looking for a cause

[redbirdcat44]

Hello. I have been trying to pinpoint when my legs started swelling and what caused it. Has anyone ever done a study of lymphedema patients to see what common factors were in their background that might have caused the problem? other than cancer treatment, I mean, for those of us that just seem to be cursed for some unknown reason.

[Lynora]

It could be congenital - a gene that is triggered at some point during life. It’s termed Primary Lymphoedema - and probably more people are affected by this than Secondary Lymphoedema (caused by cancer treatment), because it’s rarely recognised by medical professionals.

[Tubbylegs]

It's usually the onset of puberty or having surgery that triggers it. That's what my tissue viability nurse told me when I asked said x

[CCT67 in reply to Tubbylegs]

Many of us with Primary aren’t symptomatic until later, even much later in life, not only at puberty. The tissue nurse was only partially right in her response which is unsurprising as most medics receive very little training about the lymphatic system, much less lymphatic diseases. Most Lymphies are more expert on the disease than GPs and other health professionals!

[CCT67]

Primary LE results from being born with a faulty lymphatic blueprint. Congenital LE appears at birth. Latent (pre/sub-clinical) LE often appears later in life often during adolescence, pregnancy, or menopause (all times when hormonal change occurs, the hormone system interacts with the Lymphatic system), or, it is triggered by a trauma to the skin as the superficial Lymphatics are in the skin. If it’s confirmed by way of Lymphoscintigraphy scan that you do have Primary LE ie born with faulty Lymphatics due to genetic fault or underdeveloped Lymphatics in utero, then you were predisposed to developing clinical symptoms at some point in your life. You may never know precisely what the trigger was. There are just under 20 known genes linked to Primary LE however it is thought there are many genes yet to be discovered and there are researchers hard at work trying to discover them. You could have genetic testing done by the LE geneticists at St George’s University Hospital in London which is currently the only LE gene testing facility. If you have a known gene mutation then you would learn the cause of your LE. Anyone can access the gene testing by sending a blood sample and of course paying the fee.

Causes of Secondary LE are more obvious in some instances eg chemotherapy cancer treatment has been undertaken. However other Secondary causes are numerous from an infected bug bite to surgeons inadvertently damaging the lymphatics during routine surgeries eg hysterectomy, Orthopedic etc. As the reasons for developing Secondary LE are so vast and varied, it’s nearly impossible to categorise every Lymphie into a definitive cause. The exception is the many millions of people in non-western countries that have the Secondary form of LE called Filariasis that is caused by a parasite carried by native mosquitos that enters the lymphatics via a bite - it causes complete destruction of the lymphatic infrastructure in the limb. Sadly the millions affected are in impoverished countries with much less available LE treatment than we have in the West.

[redbirdcat44 in reply to CCT67]

Do you know how much the fee for the testing is? It seems like there should be some underlying cause to this disease. Like maybe an inability to digest protein or fat. My family seems to have a lot of people that can't eat meat. Some have lost weight by avoiding it, some have been told they have twisted colons which causes them to have stomach pain when they eat meat, some have a lot of allergies. I've noticed in myself that I shrink when I avoid meat. Also, I was wondering if it could be a blockage in my abdomen somewhere. That seems to be the other thing doctors like to check is whether I have DVT.

[CCT67 in reply to redbirdcat44]

The underlying cause of Primary LE is a genetic mutation while the other issues you mention eg digestion could be a possible side-effect of the disease only if the organs (deeper lymphatics) are affected. This is not common in Lymphoedema but sometimes does occur - I have one of the uncommon side effects which is my lungs are affected by the disease, lymphatic fluid leaks into my lungs thus causing other unpleasant symptoms.

There is a difference between the superficial lymphatics in the subdermal skin, and the deeper lymphatics eg organs. Either or both can be affected by Primary LE.

Many people find their superficial lymphatics positively affected by weight loss or radically changing their to high fat (plant and animal fat, no/low carb diet), as it reduces the inflammatory response (or so it is thought - it’s currently being researched). Many Lymphies report a low carb, high protein/meat/fat diet improves their symptoms eg less swelling.

Stomach difficulties in people would rarely be linked to LE so it’s important not to attribute stomach/ digestion problems to LE and all other causes should be considered

The genetics testing cost the last I heard (2ish years ago) was £600/$800 for a non-St George’s Hospital LE patient. Rather a lot of money when the treatment for LE is universal, not dependent upon the specific genetic mutation. People I know who have paid for testing were women who wanted to know if they had the gene before falling pregnant - it’s not conclusive but thought to be passed on by the female hence wanting to find out before having kids

[Jenny113]

Hi. I have primary lymphodema, my first swelling was my left ankle during my first pregnancy,second right foot (so not symmetrical) during second pregnancy, that was 1990 and just fobbed off until 2000 when I developed cellulitis. Finally found LD clinic where I was treated. All stable until 2012 when I developed it in my left hand....I’m guessing that was to do with the menopause. I was devastated! But with the help of regular MDL and compression during the day and heavy duty compression at night my hand has almost gone back to normal. I must be the only person delighted to see wrinkles in my hand!

I’m also lucky that my legs have been totally stable since 2000 with no further bouts of cellulitis. I do wear my garments from when I get up until I go to bed.

It’s a horrid boring misunderstood and very under diagnosed condition.

I’m very grateful that my daughters don’t seem to have developed it!

I live in dread that I’ll develop it in my right hand so am so careful to look after my skin and treat every little scratch diligently!

[DeadfootMo]

Hello Redbirdcat44,

My GP told me years ago that weight was the trigger and the build up of those fatty cells that have an orange peel look in the legs is why patients with big legs or a body that is disproportionate to the size you are on top are prone to Lymphoedema in the lower limbs and cellucitis also can infect the fat cells below the skin surface and cause a lumpy appearance when you have the infection.

On the subject of weight, I have always been overweight especially so from the age of around 8 or 9 years of age and in my teens whilst mam and dad tried to explain it all as puppy fat it never ever went away in my later teens. So as an adult I started the next stage in life, as fat. Throughout my twenties I tried to control how fat I was with dancing, working in theatres and generally staying fit, but for all this I was still carrying a lot of fat. I weighed approximately 11 stone to 11.7 stone in those years. I also noticed that I was always bought smaller tops and blouses than my skirts or trousers. By the time I was 30 years of age the difference between my top and bottom was 2 sizes, so I could easily fit into a size 12/14 top but I had to have size 16/18 trousers or skirts depending on the manufacturer. In my mid forties my top size started to get closer to my bottom size at only 1 size difference 16/18 top to 18/20 bottoms and now in my mid 50's they are the same size 22.

Despite this size issue of mine when I look in the mirror I would say my legs were disproportionate to the rest of my torso. Also at various stages of life I have tried to lose weight and have several times lost a substantive amount of weight say anything from 2 stone to 3.5 stones but once the diet was complete the weight has always crept back on as I return to normal eating. Today my weight is around 17.7 stone and I would love to lose a good 4 stone and keep it off but I don't think I can keep it off. I'm not saying I can't lose it, I'm saying the problem is keeping it off.

My Dr's refuse to accept that my issues could be genetic, even now when they know I have been diagnosed as having vienous lymphoedema, they still insist that losing weight would reduce this problem and if I lost a lot more than say 4 stone they say the condition may be reversed, as with those with type 2 diabetes according to my GP's the condition is preventable and reversable by a good diet and keeping weight down to a minimum. Anyone who is more than 20% over the recommended weight for their bone structure and height is at risk of all weight related illnesses.

I can't say they are entirely wrong but my father suffered with really swollen legs and feet and he was under weight for his height and bone structure. So I don't know what to think on this score, but I do want to be thinner and weigh less and would hope that if I made this torturous effort with my food and exercise that my lymphoedema issues would reduce themselves. I do have a rebounder and step exerciser I intend to start using soon.

[CCT67 in reply to DeadfootMo]

From your description of carrying weight disproportionately from top to bottom regardless of weight loss, it raises the question whether you have Lipoedema or Lipo-Lymphoedema as opposed to Lymphoedema. Lipoedema has a definitive presentation that is dissimilar to Lymphoedema presentation in that it’s due to adipose fatty tissue. However it is a Lymphatic disease.

Excessive weight is a known trigger for developing and exacerbating LE - the LE specialists on both sides of the pond are reporting that the majority of their new patients coming to them for diagnosis are very overweight/obese which puts a huge strain on the lymphatics causing them to fail, thus resulting in LE. Losing significant weight will reduce symptoms but unlikely to reverse the disease if the lymphatics are broken. Weight loss is advantageous for many health reasons and it would certainly assist the lymphatic system. Weight loss where Lipoedema is present is difficult but not impossible; the weight loss would mainly be limited to the upper body due to the Lipoedema

[DeadfootMo in reply to CCT67]

I was diagnosed at a specialist clinic as having vienous lymphoedema. I had my legs measured for fluid with a specialist scanning machine and then I was measured for compression socks that I can not wear. I can not wear the compression socks because they give me extra ridges in my leg and foot, cut off my circulation leaving me with severe pins and needles and the agony of getting them off in less then 3 hours. Yet the specialist nurse also told me I should wear my socks 23/7 needless to say he was seriously disappointed when I told him that getting the socks on and off exaggerated my asthma and COPD and on top of that gave me additionally sore ridges in my lower legs and feet, cut off my circulation and left me with severe pins and needles with only the shortest of times wearing them. less than 3 hours.

I have since had advice of another nature in relation to my feet and lower leg issues and one of them is that I need physio, massage and an exercise programme for my feet and legs, I could also do with a machine to increase blood flow that can be bought in most chemists. So I am saving up for one of those, so if I add this machine to my re-bounder and step exerciser it won't be long before my feet feel a lot better on a more permanent nature, But I will have to alter my diet too and lose a little bit of weight also to feel any long term benefit. If my condition eases I will class this as a success.

However, on the score of what GP's believe is the right treatment many are novices in the area of Lymphoedema and Lipoedema diagnosis, so may fail to treat and diagnose correctly. I remained un-diagnosed for a good 5 years before being sent to a specialist clinic at a hospice.

[CCT67 in reply to DeadfootMo]

It sounds like your legs might have been measured incorrectly and/or too high a class of compression was prescribed if you have the problems you describe with your compression socks. Pins and needles is a universal sign of being too tight in which case amending the measurements (for bespoke garments) and class is usually the next step. Are your socks bespoke flat-knit or circular-knit? as they are very different from one another. Usually off the shelf circular-knit is used for Venus problems. There are many manufacturers of them and they fit differently so trying a different brand would be worth a try?

I’ve lost count of the many attempts the LE specialist nurse and reps from the garment companies have made to get my bespoke compression right for different parts of my body; we’re currently on the 3rd attempt at getting my head compression garment right.

Like you I had pain, pins & needles with my first garments for my legs and arms garments resulting in a handful of attempts to get them right, and as many attempts to get my torso compression right. It takes persistence but has been worth the effort. I would acknowledge I’m very lucky to have a fantastic LE specialist nurse and private LE therapist both who I see regularly and who have been creative and committed to coming up with compression ideas.

Hopefully you will find that altering your diet improves your symptoms. Diet and activity/movement is such a huge factor for most health conditions - either worsening or improving them. All the best to you

[DeadfootMo in reply to CCT67]

Thank you. Unfortunately the experts are adamnant that the measurements are right, but as it is NHS, it could be a case of funding for Lymphoedema being last on the list. ~Anyway, enjoy what is left of the twelve days of Christmas as 12th night is SAturday. xx All the best for 2019.