I'm 38 now and I was healthy most of my life. Since 2-3 years my swelling in leg is progressing though. Few weeks ago I've got scintigraphy and fluorescent results saying that my lymph malfunction is somewhere above my groin, in lower abdomen or stomach. They cant say as the methods are not able to tell above groin. So not even an operation is an option here.
So its a sentence for me. I'm trying to not get depressed but it's real hard. I'm sure you know very well that sport activities, or even normal life is very different with lymphedema.
I'll be honest I even have dark thoughts.
How do you guys manage to stay positive?
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Snup
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Hi I think that it is natural to feel depressed when first diagnosed, I felt a whole range of sad and angry emotions when I was.
Have you thought about accessing your mental health team for support or does your specialist clinic have anyone they can refer you too?
I found talking to people on this site invaluable as everyone is so helpful and very understanding. As time has progressed I have felt a lot happier but still get the occasional why me feeling, I log onto here when that happens and talking to others really helps.
Hey there- your question is a good one. I was just diagnosed with primary Lymphoedema in my left leg in October. I am 44. Life is definitely different. From what I can wear to the precautions I need to take with my leg, there is a lot to think about. I try to focus on how better I feel when I take care of my leg, and feel fortunate that I havent had some of the other complications I have read about.
This board has helped me a lot. I am in the US, and I don't know anyone else in my age group that deals with this. So I appreciate the camaraderie and advice.
I agree with HazieC that fi ding someone to talk to that specializes in mental health would be valuable. Especially if your thoughts are dark. Allow your lself a pity party- because it sucks. We shouldnt have to deal with this. But then try to find activities you can still enjoy. Biking, walking, swimming are all things that can be done with care. Listen to your body. You might find new activities that you didnt think to try before. Meditation, yoga, etc. It is good that you are reaching out. Keep doing that.❤
Yeah meditation is helping. I need to try yoga. Also last 2-3 years definitely made ma a different person. I was just thinking how many stupid things I didn't do because of Lyme disease and lymphoedema.
What is the biggest problem is that I have 5 year old daughter. I wanted to show her everything. Before my health went down me and my family were doing trips every weekend. I was very active.
Well I'm going to start taking penicillin-like antybiotic next week. For 6 months I should feel better mentally as borrelia is known to cause depression.
I have found a few threads on this site with info of ongoing researches, even if the hope is slight its still a spark which lightens the complete darkness.
Thank you for support, I'll definitely stay in touch.
Hi Snup. Very sorry to hear about your bouts of depression - I can definitely relate. I sometimes feel quite a bit older as a result of this and I often get angry and frustrated about wearing these ugly stockings, especially now that it’s warmer. I know I will be very crabby on hot days, and can’t see myself wearing shorts with these, unless it is when no one sees me. I’m looking forward to swimming in relatively cold ocean water soon, which is the perfect combo to cool down and also reduce some swelling. I think what helps me is to see how many people have all kinds of chronic conditions, and also the fact that I can still work out just as much as before, even if not as comfortably. I’m actually more mobile than 2 - 3 years ago, when a serious ankle sprain ( the original cause of the swelling, together with genetics) put me in frequent bad moods, because I have to be on my feet a lot and get super restless when I can’t move well enough. Sometimes I can take things with a sense of humor, especially when I see how others ( on this site and Facebook groups etc) are dealing with it. Good luck to you!
I totally agree about the heat making me crabby. I am in Iowa- the middle ofthe US. We will have a heat wave this week- which is early for May. It has been disheartening. But my kegs feel so much better when I am compliant with my socks. I dont think I could ever stop wearing them.
And Snup, I have had lots of activities pass me by because I was too self conscious to participate due to my weight. Why do we do that?
You have a kiddo to look up to. When I was depressed after my mom died, my kids were the reason I got up every morning and the reason I could findnlight in the dark days. Maybe the two of you can find new activities to enjoy together. Best of luck!
Iowa is a killer in the summer - we used to live in Nebraska and that was similar. Then again, most places in the US are hot in the summer! I’m in Maine now, which is much better, but I used to teach so I didn’t care too much about how hot it was in the summer, especially because we had a pool. Now we run an inn and I’m on my feet all summer - but cold salt water definitely helps, as does swimming! A few months ago Lynora posted all kinds of summer tips for lymphedema, and the one I’m using today is freezing my stockings and then putting them on until the next pair is cold and frozen enough! Still, I wish I could wear shorts and bare legs again...and Snup, I agree about the glimmer of hope I feel when I read about new research! Wish lymphedema was a sexy enough topic for more doctors to want to focus on it...
Hi I have depression and anxiety and had it before I was diagnosed with lipoedema and lymphoedema at the time I was diagnosed I was pleased to have the diagnosis as due to a motorbike accident 35 years ago I now need a total knee replacement and was denied it on the grounds that my legs were to big. They would send me to weigh watchers and at one point talked of a gastric band. I was able to go to them and say that there is no good doing these as it wasn't going to change the shape of my legs enough for me to fit into their criteria. All the time I was losing my mobility and putting on weight as I wasn't able to exercise enough.
I had a job that I loved doing although it meant a 50 mile journey to and from work, I was a teaching assistant working with students with special needs. Then in December 2016 I got a bout of depression and anxiety. I was just recovering from that when I broke my pelvis and spine turning over in bed and discovered that I had osteoporosis to go with the osteoarthritis, lipoedema and lymphoedema and my school decided that with the osteoporosis as well I was no longer employable and given early retirement due to ill health.
Since then I have really hit rock bottom with depression and anxiety and had the really dark thoughts and I have become argrophobic a double whammy you could say and just as I was starting to feel that I could get back into kayaking which love doing I got cellulitis and I now have lymph fluid leaking from my leg so I can't even do that and I am going down again.
Now I am wondering if doing all the precautions are really good for me or say to hell with it and go kayaking etc for my mental health and to be in a better place mentally. At the moment I am sitting here with my bandages off letting the air get to my wounds with my dogs going past me occasionally rubbing against my legs, but what the hell they give me so much joy and playing with them lifts my mood.
Balance out your life and if that means you need to take the odd risk or do things a little different from what you have been told but makes you feel better then go for it. We only have one shot at life why should we be controlled by lymphoedema.
Now I just need to practice at this as well good luck
Hi snup thanks for bringing this subject up! It needs airing!
Think everybody on this forum has the right to get down,anxious,scared at times....glad you have given us the opportunity to have a little rant if we feel the need!..On this forum we know we will be heard and understood as we are amongst friends.
My frustrations,worries,concerns mainly are...
I have had chronic fatigue syndrome for over twenty years ..lost career,home and everything,and being unable to do much activity,I put on a lot of weight over the years. In july 2016 I began a low carb eating regime and lost 100 pounds in 12 months..which didnt help my chronic fatigue/ brain fog at all, but did a lot to lessen my risk of heart attack,stroke etc. Going to my doctor to ask her why i hadn't lost weight from my chubby ankles and knees,she told me i had both lymphoedem a AND lipoedema.
You can imagine that was a bit of a blow...i was slim everywhere else but seemingly,I would never lose weight from my legs.
Next depressing thing ...my Gp having no idea where to refer me,sent me to a vascular clinic where i was seen by the very nice and only lymph nurse in a large hospital,who was about to retire. She measured me for stockings and told me i MUST wear them 24/7/365 or the condition could get much worse! That was the most frightening thing to hear!!!!!
No other info offered,apart from keep legs moisturised.
The stockings - my major bugbear!!!!! - so thick and heavy from feet to top of thigh,kept up by belt. I have arthritis in hands and no strength in hands/ arms due to Chronic fatigue,so its a daily nightmare putting them on..even those with a good grip struggle! These awful stockings can practically stand up on their own and can march to the washing machine without my help!
Next upsetting thing ( and the last I'll mention,you will be relieved to hear) is noticing that my legs are already getting worse despite the stockings,and my attempts to find the info online that the medics werent offering,can be a bit confusing,some conflicting advice there..oh and terrifying to see pictures of how very big and disfigured some peoples legs could become ..
but anyhoo,in desperation i wrote to a specialist in America for advice..he has studied the lymphatic system for 25 years and has his own clinic. He very kindly offered me a free place on his online course.he has offered no promises that my legs will improve,but I am now learning ways to get the lymph system working better. Learning how to self massage head,neck and body,with explanations how and why this works... Finding out why deep breathing and movement is so important...and how eating an alkaline diet helps massively.
I am also experimenting with using essential oils when i do my massages.
This online course is something for me to hold on to and be hopeful about..but even so,its really dispiriting to feel i am trying hard,but my legs are bigger than they were twelve months ago.
Phew I feel better for writing that down instead of it all whirling round my brain! Thanks snup xx
I agree with others,if you have dark thoughts,seek help.
It's difficult when you look around you and never ( in my experience!) see anyone else with thick ankles,swollen feet,funny shaped knees! It can make you feel isolated so please don't suffer in silence X
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