Hi guys, I just signed up and it feels great not be alone anymore! I did not realise that they were so many of us species and it feels good to see u all on this blog!
I am bluedolffin and Iam suffering from LE on my lower left arm and hand for 6 years now! Can't believe that long!
To be honest I don't know how I have developed it. Think Iam secondary case but not really sure either. I had a crusade ligament operation on my left knee twice called macintosh operation when I was 18 and 20 and developed LE in my left arm 10 years after. Doctors say that there cannot be any connection btw my arm and my leg but I believe there might be one.
Anyone had experience the same?
Glad to hear from u all !
Regards
Bluedolffin
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Bluedolffin
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You are quite right..one part of the lymphatic system cannot exist in isolation to another. Your doctor's reply is stupid and totally ignorant and sadly typical of the so-called medical' profession'. Out of 100 doctors it would be a fair guess to say that maybe two would have Any idea on the subject. I have had problem with my lymphatic system for 27 years.. it started off with an infection in my lower right leg and due to total ignorance and inappropriate 'treatment by the hospital in New Zealand it has stayed with me ever since. If I lived in USA I would be a millionaire many times over I suppose..malpractice! But back to lymphoedema....Now, all these years later I have lymphatic problems to some degree in my lower left leg and ankle, my left arm and therefore left hand, from time to time my neck . .. and occasionally when my head feels foggy that that is also a reflection of the condition. How you feel at any one time with the condition is VERY dependent on the weather and how your body responds to it. I have always been a very athletic person..walking, running, swimming , hiking etc, but right now walking is my thing. Nutrition plays a vital role. GOOD nutrition and that means eating and drinking fresh and raw as much as you can and leaving out the poisonous rubbish like milk, sugar butter and synthetic table spreads. DEPEND ON YOURSELF, EDUCATE YOURSELF. .
thanks pushkin. It feels great to have such a nice warm welcome on the site.
I am following all those stuff about good nutrition already. I am sorry to hear about your leg, it looks like we are on the same boat :-), right? and general practitioners are the sharks!
How did you find out that you were suffering from this disorder?
It took me more than a year to find out what was wrong with me. I Went to see so many doctors and specialists. None of them had the clue! One told me to rest :-), another one told me there was nothing wrong!, a GP told me it might be an infection.
Finally thanks god, a clever fisioterapist found out !. I am glad to hear that you enjoy walking. I have a dog so i walk a lot with him and it is true that it makes a difference. I do yoga as well but it is a bit hard on my wrist.
Talking about nutrition, Do you still eat bread? I love bread and it is very hard for me to quit it. I make lots of soups and drink lots of tea and juices.
Did you consider getting an operation someday? Lymphatic vessel or lymph node transplant?
I read the comments on this blog and the new lymphatic vessel technic seems to be promising?
Hi bluedolphin (love the name) I can't see why there wouldn't be a connection cos lymph flows all round the body and the swelling appears where there are lymph nodes dysfunctional. Like pushkin think most GPs don't know first thing about the condition and you are just lucky if you are properly diagnosed and fitted with right compression. Swimming is best thing I have found for my arm/hand with yoga a close second though I wear my glove and sleeve and avoid long hold positions with weight bearing through wrist. Hope that's some help xx
thanks loves radio. (I presume you love radio yeah i think we know more than those practitioners since we are the ones suffering. I deeply believe now there is a connection cause when I go to my specialist to do an MLD session, It affects all my body and not only my arm.
May i ask what is the cause of your lympedema ? Did you fall? Did you get an previous infection?
Hi again, mine followed left breast mastectomy with lymph node removal and appeared about 3 months after surgery. Knew it was a risk but did not initially associate achy feeling in forearm with lymphoedema but an article in Viva (mag of Breast Cancer Care) pointed me in right direction and I was very fortunate to find specialist physiotherapist. I will not see her for ever though as she has a new job, to set up service from scratch in Ayrshire and Arran Health Board district. I am thrilled for her but sad for me. However the good news is that there will be a replacement in post before she goes. Between this forum, LSN and my physio I am learning to live with/manage this life long condition.
I have primary lymphodema. Symptoms first appeared in my right leg when was about 14 and it was diagnosed when I was about 16. That was about 40 years ago and I am now showing signed of swelling in my right hand. The challenge for people with primary lymphodema (which yours could well be) is that their lymphatic system isn't quite good enough to do the job. It's not that we don't have a lymphatic system, is just not quite good enough. The way I look at it (with the benefit of a degree in biology) is that nature is always trying to find a balance between over engineering things and under engineering them. Over engineering means spending more resource, food, materials, space in your body, on something than is actually needed. If you over engineer on thing something else will probably loose out. Under engineering, well that's our lymphatic system, not disaster but results in some undesirable side effects.
So what could you do? Well you could ask your doctor to refer you to a specialist lymphodema clinic for a diagnosis and may be an assessment of your lymphatic system in your arms and legs? I had me legs done may years are, my lymphatic system is suboptimal.
Thanks for your nice and kind message. It came up to me that I could be primary LO. Will do an MRI this year to be sure. I don't know if u ever tried jumping on a trampoline. It is super good for lymphatic's. Good evening
hi bluedolffin im also new to this forem its great isnt it i wish i found it sooner !!! i agree with lovesradio i think there must be a connection i have secondry lympheodema i swell in my right leg and all across the pelvic area but its worse on my right side i had lymphnodes removed from pelvic area during my radical hysterectomy due to cervical cancer they took more lymphnodes from my right side than my left only a few more but that made the difference. i was told it can effect different areas if theres a break in your lymphatic system not only does it effect that area but surrounding areas to like me my leg is also effected because the fluid is not running smoothly around my groin it builds up so the fluid in my leg has no where to go . i was also told some peoples lymphatic system is more sluggish than others and the slightest thing can effect it and also people have a different number of lymphnodes in the same areas of there body they gave me the example of two ladies who have suffered from breast cancer and had the same amount of lymphnodes removed from under arm area one lady could be left with enough so the lymphatic system still works well where as the other could easily develop lympheodema because there were less there to start with theres so many different factors to lymheodema i wear compression tights if i didnt in time my lower leg and ankle will also be effected needless to say i wear them everyday !!! ive been given great advice im going to contact LSN tomorrow perhaps they can help you with any questions you have to let us know how you get on with your scan i purchaced a trampoline just before i was diagnosed ive been too scared to use it incase it causes too much fluid that i cant get rid of now im tempted to try how long do you go on it for ? and how often ? i cycle i would love to return to my jazzacise aerobics class but again bit worried about it x
Hi Alisonlouise4444, It is great to talk to you and find so many people with the same pains.
All my left leg is not affected yet. Only my left knee but I am very scared of it. My left arm is definetly affected and wait for surgery.
As most of you on this blog, I try to eat healthy and do some trampoline once per month, also do some yoga, cardio, walking and swimming. i love aerobics too and i understand your situation.
We all have our personal dreams! My dream would be to able to wear a sexy top without sleeve and to wear a watch on my left wrist.
Alisonlouise4444: Would you mind if i ask you : During hysterectomy, How many lymph nodes did they remove from your pelvic area ?
Hi bluedolffin they removed 38 lymphnodes during surgery slightly more from the right side than left. My swelling is in my right leg it started on the right side of grion area but its all across it now.
The grion can be more painful than the leg at times feels so heavy.
Im starting pilates saturday morning i couldnt find a yoga class in walking distance as i cant drive.
I heard they are very similar do you know the difference ?
Wishing you lots of luck with your surgery and that it improves your health greatly.
38! OMG. I will let you know when i see a surgeon.
Yoga and Pilates are quite similar indeed. Depends what part of your body is the weakest. Personally speaking, Yoga is more fun but sore on my wrists, Pilates is better recommended for someone who had back injuries. Both are great exercises though.
Maybe try both. Yoga is known to stimulate your glands so presumably lymph nodes !
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yeah i think we know more than those practitioners since we are the ones suffering. I deeply believe now there is a connection cause when I go to my specialist to do an MLD session, It affects all my body and not only my arm.
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