I was itching...snatched it right off and had a red rash. Washed my arm and used CALMING CREAM ( you can get store brands) Worked great. I did no accept the sleeve.
OHIO
Since you did keep this sleeve, I might try this if I were you ... use an Aveeno lotion ( AT LEAST a 1/2 hr before you put that sleeve on) and rub it in those sensitive areas VERY well<gently>. I really dont think it is advisable to use lotion and then just put a sleeve on. Having said that, I personally have used these types ( aveeno type store brand and/or calming cream) after a shower and WAITED to put my sleeve on. Then, I would try it for app an hr and see in your case.If you prefer, take advantage of the overnight hours and SLATHER yourself with a good cream or even A & D ointment -esp in those sensitive areas. We are after all, supposed to be taking good care of our skin.
Pls let us know what you decide.
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Just wanting all to know that I haven't changed my mind. I STILL HATE LE more than a thousand hot fires coming off the sun! Grrrrrrrrrr. I don't want to wear my shape wear either. Can't they make that stuff out of stretchy silk for coolness or something comfy like that. Something's gotta give!
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About the rash. First time - I had a 'clean' sleeve, and used Aveeno 30-45 minutes prior to sleeve use. Don't know when the rash started but it was there about six hours later. I often use lotion prior to wearing sleeve so this was normal use for me.
Two days later - wore the same sleeve, no lotion prior, for about 6 hours and had the rash.
Sleeve is not too tight - it is an older sleeve and comfortable. Fit feels very normal, no unusual tightness or symptoms.
Interesting. Haven't worn the sleeve since. So far all is well. Just got home from a 5-hour trip and need to do some MLD and water, but otherwise all is well. Hmm...... I'll post on the Aromaxin board to see if sensitivity to elastic is an Aromasin thing.
One can never say life with LE and aromatase inhibitors is boring.
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You can be swollen with lymphedema and not be red and hot, correct?? I had my yearly visit with my radiologist and he poo-poo everything I had to say about lymphedema. then told me the nerve pain, I have been being treated for (almost 2 years), was just a pulled muscle. Gave me some aquafor and told me to rub it and put ice and heat on it??? I don't think I will be seeing this guy anymore all he did was make me doubt what the LE therapist has been telling me. Then I came back to reality with the swell this morning and knew he had no clue..
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The answer to your first question Lymphgirl is yes. It's not uncommon for doctors to minimize or 'poo-poo' lymphedema issues. Likely because they often know very little about it.
Edit to add, red and hot can be indicators of an infection.
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hmmm, no red and hot but the arm is achie this morning, I know I was bad on Sunday as I sat in the hot tub for a bit and that seems to aggrevate things for me
you would think I would learn, hope I have this time....no more hot tub for me!
not red, not swollen but aches...
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I'm not red, just swollen and achey.
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I am not swollen and the LE therapist the last time said my aches were not LE ~~but thinking I overdid something this past weekend
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You can be swollen with lymphedema and not be red and hot, correct??
Of course. Sounds like it is time to ditch this one girl!0 -
I've never found its source (person or study) but I have read comments to the effect that we can have up to 30% more-than-normal lymph in our arm before visible swelling develops. An achy arm can most certainly be LE, and often, that's the only symptom for a mild case of LE. The International Lymphedema Framework identifies Stage 0 (or latent stage) LE as not having visible swelling. A feeling of heaviness and/or tingling are also common signs of LE, with or without visible swelling.
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hmmm, my arm hurt me on Tues and I was afraid I overdid the session with my trainer on Sunday or that the 5 minutes in the hot tub Sunday.... Realized last night that it was more likely as I lifted 2 30# boxes of postcards at work on Monday....dum dumb dumbo here.
no more lifting boxes at work! but arm feels better now, did lots of first pumping in the air! scarey as I really do not want to end up swelling which I do not have as of now
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Get to see the pain doc today - maybe he will counteract what the jerk did on monday.. At least this one listens to me and tells me "like it is", doesn't beat around the bush or pacify me.
proudtospin, I know how that goes with boxes. You just don't realize you are doing it until after the fact.
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Lymphgirl, so now I have a really good reason to yell for one of the guys at work to move my boxes! No more overdoing things for me! Then again, this past weekend had that dumb stomach flu thing so maybe all connected?
Hope your pain guy is a help, amazing how dif docs think!
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Finally had a decent therapy session where I actually felt like they listened to me. Just wish that these peope would get educated on the topic.
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Feeling weird for the last few days - I don't think it is because of the new med but my "good arm" has been tingling and real tense in my neck and shoulder. My DH checked the differences under my arms and said this arm is swollen and tight.. About 4 months ago I had the venous dopler done for some bumps near my bicep and everything came back clear. My PCP told me to treat it like LE but now I'm not so sure, with these new feeling in my arm. My sleeve hurts and makes the symptoms worse. Sleep doc has tried me on some new drugs lately, one I had to stop because of severe SEs the other I just started yesterday.. Wish this stuff would be easier for me. I'm sure this isn't related to the new med though or could it be? Does LE act this way?
Edit: - I've been Dx with mild LE in the trunk and upper arm
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Go see a qualifed LE girl and state the facts on your new symptoms to rule out bilateral LE. Can you measure your arm in the morn and then at night to confirm swelling and how much? Not sure what you got going on but I feel for you sister.
For sleep you are talking to the person that doesn't sleep. My specialist said go home and use the sleep pills everynight, that didn't sit well with me. One month later my naturopath put me on GABA and now I sleep about 6 hours straight through which is a big difference. I saw improvement within 4 days. He also put me on Rhodiola which is calming. I believe these 2 supplements have helped my sleep and I have tried EVERYTHING else in the book.
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Hugz, does either supplement interfere with hormone issues?
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About 4 months ago I had the venous dopler done for some bumps near my bicep and everything came back clear. My PCP told me to treat it like LE
Can you pls clarify this / On the ' good arm' or the LE arm ? I do not understand.
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Marple.Good question. I know they put rhodiola in natural menopause supplements. Not sure about GABA. I better run this by my Naturopath in case he messed up. Yah I sure don't want to growing estrogen posistive cells from the stuff.
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