It was my 'anniversary' with lymphedema yesterday - LSN

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It was my 'anniversary' with lymphedema yesterday

ulverin
ulverin

It's now been three years. I thought that at some point there will be some kind of solution, or a shift in my thinking. But it's still the same, and I resent this style of living so much. I don't even want to achieve "acceptance" because it's a crappy thing to accept that this is what life is always going to be. And it was so unneccesary. I was so close to making all the right choices, but went into a bad direction anyway and now it's too late to correct. But I'm just hanging on a little bit more I guess.

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Like you I hoped there would at least be a bit of a solution. I paid for a specialist physiotherapist and she did reduce the amount of lymph in my arm, but it came back. Once very quickly with cellulitis. I have had my arm pumped at our local lymphedema clinic resulting in a 11% decrease in the size of my arm. I tried very hard and wore my sleeve 24 hours a day for a month after the treatment stopped, but 5 months later the volume of lymph in my arm is increasing

It is very depressing

Rashshad
Rashshad in reply to gillannan

Hello mam. Hope you are doing good. I am Rashshad from India. My mother is a Lymphedema patient in her upper left limb. She was operated with left breast cancer in 2003 and now her hand is swollen and it pains a lot. Her cancer also relapsed in year 2014 in left neck supraclavicular region. Now i am not able to understand that the pain is of lymphoedema or cancer. I searched for left limb aputation on google and came across your post and read it. I want to know how is your hwalth and what have you been able to learn about amputation. As i am also in the same situation that whenever i put forward the question of amputation, people often throw back negative feedback and other questions contradiction my thought. Please help me. My contact details:-

Phone no - ±91 9999466663 (also available on WhatsApp)

Email - rash8apr@gmail.com

Please contact me mam

It is hard not to let it get you depressed. But have you tried chinese medicine? I freaked out when I found out I had lymphedema since it had stayed mild for over 15 years then started advancing rapidly...spent the next months trying everything I could. What finally worked was doing serious chinese herbs with a chinese medicine doctor. It takes time but it minimizes my lymphedema so I can live a normal life (don't need compression stockings except for flying). I do have to stay active, however, so I walk alot (fitbit...10,000 steps most days). And eat well, I do vegan/plant based. I get some swelling on days I sit at a desk alot, but it resolves itself overnight. So far I've had to do chinese herbs twice, but it has provided me relief for over 5 years now. I am surprised more people don't try it!!!!! Google it to learn more about it. It takes time, the first time I had to take herbs for four months before seeing any change, then it started changing over the next months. The second time I took them it only took about a month to drop the swelling down again. I'm trying it again to see if I can get rid of it permanently, but even if not, doing this every few years is not a big deal to me. Hang in there and good luck!

StellaM
StellaM in reply to Jeanne53

Hi Jeanne,im deffo trying chinese herbs in the very near future. Thanks for mentioning,i wd have had no idea otherwise about trying them.

You said youve used them twice with good results. How long did you take them for each time? And did you have to boil them up and drink,or did you have them in capsule form? X

Jeanne53
Jeanne53 in reply to StellaM

Hi Stella, first time I took them for over a year. Second time a couple years later just required a little over a month to have the swelling drop. I worked with different TCM docs each time so the form was different. First guy got results but was ridiculously expensive, so I used someone else the next time. First time it was liquid in individual pouches--that made it more expensive too I'm sure. Second time it was freeze dried herbs, which was easy and seemed to work as well and less expensive. I actually set up a blog about this topic since it does not seem to be on anyone's radar, feel free to check it out and if you try it please share your experiences with it, good or bad, so we can colletively get more info about what works. fightlymphedema.com. Good luck!

StellaM
StellaM in reply to Jeanne53

Thanks for that info and link Jeanne,will keep you posted on my experience ! X

Rashshad
Rashshad in reply to Jeanne53

Hello mam. Hope you are doing good. I am Rashshad from India. My mother is a Lymphedema patient in her upper left limb. She was operated with left breast cancer in 2003 and now her hand is swollen and it pains a lot. Her cancer also relapsed in year 2014 in left neck supraclavicular region. Now i am not able to understand that the pain is of lymphoedema or cancer. I searched for left limb aputation on google and came across your post and read it. I want to know how is your hwalth and what have you been able to learn about amputation. As i am also in the same situation that whenever i put forward the question of amputation, people often throw back negative feedback and other questions contradiction my thought. Please help me. My contact details:-

Phone no - ±91 9999466663 (also available on WhatsApp)

Email - rash8apr@gmail.com

Please contact me mam

Were you ever given the 4 cornerstones of treatment, compression, sld, skin care and moderate exercise? so vexed for you if not. It is a bit miserable knowing it's life long and no cure, but getting it under self management is a step in a good direction.

ulverin
ulverin in reply to lovesradio

Yes, I have received treatment. It only helps so mucs so much, as you know...

I agree,this disease is totally depressing,i resent it too,and find it very hard work trying to manage it.

My legs look so misshapen and ugly,which is upsetting,and despite trying many things,nothing is helping much.

BUT i saw a friend this weekend struggling after a stroke which has left her with terrible speech problems and very poor mobility,and it s made me realise there are worse things to have to live with.

Having said that,i think lymphedema and lipodema (which i also have) absolutely suck..and the fact that most medics seem to know so little about it/ seem to have little interest in it,makes it all so much worse.

Hi there . I’ve been living now with bi lateral lymphoedena for twenty four years since cancer surgery . It is hard to come to terms with I agree but it is also possible to adapt your life to change . I’ve learned to carefully balance activity with resting and leg elevation . I’m mainly compliant with wearing my compression garments because I know from experience that if I don’t my leg does grow but I do have what I call my naughty days when I think oh what the hell I need my freedom today . I also can’t wear them in hot climates on holiday so I holiday without and then tackle it when I come back . The worst problem I think has been my body image . One of my legs is very much larger than the other and it had taken away my sense of femininity . But even though I can’t wear short dresses or shorts etc I wear loose fitting trousers and long dresses which capture some of it back . I also religiously cream my skin every day which has helped to keep it remarkably soft and I’ve hever had lymph leakage . I’ve only had one experience if cellulitis which requires a weeks stay in hospital but other than that I’ve been ok . I’ve just had a total knee replacement on my bad leg and it was the scariest thing I’ve ever had to do but at the end of the day I’ve had nearly twenty years of extra life after my cancer treatment . I’ve seen my children grow and my grandchildren burn . I might not look like a svelte model but I can still cover up and put a smile on my face . Life us for living with it without Lymohoedema . You can’t fight what you’ve been given but you can try to make it the best that there possibly is . My motto is be the best kind of beautiful that you can be . There’s more to life than living with a lymphoedena limb as annoying and as uncomfortable as it might be x

Oh bless you, how did yours come about and why was it unecessary?mine was removal of lymph nodes through endometrial cancer, (they were clear) I cant accept this either, as you say it is a crappy thing to accept, please tell us what happened, sending big hug, relate so much to your comments,xxx

I had a pelvic lymph node dissection - all clear as well - my cancer was in the cervix. I had some tissues removed near my cervix and they were cancer free as well. I had a strong feeling that I do not need these surgeries but I ignored my gut, oh how I have regretted it but can't go back. My doctors kept assuring that I have to do this to make sure there is no cancer so finally I listened and did it. I wasn't too worried about consequences so I thought it's good to make sure, just in case. But lymphedema isn't all that uncommon and it isn't a walk in a park which is what I later found out!

feels good to be understood, sending you hugs as well!