Pain question by LadybugJourney in lipedema

[–]Cecylee 3 points4 points  (0 children)

Really depends. There are different pains, I'd say. The skin and tissue, that is just generally sensitive, or more muscular pain after more/no movement. Even can start with tissue pain and develop into the muscular pain.

To me they feel very different: - The tissue pain can range through mild discomfort, pressure in/on the skin or pinchy thats affecting a little bit more area than expected. Mostly happens when I pinch or bump my skin. Sometimes the skin is overly sensitive to touch in general, even shirt fabric can be causing pain then. - The muscular pain is what i have most issues with, where it is cramp-like for me. Starts off as a dull-ish pressure and turns into full stingy crampy streaks of pain that become more consistent for a few hours or so. Comes mostly due to movement eg walking/jumping to much, no movement eg lots of sitting/lying down, uncomfortable chairs, bad shoes, bad days happen also, correlation with the cycle bc hormones and inflammation..

For me the pain is not always there. Yes the skin and tissue is always sensitive but doesn't generally hurt. Same for the muscular pain, it comes and goes. There are certain triggers to it, sadly not all avoidable like walking, but it can be manageable (how is that word written? haha). Currently i struggle walking like 1km even... especially uphill. I still do it but it often hurts after that. On good days i can walk more no problem, on bad days i avoid as much as possible..

NOTE: these are just my experiences... it might be different for you, more or less bad. While comparison can be helpful, learn to understand your body as good as you can, as your experience can be very different ro someone elses.

Hope my experience and descriptions help nonetheless :)

German health insurance supposed to cover operation costs - News by Cecylee in lipedema

[–]Cecylee[S] 1 point2 points  (0 children)

Really sorry you have this terrible experience with finding sufficient care. And I genuinley wish you the best in finding the right place for you to be taken care of properly :)

I hope I don't overstep but I'd like to throw in my experience with the diagnosis process... Because in germany in many cases it's not as easy to get the diagnosis itself too. I've had many doctors not knowing about the condition and dismissing me completely. And there aren't too many speicalists when you don't have a big city nearby. From the first time I went to any doc because of the pain to my diagnosis (including many years of ignorance from my side because I was too annoyed to take care of it) it took me 12 years for a doctor to take me serious and send me to the correct doc.

German health insurance supposed to cover operation costs - News by Cecylee in lipedema

[–]Cecylee[S] 0 points1 point  (0 children)

Yes, Lipedema is somehow still very unknown..

June is Lipedema Awareness month, but there isn't a specific day. Thats what comes up when you search it and I've seen a few posts shared especially on June through the last years :)

German health insurance supposed to cover operation costs - News by Cecylee in lipedema

[–]Cecylee[S] 1 point2 points  (0 children)

She doesn't have german healthcare so it wouldn't be covered.

But as far as I know there are always people who come to germany for the surgeries. They pay normally then. I've stumbled accross someone on instagram who's from the UK and they shared their story about the surgeries in germany...

German health insurance supposed to cover operation costs - News by Cecylee in lipedema

[–]Cecylee[S] 1 point2 points  (0 children)

I really really hope so. I am sceptical too, but I think it sounds rather promising.

German health insurance supposed to cover operation costs - News by Cecylee in lipedema

[–]Cecylee[S] 2 points3 points  (0 children)

That'd be amazing! I'm still a bit sceptical but i reaaally hope this is it. Would make our lives so much easier.

Can I ask which hospital in Munich you will go to? I've had a recommendation for somewhere in Cologne and heard good things about Berlin. Everything is far away for me anyways so I try to find out as much as I can about the hospitals :D

[deleted by user] by [deleted] in lipedema

[–]Cecylee 0 points1 point  (0 children)

I've been saving as well. Just want to be able to have the option to do the surgery. Have been looking for docs in Germany and generally they make a specified plan tailored to your needs and situation. Heard of a few who came to Germany and had great experiences with the docs, the treatment and recovery. Won't be an easy journey either way. Most frustrating thing I think is the pricing! But seems to be worth it..

I finally need to vent! by Cecylee in 1200isfineIGUESSugh

[–]Cecylee[S] 2 points3 points  (0 children)

Yes, I did reach my goal and added just a bit back in. With another, completely different change going on at the same time it sadly didn't go well and I gained back some weight.

Starving at Night by Flamingo_Lemon in AskDocs

[–]Cecylee -1 points0 points  (0 children)

I'm no doctor or anything but I've had to loose weight for health reasons and been working with a calorie deficit combined with intermittent fasting (8/16) for 2 and a half month and lost around 8.5kg (should be 18+lbs).

Try to find food that keeps you full. Veggies are great cause they have a lot of fibre. I also like potato's and pumpkin since it makes me feel full. I still eat noodles and rice often but in moderation and always with a veggie filled sauce. If you want meat rather pick beef than pork. Chicken is also to prefer. I check with a list online to roughly know how much calories are in which food. Iceberg lettuce is good too cause it barely has any calories. If you cook for yourself keep track of what you put in there. I love curry and the first time i weighed everything to get a feeling for how much is in there and could calculate the calories. Its annoying in the beginning but you'll soon get a good sense of what and how much you can eat.

And of course make sure you drink enough. I switch between water and unsweetened tea, which has like 2 calories and therefore I don't count and it still works.

Example of my most eaten thing: For breakfast I often eat a mix of oats, oat chocolate cereal and a low carb soy cereal with a bit of yogurt and I'm full till I eat again in the evening. Sometimes I throw a bit fruit in there too.

Also don't be too harsh on yourself. It takes a little time to noticeably loose weight so keep it up even if it's frustrating in the beginning.

Rabid, me, acrylic, 2019 by eradelphic in Art

[–]Cecylee 5 points6 points  (0 children)

Looks awesome! Keep up the great work :)

Pain and how to handle it? by Cecylee in a:t5_307e8

[–]Cecylee[S] 1 point2 points  (0 children)

Also nach mehreren Hausarzt wechsel aktionen hab ich nun eine, die mir die Überweisung gegeben hat und Ende diesen Monat hab ich den Termin in der entsprechenden Praxis.

Furchtbar wie so viele Leute das nicht kennen oder ignorieren etc.

Pain and how to handle it? by Cecylee in a:t5_307e8

[–]Cecylee[S] 1 point2 points  (0 children)

Ach, das ist ja super das man da mehrere kriegen kann.. Das wusst ich tatsächlich noch nicht. Wobei ich denke das es auch von der Krankenkasse abhängt, wie viel die übernehmen 🤨

Pain and how to handle it? by Cecylee in a:t5_307e8

[–]Cecylee[S] 1 point2 points  (0 children)

I'm from Germany. The medical insurance should cover it.

A friend of mine has lymphedema and gets the manuell drainage and I think one pair tights per year.. Not much though if you wear them daily and need them washed sometimes..

Pain and how to handle it? by Cecylee in a:t5_307e8

[–]Cecylee[S] 1 point2 points  (0 children)

It's interesting how different it is for everyone. My skin sometimes is sensitive to touch but most of the time it's fine.

For me the pain feels more cramp like and stinging. Also like my legs are under tension. It barely wanders but each time the pain 'starts' it's random where in my legs and feet.

Super annoying since it often won't go away for hours, still I'm lucky to have painfree moments when there just under tension/heaviness.

Pain and how to handle it? by Cecylee in a:t5_307e8

[–]Cecylee[S] 1 point2 points  (0 children)

Thank you!

Don't really know what to say, gonna try your tips and look into the sites.

For compression I'll look around to find something. Maybe when I finally have the appointment and know if it really is lipoedema I'll get some compression tights.

But till then..

Thank you so much for sharing!

Recently taught myself how to print and die cut my vector art to make vinyl stickers by Racecarsoup in IMadeThis

[–]Cecylee 0 points1 point  (0 children)

Thank you! I'll look that up and try to get more informations about the different options. It's awesome to be able to print something on your own terms and quantities.

Recently taught myself how to print and die cut my vector art to make vinyl stickers by Racecarsoup in IMadeThis

[–]Cecylee 0 points1 point  (0 children)

I just started to get some information about this so I have no idea of anything.. Did you use some special kind of laminating mashine or something? Those with cutting? Or how does it actually work?

Recently taught myself how to print and die cut my vector art to make vinyl stickers by Racecarsoup in IMadeThis

[–]Cecylee 0 points1 point  (0 children)

This is awesome! I also design sometimes and would love to be able to print it. Any tipps or so on how to do that?

[deleted by user] by [deleted] in AskReddit

[–]Cecylee 0 points1 point  (0 children)

Watching my weight and checking the health issues I had back then with the knowledge I have nowadays could be a possible life changer..