Lymphedema Support Group
Lymphedema is a condition of localized fluid retention caused by a compromised lymphatic system. The lymphatic system (often referred to as the body's "second" circulatory system) collects and filters the interstitial fluid of the body. Lymphedema has been barely recognized as being a serious health problem; however, this is slowly changing due to education and awareness.
I have on quite a journey these last few years. I am happy to join this support group and look forward to learning more about this terrible disease: Lymphedema. If you floundering with compression and daily care regime, I offer some ideas later in this entry. Happy to be here !!.....Julie
I had a Hysterectomy in 2010. Within a few short weeks, I had difficulty with lower extremity pain and weakness. My entire legs began to swell some months later. I mentioned it at my first and last check in appointments - "no response" !!!
As the explanation of need for my full Hysterectomy, my original GYN Surgeon never mentioned it was possible to fall victim to "Secondary" Lymphedema. Since Breast Cancer Surgery is the more common Surgery, perhaps it never crossed your mind either. I have read horror stories that even the Surgeons for Breast Cancer fail to mention this possible outcome for their Patients.
.Shame on them!
For me, this dreaded Disease invaded my entire body. All my body tissues were swollen and painful. I went through two Primary Cares, 20 Specialists, They hung their heads and suggested it was the extra weight I was carrying causing the pain.
It was 3 1/2 years later before I landed with an Endocrinologist who picked up the Surgical History on my intake form. She printed out pages of information about the Disease and my Protocol of Care. I walked out of her office stunned. I knew little about this Lymphedema Disease.
I have spent the past year researching and taking control of my body and this horrible Disease. It cannot be ignored. It must be aggressively treated on a daily basis for the rest of my life. In the meantime, while I was bounced from Specialist to Specialist - I was robbed of my mobility. I must now use a Wheelchair or Powerchair whenever out of the house. I can "transfer" - meaning I can still shower myself, as long as I have a shower bench in the shower. Thank God the Disease was caught in time before it took over my vital organs.
No matter how much time has passed since your Hysterectomy, this Disease might turn up. So, if for now you have no symptoms, please file away this posting, you might need to re-read this information, I hope not.
The Symptoms: swollen limb or area of body, painful to touch. Increase of weight for no apparent reason (because the lymph fluid is backing up).
How does it happen? - The GYN Surgeon sliced one or multiple lymph nodes during your Hysterectomy. Your Lymphatic System is now "Diseased" - not working like it should.
The Mayo Clinic has a good starting point, to help you fill in the blanks - if you suspect you might have Secondary Lymphedema as a result of your Hysterectomy, go see your GYN again. Print and take those Mayo pages !
In some States, it is even possible to sue for Medical Malpractice for this type of Surgical Injury. So, if you find your GYN hmnmm and not helpful, chalk it up to that reason. There are also time limits for when you can take legal action. I was diagnosed two months outside of the time limit in my State.
Don't stop, you must confirm the Diagnosis with no delay. Since it is more common for Breast Cancer Patients, call your local Cancer Support Office for a referral. Sometimes it might be a Vascular Specialist referral, that's fine, you are heading the right direction.
Research online, arm yourself with this new knowledge. Insist on the Imaging of your Lymphatic System - it will show just where you have blockage or damage. There might be labs done too. Now is a good time for a Full Health Exam including Mammogram if you have delayed having one done this year.
The first thing your Diagnosing Doc will do is write a Referral for a Certified Physical Therapist. You will become good friends with this person; if for any reason you two don't click, get another referral - she is with you for the long haul.
There are several Schools of Massage training Therapists "Certified" to do Manual Lymph Drainage Therapy. Set up an appointment to meet this Therapist. Make no mistake, this is not ordinary massage care.
First the Therapist will perform a special massage: with special attention to lymph node centers and moving your lymph fluids. Now the Compression part of the appointment: when the Therapist was trained, she was trained to "bandage" the Lymphedema Patient. They make it look easy. It is not ! Soon after your first bandaging appoint, they will loosen as you walk to your car - right away, you realize this is going to be a problem.
Don't despair, most Lymphedema Patients don't comply with this type of Compression Product...before long, they are researching for Alternative Compression Products. I spent the whole last year buying all the Products. What a trip ! A Very Expensive one !
All Medical Insurance Companies differ with Benefit Limits for Rehap\Physical Therapy. Medicare will pay for a certain number of Certified Massage Treatment Sessions per year. If you can afford it, I would do the following: have the compression garments in hand before the first massage treatment. At the consult with the Therapist, she should be able to measure you for alternate compression garments.
Once you have your compression garments, then set up two consecutive weeks of care: 5,90 min sessions for one week, repeat for second week. At the end of the second week, you should have been trained to perform your own massage for your disease body condition
I cannot impress enough how important it is to hit this with the above treatment timed sessions. Don't space the treatment sessions out. To make the most of this treatment, ideally you would see her on Sat and Sunday too.
A bit more about the downsides to using "Short Bandaging" to treat your Lymphedema: In short order, the skin begins to break down. It is easy to figure out - the lack of "air" . For many Bandaged Patients, they end up with skin wounds. These wounds are covered up again and again, and will fail to heal. Not only is self-bandaging very difficult to accomplish, but you can end up with terrible never healing wounds.
A year ago, I was like you : newly Diagnosed with Lymphedema (though I am rare to have it body wide - imagine me wrapped in bandages neck to toes ! ) You can easily see bandages were a bad plan for me, indeed, a bad plan for most patients.
It was not long before I tossed aside the bandages and quit doing my daily massage. I was a "non-compliant" Lymphedema patient for almost one year. Then I ran across an article that Lymphedema can attack the vital organs. I decided to get back on the Research Bus.
It was only last month, somehow I ran across the following Alternate Compression Garment Product Line. I think an Angel was on my shoulder that night ! I came across a "new and wonderful" Compression garment. After the bandaging, I was hesitant. I bought a set and I was hooked ! I was determined to take charge of this Disease once and for all..
I cannot say enough good for these Compression Garments - keep reading: they are truly remarkable and feel so good, and the weave allows "air flow" !!
Find them at Solideamedical.com it is their newest product line:"Active Massage" --- when wearing, they are always working, compressing the fluids, moving them upward. After wearing them for the day session, take them off and you will see the fabric pattern on your skin. Believe it or not, the garment is still working even when off ! My experiences with Solidea Products have only been with the Active Massage line. (There was an older product, only buy "Active Massage").
Sue at Solideamedical.com will be enormously helpful, count on her. She will be your new best friend, well, next to your Massage Specialist.
Even if you are done working with your Physical Therapist -
- You still need to do self manual lymph massage, ideally each day. Compression Garments are not a cure, they are a treatment.
There are more daily self-care tasks to do to achieve best results (skin free of wounds, lymph fluids moving along).
The fist daily task is called "dry skin brushing", link to you tube DIY: https://www.youtube.com/watch?v=panD5S72Tb0
You can find the type of brush used for this care at Amazon for about $11. The name of the brush is: Yerba Prima Tampico Skin Brush. You should replace your brush several times per year or more.
After dry brushing then shower (never ever hot water !) - followed by light application of a good lotion. Let lotion dry or pat excess before adorning the compression garments. I am choosing to wear cream colored garments at night, which allows my black garments to air out. I wash all garments after several wearings.
For those persons needing the bilateral arms: I have short arms: I have strap in front of my jaw, adorn each arm, always making sure no wrinkles (for all garments !) - Then I tie some of the excess strap and toss behind my head. Doing this, my arms stay up and in place all day long, no muffin tops, no creeping down problems. I keep updating my "knot method" - today I tied off with a short ribbon, tomorrow I will try one of those tiny stretchy pony tail holders,
I will say this again - I am unusual, I have head to toe Lymphedema. I have a lot of "property" to care for, so my daily regime time really adds up each day. The Solidea garments I purchased are the bilateral arms and long leggings (they reach high above my belly button and I pull them halfway down my foot to assure good compression and movement of lymph fluids. It was advised not to wear something for the exposed torso, instead I make sure I self massage this area 1-2x/day. And I hope whenever doing self massage any areas - we are 3D - don't forget to do the backside of that body part !
If you have not been trained in self massage or need a repeater class - one idea is "LANA" website:
https://www.clt-lana.org/search/therapists/ -You might find a Certified LANA Therapist at that same site. If you are lucky enough to have a husband or friend : to give your "backside" the full attention of massaging those areas.
A comment about massage therapy - once your fluids are in good control with massage and compression, hopefully you discover like I did: my tissue pain nearly disappears. It certainly does not hurt to put on the Solidea Garments. This was a happy surprise, and I am really surprised I did not notice when the pain went away.
I know we all come in different sizes and shapes, our impaired limb might be very disfigured. I guess I am lucky ? I am terribly morbidly obese (BMI>54) and the large Solidea arms work great for me and the XXL Solidea Leggings likewise work great.
Have someone help you measure, then call Sue if you think you might have fitting issues.
To augment my daily care regime, I have just decided to try Aqua Therapy - and will be working with Lymph Massage Aqua Therapist for a few weeks - as a possible alternate therapy to hand therapy. My research indicates I might have even better results, certainly worth a try - certainly a good idea to mix things up a bit from time to time. If I find the pain in my tissues returns again when pressed - well, then I know the AQUA is not working.
Carefully think through all the great recommendations you find at this site, at others, from your LANA Therapist and possibly your doctor. Look for Disease specific Blog Forums for Lymphedema (and don't confuse it with the other disease: Lipedema)
Admittedly, I have found best advice from other persons suffering my exact medical conditions. There are some surgical interventions coming soon around the corner - being done now in some US University Medical Centers : lymph node transplants, bi-passes, etc. For those sufferers who have some money: Tumescent Liposuction is "nearly" a cure for some Lymphedema Patients. Some of the best world care clinics are in Germany,
I want to mention Pain Management: I am hearing so many Lymphedema Patients receive no support from their Primary Care. For Many Patients, they endure incredible hourly, daily unmanageable pain. Ask your Primary Care for a referral to a Pain Clinic. You should not be suffering from this Disease. And for some Patients: Acupuncture, Meditation and Lidocaine Gel Patch (Rx only !). And don't worry, you do all above and you still need RX Pain Meds - we are all different.
This Disease has an inflammatory component - you need not "Diet", but you do need to adjust your daily Diet. An Anti-inflammatory Diet such as the Mediterranean Diet is a good suggestion to try. No more drinking, smoking or recreation drugs go without saying (but saying it in any case). As the Massage and Compression Therapies start working their magic, you should have some moderate pain relief (most do) - and this is a good time to introduce some Exercise or Movement Therapy. Your original LANA Therapist will be a good source for such movement examples for each day.
Along your treatment care, you might be encouraged to use a Pump to move your fluids. From my experience, it was terrible, one step above those horrible short bandages. Yes, I bought one six months ago, but quickly set it aside - way too much trouble and I could only use it with assistance of my husband. This weekend I happily found myself boxing up the Flexi Pump, placing it in storage,
I hope this posting sends off some alarms and bells for some readers. I hope you make an appointment to see your Medical Provider to get your own ball rolling, at your earliest convenience.
For those of you already in the know, keep up the good Lymph care as best you can. This Disease is serious and needs serious attention.
Best of Luck to All ! This life with this disease Lymphedema is quite a rollercoaster !...like you, I am a Patient and not a Medical Provider. Let's keep sharing until we all feel better. Julie
eee gads, no spell check at this site? sorry for my typos - it is late and I am, as usual, very tired
I had a Hysterectomy in 2010. Within a few short weeks, I had difficulty with lower extremity pain and weakness. My entire legs began to swell some months later. I mentioned it at my first and last check in appointments - "no response" !!!
As the explanation of need for my full Hysterectomy, my original GYN Surgeon never mentioned it was possible to fall victim to "Secondary" Lymphedema. Since Breast Cancer Surgery is the more common Surgery, perhaps it never crossed your mind either. I have read horror stories that even the Surgeons for Breast Cancer fail to mention this possible outcome for their Patients.
.Shame on them!
For me, this dreaded Disease invaded my entire body. All my body tissues were swollen and painful. I went through two Primary Cares, 20 Specialists, They hung their heads and suggested it was the extra weight I was carrying causing the pain.
It was 3 1/2 years later before I landed with an Endocrinologist who picked up the Surgical History on my intake form. She printed out pages of information about the Disease and my Protocol of Care. I walked out of her office stunned. I knew little about this Lymphedema Disease.
I have spent the past year researching and taking control of my body and this horrible Disease. It cannot be ignored. It must be aggressively treated on a daily basis for the rest of my life. In the meantime, while I was bounced from Specialist to Specialist - I was robbed of my mobility. I must now use a Wheelchair or Powerchair whenever out of the house. I can "transfer" - meaning I can still shower myself, as long as I have a shower bench in the shower. Thank God the Disease was caught in time before it took over my vital organs.
No matter how much time has passed since your Hysterectomy, this Disease might turn up. So, if for now you have no symptoms, please file away this posting, you might need to re-read this information, I hope not.
The Symptoms: swollen limb or area of body, painful to touch. Increase of weight for no apparent reason (because the lymph fluid is backing up).
How does it happen? - The GYN Surgeon sliced one or multiple lymph nodes during your Hysterectomy. Your Lymphatic System is now "Diseased" - not working like it should.
The Mayo Clinic has a good starting point, to help you fill in the blanks - if you suspect you might have Secondary Lymphedema as a result of your Hysterectomy, go see your GYN again. Print and take those Mayo pages !
In some States, it is even possible to sue for Medical Malpractice for this type of Surgical Injury. So, if you find your GYN hmnmm and not helpful, chalk it up to that reason. There are also time limits for when you can take legal action. I was diagnosed two months outside of the time limit in my State.
Don't stop, you must confirm the Diagnosis with no delay. Since it is more common for Breast Cancer Patients, call your local Cancer Support Office for a referral. Sometimes it might be a Vascular Specialist referral, that's fine, you are heading the right direction.
Research online, arm yourself with this new knowledge. Insist on the Imaging of your Lymphatic System - it will show just where you have blockage or damage. There might be labs done too. Now is a good time for a Full Health Exam including Mammogram if you have delayed having one done this year.
The first thing your Diagnosing Doc will do is write a Referral for a Certified Physical Therapist. You will become good friends with this person; if for any reason you two don't click, get another referral - she is with you for the long haul.
There are several Schools of Massage training Therapists "Certified" to do Manual Lymph Drainage Therapy. Set up an appointment to meet this Therapist. Make no mistake, this is not ordinary massage care.
First the Therapist will perform a special massage: with special attention to lymph node centers and moving your lymph fluids. Now the Compression part of the appointment: when the Therapist was trained, she was trained to "bandage" the Lymphedema Patient. They make it look easy. It is not ! Soon after your first bandaging appoint, they will loosen as you walk to your car - right away, you realize this is going to be a problem.
Don't despair, most Lymphedema Patients don't comply with this type of Compression Product...before long, they are researching for Alternative Compression Products. I spent the whole last year buying all the Products. What a trip ! A Very Expensive one !
All Medical Insurance Companies differ with Benefit Limits for Rehap\Physical Therapy. Medicare will pay for a certain number of Certified Massage Treatment Sessions per year. If you can afford it, I would do the following: have the compression garments in hand before the first massage treatment. At the consult with the Therapist, she should be able to measure you for alternate compression garments.
Once you have your compression garments, then set up two consecutive weeks of care: 5,90 min sessions for one week, repeat for second week. At the end of the second week, you should have been trained to perform your own massage for your disease body condition
I cannot impress enough how important it is to hit this with the above treatment timed sessions. Don't space the treatment sessions out. To make the most of this treatment, ideally you would see her on Sat and Sunday too.
A bit more about the downsides to using "Short Bandaging" to treat your Lymphedema: In short order, the skin begins to break down. It is easy to figure out - the lack of "air" . For many Bandaged Patients, they end up with skin wounds. These wounds are covered up again and again, and will fail to heal. Not only is self-bandaging very difficult to accomplish, but you can end up with terrible never healing wounds.
A year ago, I was like you : newly Diagnosed with Lymphedema (though I am rare to have it body wide - imagine me wrapped in bandages neck to toes ! ) You can easily see bandages were a bad plan for me, indeed, a bad plan for most patients.
It was not long before I tossed aside the bandages and quit doing my daily massage. I was a "non-compliant" Lymphedema patient for almost one year. Then I ran across an article that Lymphedema can attack the vital organs. I decided to get back on the Research Bus.
It was only last month, somehow I ran across the following Alternate Compression Garment Product Line. I think an Angel was on my shoulder that night ! I came across a "new and wonderful" Compression garment. After the bandaging, I was hesitant. I bought a set and I was hooked ! I was determined to take charge of this Disease once and for all..
I cannot say enough good for these Compression Garments - keep reading: they are truly remarkable and feel so good, and the weave allows "air flow" !!
Find them at Solideamedical.com it is their newest product line:"Active Massage" --- when wearing, they are always working, compressing the fluids, moving them upward. After wearing them for the day session, take them off and you will see the fabric pattern on your skin. Believe it or not, the garment is still working even when off ! My experiences with Solidea Products have only been with the Active Massage line. (There was an older product, only buy "Active Massage").
Sue at Solideamedical.com will be enormously helpful, count on her. She will be your new best friend, well, next to your Massage Specialist.
Even if you are done working with your Physical Therapist -
- You still need to do self manual lymph massage, ideally each day. Compression Garments are not a cure, they are a treatment.
There are more daily self-care tasks to do to achieve best results (skin free of wounds, lymph fluids moving along).
The fist daily task is called "dry skin brushing", link to you tube DIY: https://www.youtube.com/watch?v=panD5S72Tb0
You can find the type of brush used for this care at Amazon for about $11. The name of the brush is: Yerba Prima Tampico Skin Brush. You should replace your brush several times per year or more.
After dry brushing then shower (never ever hot water !) - followed by light application of a good lotion. Let lotion dry or pat excess before adorning the compression garments. I am choosing to wear cream colored garments at night, which allows my black garments to air out. I wash all garments after several wearings.
For those persons needing the bilateral arms: I have short arms: I have strap in front of my jaw, adorn each arm, always making sure no wrinkles (for all garments !) - Then I tie some of the excess strap and toss behind my head. Doing this, my arms stay up and in place all day long, no muffin tops, no creeping down problems. I keep updating my "knot method" - today I tied off with a short ribbon, tomorrow I will try one of those tiny stretchy pony tail holders,
I will say this again - I am unusual, I have head to toe Lymphedema. I have a lot of "property" to care for, so my daily regime time really adds up each day. The Solidea garments I purchased are the bilateral arms and long leggings (they reach high above my belly button and I pull them halfway down my foot to assure good compression and movement of lymph fluids. It was advised not to wear something for the exposed torso, instead I make sure I self massage this area 1-2x/day. And I hope whenever doing self massage any areas - we are 3D - don't forget to do the backside of that body part !
If you have not been trained in self massage or need a repeater class - one idea is "LANA" website:
https://www.clt-lana.org/search/therapists/ -You might find a Certified LANA Therapist at that same site. If you are lucky enough to have a husband or friend : to give your "backside" the full attention of massaging those areas.
A comment about massage therapy - once your fluids are in good control with massage and compression, hopefully you discover like I did: my tissue pain nearly disappears. It certainly does not hurt to put on the Solidea Garments. This was a happy surprise, and I am really surprised I did not notice when the pain went away.
I know we all come in different sizes and shapes, our impaired limb might be very disfigured. I guess I am lucky ? I am terribly morbidly obese (BMI>54) and the large Solidea arms work great for me and the XXL Solidea Leggings likewise work great.
Have someone help you measure, then call Sue if you think you might have fitting issues.
To augment my daily care regime, I have just decided to try Aqua Therapy - and will be working with Lymph Massage Aqua Therapist for a few weeks - as a possible alternate therapy to hand therapy. My research indicates I might have even better results, certainly worth a try - certainly a good idea to mix things up a bit from time to time. If I find the pain in my tissues returns again when pressed - well, then I know the AQUA is not working.
Carefully think through all the great recommendations you find at this site, at others, from your LANA Therapist and possibly your doctor. Look for Disease specific Blog Forums for Lymphedema (and don't confuse it with the other disease: Lipedema)
Admittedly, I have found best advice from other persons suffering my exact medical conditions. There are some surgical interventions coming soon around the corner - being done now in some US University Medical Centers : lymph node transplants, bi-passes, etc. For those sufferers who have some money: Tumescent Liposuction is "nearly" a cure for some Lymphedema Patients. Some of the best world care clinics are in Germany,
I want to mention Pain Management: I am hearing so many Lymphedema Patients receive no support from their Primary Care. For Many Patients, they endure incredible hourly, daily unmanageable pain. Ask your Primary Care for a referral to a Pain Clinic. You should not be suffering from this Disease. And for some Patients: Acupuncture, Meditation and Lidocaine Gel Patch (Rx only !). And don't worry, you do all above and you still need RX Pain Meds - we are all different.
This Disease has an inflammatory component - you need not "Diet", but you do need to adjust your daily Diet. An Anti-inflammatory Diet such as the Mediterranean Diet is a good suggestion to try. No more drinking, smoking or recreation drugs go without saying (but saying it in any case). As the Massage and Compression Therapies start working their magic, you should have some moderate pain relief (most do) - and this is a good time to introduce some Exercise or Movement Therapy. Your original LANA Therapist will be a good source for such movement examples for each day.
Along your treatment care, you might be encouraged to use a Pump to move your fluids. From my experience, it was terrible, one step above those horrible short bandages. Yes, I bought one six months ago, but quickly set it aside - way too much trouble and I could only use it with assistance of my husband. This weekend I happily found myself boxing up the Flexi Pump, placing it in storage,
I hope this posting sends off some alarms and bells for some readers. I hope you make an appointment to see your Medical Provider to get your own ball rolling, at your earliest convenience.
For those of you already in the know, keep up the good Lymph care as best you can. This Disease is serious and needs serious attention.
Best of Luck to All ! This life with this disease Lymphedema is quite a rollercoaster !...like you, I am a Patient and not a Medical Provider. Let's keep sharing until we all feel better. Julie
eee gads, no spell check at this site? sorry for my typos - it is late and I am, as usual, very tired
Lympedema is a roller coaster I agree, the emotional pain is enormous . I have bought a brush it is 100 % organic , any brush made out of plastic is not allowed as it can make one sick. I will try body brushing soon. I heard swimming is also a good exercise.
Best wishes