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[Adia]

Moderators please move this if I haven't posted this in the correct area...this seemed like the best place to start

My name is Julie. I am turning 27 this year and this will also be 10 years that I have been living with Lymphedema. Mine is primary, and in both feet. I have managed to keep it pretty well controlled with diet, exercise, and unfortunately denial, but i have noticed as I get older i have to do more. The denial came from 3 years of NOT knowing what it was, there wasn't a doctor i saw that could tell me. They thought gout, but a 17 year old girl with gout was so unlikely. I finally stumbled upon a podiatrist that said it is Lymphedema Precox basically stated Precox was because it started before I turned 20. He said there was nothing that could be done and not to bother going back to him.

Now after all of the research i have done, i know there are things that can be done. While mine is not SEVERE it is moderately painful some days and I have gone from wearing a size 8 shoe to a 9 and 1/2 wide. I have been very lucky so far, and hope to continue on a path that will keep this from taking over my life. I have 2 kids and love the outdoors, and I don't want to ever have to tell them that we can't do something because of mommies feet.
I want to thank everyone for all of the wonderful information here and if anyone needs me just holler.
thanks again
Julie

[Marguerite]

It always amazes me when I read about a doctor who can identify lymphedema but then doesn't know what to do to treat it. Hopefully you have found a good lymphedema therapist, who will treat you properly to maximize the things you can do. Of course you will also need a doctor who will write a Rx to refer you to the therapist for evaluation and treatment.

At least now you know that there are lots of us out here suffering from the same problems! It is nice to know that others are will to share and to help.

Marguerite

[Adia]

i have seen a specialist, it was last year. He gave me compression stockings and sent me on my way. They were custom fit 20-30mm compression and after 2 days in them i had to call that quits. The pain in my knees and hips was so bad i could barely walk.
I don't know if it would help anyone but i do have some tips and tricks i have learned over the years to keep the swelling as low as possible...i am sure most are already known by a lot of folks. but if anyone would like i can post what i have learned works for me and see if it helps anyone else.
thanks

[didi77]

I've just been diagnosed so any tips will be helpful!! I go on Monday for my evaluation with the therapist. It's been very fustrating to say the least because NO doctor has found this...I pretty much did the reserch myself!! 2 yrs ago, I had a complete knee replacement and my incision got infected...wore a wound vac for 3 months and my pain level has been terrible ever since...not to mention the swelling has been bad! I've even been seeing a pain specialist for the past year 1/2 and have tried every pain med out there ... with no help!!! This has been a very expensive journey. I finally had to close my business...after 25 yrs I'm a hairstylist and just can't stand OR sit and make a living!! My doctor is getting me ready for disability. I have other health issues too....fibro..osteoarthritis....ect. I need my other knee replaced but am so afraid right now. I pray alot and I'm sure God will guide me...like he has done so far.
Have a great day!
Diane

[Greg]

I am always amazed at how many posts there are here from folks who have developed secondary lymphedema after a knee replacement. What I find so strange is that you never read about this as a risk -- and I'll bet your doctor didn't mention it to you either.

Sorry to hear you have to go on disability but at least you have a doctor who is willing to help you. Good luck with getting your good health back.

Greg

[didi77]

Thanks greg,

nothing was ever mentioned when i had my knee replaced and further more...when i was going to the would clinic...not a thing was mentioned there either!! Very sad just because i'm over weight the dr's assume it's because of that and i retain fluid!! Not!!

[LarryC]

I' got LE of both legs after my bilateral TKR's. It's now moved on to my groin and you can imagine what I go through at that location. Let's just say I'm not much of a man and I'm seriously depressed. Dr.'s don't seem to know what LE is all about.

[guit30]

I had Baker's Cysts in both of my knees, that is where I am told, that my Lymphedema (secondary) came from, makes sense, Now I am having bad knee pain. I have no insurance,so I go to a clinic, my doc there tells me I don't have Lymphedema, it is venous stasis. Oh Well

[LymphedemaGirl]

Originally Posted by Adia

i have seen a specialist, it was last year. He gave me compression stockings and sent me on my way. They were custom fit 20-30mm compression and after 2 days in them i had to call that quits. The pain in my knees and hips was so bad i could barely walk.
I don't know if it would help anyone but i do have some tips and tricks i have learned over the years to keep the swelling as low as possible...i am sure most are already known by a lot of folks. but if anyone would like i can post what i have learned works for me and see if it helps anyone else.
thanks

I am always interested in learning about others tips and tricks, please post when you have time :-) Thanks you for sharing.
I hope you haven't given up on compression stockings. There is a lot that can be done to make them fit each person individually. I could not do without mine, they really help a lot and in many ways I can live my life as before, though there are things I no longer feel like doing (beach, sandals etc.).

[guit30]

I am having the same problem. I have sharp pains in my legs and knees where my lymphedema is. I had been wearing Knee hi 30-40 lbs comp on both legs. I have tried different brands, lower compression, but nothing works. I am on disability and do not have any health insurance, I just got turned down for medicaid again, too much money in the bank after I got my big disability check. The doctor I see at my clinic does not think that I have lymphedema, He thinks that it is Venous stasis. I can't afford to see my vascular doctor who diagnosed me with lymphedema.

[john d]

Originally Posted by Adia

i have seen a specialist, it was last year. He gave me compression stockings and sent me on my way. They were custom fit 20-30mm compression and after 2 days in them i had to call that quits. The pain in my knees and hips was so bad i could barely walk.
I don't know if it would help anyone but i do have some tips and tricks i have learned over the years to keep the swelling as low as possible...i am sure most are already known by a lot of folks. but if anyone would like i can post what i have learned works for me and see if it helps anyone else.
thanks

Hi Would like to see whatever you hav that works. Just starting with stockings and am working with a physical therapist. Having had surgery and then radiation I am prepared to experience a fair amount of swelling. So far its been "moderate" Thanks

[loreau]

lol - well it is good to know i am NOT alone -
for 7 years my dr told it is Fat in your ankles walk 30 min a day eat 3 meals a day and loose weight -
i told him - so many times its hard to walk when my feet feel like lead or bricks
finally this july i found a NEW dr - in sept he got xrays of legs done
xray of low back spine - and ultrasound of leg right leg is 10 cm larger than left -
we tried water pills for 3 weeks lost 8lbs he took me off them - he didnt see much of a change in the swelling -
he had sent me to get compression stockings the lady there would not sell them to me she was afraid the compression on left leg would be too much and might cause a blood clot - so she told me to call foot and wound clinic - they wouldnt see me unless dr refered me - so took time off work to see dr for 10min get him to fax a letter to see me - they tell me i wont get apmt till dec or jan - because they see diabetic people first or open wound people first --
after i got the news on monday this week i have degenerative bone disease in lower back and not to lift anything over 10lbs for 2 months - - i went to work and had a very slow work week -so i googled my area and in the province / city i live in a lady started a lyphedema assocation - she told me to call the cancer clinic the lyphedema program gave me a contact name to call - that person is away on vacation till dec - so on her voice msg she left a name on it and i called her - she faxed me 8 certified lyphedema specialists and i called one on wed - got apmt tomorrow friday 12 oct 10am - not sure what to expect - but from what i understand she can do the lymphatic drainage (which is what i been getting done all summer long - i didnt know what i had till september ) she can do the bandage wrapping and the leg assesment - in the afternoon after 2 yrs on the waiting list finally got apmt on fri afternoon for the sleep clinic -- not sure what to expect there either -
when i seen my dr last evening wed nite - he was shocked that i got that list of certified lyphedema specialists -- and i got my letter of him refering me to her - yipee -
what i found works for me and myleft leg isnt so swollen is 2 advils - and
soak a cloth in white vinegar and warm water squeeze it out - wrap around leg and then wrap saran wrap around it - leave on 4 to 6 hours - boy it sure feels good after -- not so heavy - -something in vinegar i dont know what but it seems to help alot
i just want to see my ankles - one day --

going on a cruise nov 21 to new orleans (8 hours flying) eek and then on caribeean cruise - i dont want to be dragging my left leg along - . i want to be able to walk -more than a block without having to sit down cuz my back hurts

all dr said about back is do back exercises --
just because i'm over weight the dr's assume it's because of that <<< yes that is what my dr i had for years said he would look at my ankles and say its fat

i am so angry at myself for believeing him - i think my situation is somewhat my genes / my fault .. i gained weight in my 30s now 52 -- i was 135 or so then now 250 or 260 depends on the day -- i did try to loose weight earlier this year it just came flooding back on me -- i try to drink water - and even on the water pills i didnt seem to go to the bathroom any more than usual
i sure hope its not my future -- my mother her mother all had huge legs and no ankles .. but they were not as heavy as me at the age i am now ---
so dr said -- dont want to burst your buble but this is a lifetime comitment -? o god i sure hope not
i never had this when i was in 20s when i was 135 .lbs ..

i do think it has a lot to do with weight - and of course diet - and exercise ---
so thats my story --

[jannd]

My primary said I had lymphedem about 4-6 yrs ago but knew nothing about it and didn't seem motivated to learn. I just turned 70yrs old. I took it upon myself to research and was contacted about a pump. They worked with my Dr. to get insurance to pay for it but I got no training on how to use it except some material they sent me. This was about 4 years ago. After reading about pumps on this site i don't know if I have been using it correctly. There has never been any followup from the pump company. I recently contacted a physical therapist the specializes in it and will soon start therapy. She says I have primary lymphedema and lipedema. Sure could use info on all this. Thanks for letting me vent and any info.