Blue fingers with lymphodema

epete · December 2008

Has anyone with arm lymphodema experienced blue fingers? I have lost the use of my hand and arm

with the onset of lymphodema. Further, I have a badly frozen shoulder so mobility is limited. Last year I did Vodder-method lympatic massage 3x's week - it did very little to improve condition. Now I use the Flexi-Touch machine and cannot determine if there is improvement. I'd like to kow of any experiences with fingers turning blue.

Welga · December 2008

Hello,

I also habe the frozen shoulder and pain in the arm and under the collarbone, it's on my BC side were nodes were removed. I have a cold hand, not blue but cold. I have had the Vodder method too and am a year out of it and without seeing any inflamation I can feel the pain. The worst is the pain under collarbone. I can barely use my arm, good luck,

Welga

juliebb · December 2008

You should let one or more of your doctors know that your fingers are turning blue. I'd certainly get at least 2 medical doctors opinions on this. If the first doctor doesn't seem to be concerned when you inform him/her, I would ask another for sure. I might even go to the emergency room if I were you.

Sincerely,Julie

kira66715 · December 2008

Epete, blue fingers can be due to many causes--Raynaud's phenomena, too much compression, and possible nerve damage. There is a thread on the lymphedema forum about brachial plexopathy--it's progressive nerve damage that occurs after radiation. You might want to read it. Also, there is a syndrome of reflex sympathetic dystrophy where the body creates an unrelenting pain in response to an injury.

The bottom line is that a physician--and possibly you need to see a neurologist ultimately, but I'd start with your breast surgeon or oncologist to steer you in the right direction, should evaluate you and see if there is anything that can be done to treat you.

Good luck and I hope you get some improvement.

Kira

epete · December 2008

Why?

epete · December 2008

I am wearing my compression garment 24/7 - perhaps too much. But my hand swells and arm tingle increases w/out the garment. I prefer to hear from other patients than start with a conventional doctor - they panic when they see my hperthermia treatments, distrust the remarkable results and start me down a path of incessant tests and office visits. They aren't accustomed to tissue that's been treated with hyperthermia and misread the scans and x-rays. This lesson I've learned from 2 false diagnoses from conventional docs. Thanks for sharing your suggestions

kira66715 · December 2008

I'd like to think that some conventional doctors can "think outside the box" and share some useful information with you.

In my personal experience, my fingers have only turned blue from over compression. I do know someone with Raynaud's and she gets blue with any cold, and I know someone with lupus and she is always blue--but it's due to Raynaud's. I've know people with reflex sympathetic dystrophy, and they usually turn pale, but can also have edema.

I do know that conventionally they don't want you to wear the compression garment at night when you're not moving, but rather to wrap or use a special night garment. Perhaps that might help.

Kira

epete · January 2009

Welga, I too had terrible pain uder the collarbone and in part of my frozen shoulder after treatment - I think because the technicians burned the bone during my hyperthermia treatments maybe the radiation did same for you????It was clearly the worst pain I suffered on this entire journey. If it's any consolation, my pain subsided after about 10 months. I had to work every day,drive 100 miles/day. I took Darvisette so I could function. If you live in Phoenix area, Dr. Davis helped me considerably. I'd be happy to share his phone number.

epete · January 2009

Thank you. I will leave my compression garment off tonight and see if it makes a difference.

epete · January 2009

I left my arm and hand garment off last night and the blue has disappeared from my fingers. Thanks. That was easy. My fingers and arm are more swollen now but I will put grment on soon. I appreciate your help

epete · January 2009

To my lymphodema pals out there: I'm new to this type of email so I hope I'm gettin this info to all who can use it: My underarm has become very sore and blistered. A compounding pharmacy mixed up a hydrogen peroxide jelly (10%) - it is really helping!

Welga · January 2009

epete,

Sorry you had to go through that ordeal after rads, but glad you are not in that sort of pain anymore.

I had a double masectomy two years ago and no rads. This pain under the collarbone has been there since around one month not like the other pain in the arm. Now I'm worried because last night I found a lump on the collarbone and a swollen area under the collarbone near the shoulder. Trying to reach my hospital. Thanks for the infos and the name of your Dr. but it would be a little far for me as I live in Canada.

I have pushed around some furnitures around that time I just hope it has something to do with lymphodemia and not BC.

Welga

epete · January 2009

I know of 3 Canadians who had treatment at Valley Cancer Institute. They have living quarters for out of towners -vci.org if you're iterested. I'll bet you just irritated tissue.

Welga · January 2009

epete,

I wish I could go there but being out of work since the begining of my BC (left me very weak) it would be a little difficult money wise. Like you say maybe irritated tissue that is what I want to hear. Would like to stop worring because I also am waiting for MIR for a unexplained lesion on my D9 that was seen in April. Nice of you to give me some reassurance,

Welga

epete · January 2009

A year ago my PET CT showed 7 new lesions - but none were lit up on PET; that is, none were active. My 80-year-old nuclear physist down at Valley Cancer said, "look, these lesions are not active. Go live your life.You could live a long time with these. Let's be vigilant and do another test in 6 months." So I did, Welda. I started teaching school again, drive 100 miles a day, and do all I can as glamorously as a one-armed single girl can. And guess what. In July, all lesions except one had disappeared!!! Dr.s are scratching their heads but glad!. I take Cessiac -the chinese version of Essiac- available up there in Canada - I order mine from Joe Ho on the internet. I also give myself Iscador shots. And I drink oxygenated water - cancer hates oxygen, you know. My compounding pharmacist has little tubes of B12 mouth spray that tastes like peppermint - I spray throughout the day for energy - maybe that will help you energy.

Welga · January 2009

epete,

Great news about the lesions, and your renewed energy, I'll take some of your advice and go get the B12, the Cessiac read about it was interested in this and as for oxygenated water, it's the first time I hear about this. Your pretty brave with the shots, my grandmother would give herself some each day and tried to teach me but just to frail when it comes to needles, maybe the Iscador can be taken by mouth. You have given me hope about the lesions and good advice on the supplements, anything to get energy back is something I will do as no ernergy: no life.

Welga

epete · January 2009

The Iscador can only be taken by injection but believe me, there is nobody more squeemish than I!!! You use tiny insulin needles and you grab a hunk of fat from your belly and stick the needle in. The needles are treated to glide easily. I swear you cannot feel them!!! Just to give you courage, in case you decide!!! Good luck. Feel better soon. We take breathing freely for granted. May you breathe deeply and smile.

Welga · January 2009

epete,

Reminds me of the neupogen injections that I could not do, I may try, I had a freind who was doing insulin needles trhrough his clothes, wouach! you are nice and thanks so much, I'll try to do as you say!

Welga

epete · January 2009

Really scared. My armpit is raw but better with hydrogen peroxide gel and baking soda is calming. But arm continues to swell, even with use of Flexi-Touch. Fingers still blue even when I take off compression sleeve/glove. Parts of my fingernails are coming off. Has anyone experienced a wound in lymphodema arm? Does swelling evergo back down? I'm worried about seeing allopathic doc who would guess aqround and make things worse. I feel like I'm in trouble and nobody has a surefire solution.

Welga · January 2009

epete,

I'm sorry you are going throught this. I cannot help but maybe in the lympodemia forum somebody could answer your question if it is related.

Welga

kira66715 · January 2009

Epete, you're right that most allopathic doctors are ill informed about lymphedema: some notable exceptions are Dr. Stanley Rockson at Stanford, Dr. Patti O'Brien at U Vermont, and the Lymphedema group at U of Arizona. Binney knows how to contact the U of Arizona group, and I've emailed Dr. Rockson and Dr. O'Brien and both have immediately returned my emails.

Dr. O'Brien is a woman with lymphedema, a former PT who does LE research and is lovely, here's her contact info

http://www.vermontcancer.org/index.php?id=134

Dr. Rockson is a very busy researcher, clinician, but emails back right away

http://med.stanford.edu/profiles/Stanley_Rockson/

If you're concerned, with good reason, about seeing an ill informed doctor, you might want an email/phone consult with them. Also, wound care centers can be useful.

Hydrogen peroxide is toxic to living tissues, and has fallen out of favor as a wound treatment: it causes burns. You might want to talk to a wound care MD--usually a surgeon, about a less toxic dressing to your axilla. Wounds heal better if kept moist, and many wound care doctors use saline dressing, some antibacterial salve, and lately--in infected situations, honey.

There are holistic doctors out there who could be useful to you.

Kira

cornfieldheiress · January 2009

Thamk you so much for doc info - invaluable. My PT suggested A & D ointment and it seems to help. My biggest worry is that the wound would never heal - she has seen wounds heal and tat's reassuring.

Blue fingers with lymphodema

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