Help with acceptance?

[Ola22]

Hi, just newly diagnosed with right leg lymphedema and really struggling to come to terms with it and daily compression management etc. Anybody in the same boat and any advice?

[Erika_N]

It takes time hun. I was the same i felt angry cheated, overwhelmed, frustrated, upset bit its completely normal and oart of the process. Im 7 years innand stull get those feeling when my legs flair up. Best advice i can offer is do as your nurse advised you exercise but nothing high impact i find works and rotate exercise plans eat well and clean it deffinatly helps notveaying dont have drinks or naughty but be sensible. Sumner will always beva nightmare so put compression garments in the fridge and i can mist mine with water to help cool my legs while wearing them. Its hard work but try make time in your daily routine to do manual drainage on the leg and kerp the skin clean and well moisturised . Keep these simple things as your foundation and it will deffinatly help and is managable its a lifestyle change but it works x

[GabbiD44 in reply to Erika_N]

Such great advice! I 100% agree with it all

[DeborahS32]

Hi there, you don’t say how you’re affected so maybe your experience not similar to mine. I have moderate to severe primary lymphoedema in my right leg. I wear a full leg made-to-measure grade 3 stocking and foot glove.

Mine started in 2016 out of the blue and it took several years before I got correct diagnosis, by which time it had got much worse. However, it’s now really well controlled and so far I haven’t had another bout of cellulitis for about 4 years.

It was hard to come to terms with, but I read up everything I could find and this site was v helpful. I’ve been really careful to wear my support stocking every day all day, because it definitely helps. Good skin care essential. I try to have a longish walk every day (aiming for at least 10k steps but usually much more), and try treat it like a doctor’s prescription.

At first I was very self conscious about the stocking and wore full length skirts. Then I saw a woman wearing an arm sleeve - she looked chic and elegant, and inspired my to carry on dressing like me. I’m now completely ok about how it looks - not a thing of beauty, but it’s the tool that helps keep me well and able to do almost everything I would normally do.

Give yourself time, and grieve and let go of who you were, and work on being who you are now would be my advice. Educate yourself about how best to care for yourself, and prioritise that.

I wear glasses and hearing aids, and for me my support garment is no different from those.

All good wishes to you. It will be fine, be kind to yourself.

Deborah

[Sue737400]

Hi,

I don’t think that I/we will ever learn to accept it, but rather it’s a coming to terms with the fact that this is life’s new normal. Lymphoedema and it’s management is undoubtedly horrible and the best way I have found to manage it is to work hard from both the physical management perspective and by working on my mental health. The best way I have found to manage the physical is to be compliant with the regime that works best for me. I pump twice a day, I wear compression everyday and I do MLD every day. It’s tiresome but at least it gives you a degree of control. Being diagnosed with Lymphoedema can give you a sense of no control however this really helps me. I have also taken steps to manage the accompanying anxiety and depression that can go with this.

Maintaining physical fitness is also super important. The more you move, the more you have control. The temptation is to do nothing but you are way better off if you don’t.

I hope this helps. Much luck 🍀

Regards

Sue

[GabbiD44 in reply to Sue737400]

Wow! MLD x2 plus pump x2? That is amazing! Good point to treat it like a prescription!

[Ola22 in reply to Sue737400]

Hi Sue,

Thanks for this- what is the pump you refer to?

[Sue737400 in reply to Ola22]

Hi Ola,

I’m referring to a Lymphapress. I have the full body attachment and also just a single leg attachment. Both work really well and I find the single leg works really well for when I need to multi task as it’s really hard to lie in the full body suit when trying to do other things other than read or watch television.

Regards

Sue

[Bbish in reply to Sue737400]

Hello all. This is my first time posting anything but I can definitely relate to Ola. I am still at the stage of getting to grips with lymphedema in my left leg. I cannot except that my leg might just continue to get bigger!! I too am finding it difficult to get compression stockings that fit properly and would like to try bandaging. I have never heard of a pump. This has not been mentioned to me at all. How do they work and where do you get them . Lovely to hear from all you lovely brave people. ps totally agree with the person mentioning the shoes!! x

[Sue737400 in reply to Bbish]

Hi Bbish,

I have provided a link to the Lymphapress website as I think this probably can explain things better than I can

lymphapress.com

Basically, the Lymphapress will help to keep your limb softer so that you are more comfortable when you put your compression on. I also do self lymphatic drainage while in the pump to try and keep the fluid moving.

Regards

Sue

[Bbish in reply to Sue737400]

Hi Sue. Thank you so much for the link. I’ll take a look, sounds good to me . Anything that helps!!

Thanks

Lynn

[Lymphet]

Hi Ola22

Snap! I too have lymphoedema in my right leg. Since 2017, but 20 years after cancer operation. It takes time to adjust…..but let’s face it it’s better than the alternative, so be brave and positive. My best piece of advise and the thing I suffered most with was finding a pair of shoes that fit on both feet, because keeping moving is essential.

I tried lots and really struggled, but as time goes by you become more confident in what you wear and like DeborahS32 I look more like the old me.

Thinking of you Lynda 😜

[GabbiD44]

Hi! I was diagnosed with primary lymphedema/lipedema in 2017. I wrapped for 3 weeks and then moved on to flat knit custom order knee high socks. I have been pretty well controlled until this year in April when I fell and my leg swelling flared up and has been hard to get back under control. I only now have been taught MLD and have received a pump that I try to do everyday but sometimes life gets in the way. One of the other responders mentioned treating it like a prescription, that is great advice.It is hard to come to terms with it, the way you feel in the summer, the inconvenience of it all. But then I see people out and about with very obvious circulation problems, lymphedema, and skin breakdown, and I feel fortunate to have been diagnosed and the knowledge of what I can do.

This group is great too! Good luck!

[Lymparmy]

I have both legs and right arm affected by lymphoedema. I cannot get a good fitting stocking despite trying many. I wear a sleeve most days and do exercises and stretching every day. I use a pump 5 times a week. Once a week when the mood takes me I wear no compression and forget all about it which seems to do me good mentally. Look after your skin especially when gardening and in sunshine. I feel lucky to be alive and blessed to live a reasonably active life. Look forward to each day. A positive outlook is the best way. Be happy everyone

[Laurelin]

Thanks 4 your question. Lymphedema hard to accept. Have had Lymphedema in left leg since 2000. Had Cellulitis in left foot 3 times, which led to Lymphedema. Now have Lymphedema in both legs, genitalia, abdomen, underarms. My feet, legs, genital area & underarms always feel wet. However, the wetness I'm feeling is on the inside of my skin -- not on the outside. My socks & compression stockings, though, at the end of the day are either damp or wet. So, my feet are "bleeding" moisture. Have seen Lymphedema Physical Therapist once & she showed me how to do manual Lymphedema drainage. So have been doing that in the morning b4 putting my compression stockings on. Going 2 look in2 Lymphapress. Also have Achilles Tendinitis in left ankle, which complicates things. My ankle tends to swell from that condition! Also have Fibromyalgia, Overactive Bladder & Fecal Incontinence. When I pee, it feels as though the urine is running down my legs. When I drink fluids, my feet feel wetter. Have to drink enough water to avoid getting a bladder infection. Having Fecal Incontinence predisposes me to U.T.I.s (Urinary Tract Infections).

[HazieC]

Hi I get what you mean, I’m unsure how long I’ve been diagnosed for as I’m still not happy at accepting the situation. Over the years I’ve managed it in different ways and I’ve found gentle exercise to be really helpful even if it’s just slow pace walking on a treadmill. I’m at the stage where it has become a part of me and I do what I can do to reduce flair ups but also recognise that sometimes I am just going to have one of those days. Give yourself time and do what’s best for you x

[walk]

I was diagnosed last summer with lymphodema in my left leg and foot only with no logical reason for it. I was upset and determined to get to the bottom of it but the dawning eventually come that what your nurse suggests and prescribes is the only treatment. Compression garments (properly measured by your lymphodema nurse) worn daily, lots of walking and foot movement when you can, and keep your leg elevated as much as possible. And the occasional MLD if that works for you. This summer I found I could go without my compression sock during the day if I want to wear shorts or a dress as long as I elevate when I'm relaxing. I have even painted my toe nails again. I make sure I always use insect repellant on that leg for fear of being bitten and moisturise twice daily. Good luck, and regularly visit this forum.

[On_porter]

Sorry to hear you are struggling. My blunt advice is to do everything you can to wear your compression. If you dont, it WILL get worse, and you will get infections and end up in hospital. The advantageous of wearing compression, to keep the swelling at bay, far out weigh not wearing it. Oh, and try not to let it affect your day to day life and keep smiling. If you don't, then it'll affect your mental health is well! By the way, this is coming from someone that has lymphoedema everywhere. Not just in one limb.

[On_porter]

I should also add that swimming is the best form of exercise for lymphoedema

[Angelil]

Hi Ola

Sorry to hear you are feeling this way but I can completely emphasise with how you feel. I was diagnosed with lymphoedema in both thighs and lower abdomen 6 years ago following cancer surgery. My swelling is mild but widespread. I found it really hard to come to terms with the diagnosis (probably more than the cancer strangely). It didn’t help that family and friends were just grateful that I was still here following the cancer and I didn’t feel like anyone understood how I was feeling about the lymphoedema. I couldn’t help but imagine the worst for my future (probably not helped by google) and hated the compression garments.

However - as the saying goes- time is a great healer. I made lifestyle changes such as healthy diet, regular exercise (swimming really is the best), started yoga and got into the routine of massage and compression and the condition has not progressed and I probably look and feel better in general for all the changes I have made. I have made alterations to the style of clothes that I wear ( with the help of a shopaholic sister) and now dress in a different way but i often receive complements on my clothes so maybe the change is for the good! This forum is also a godsend for advice on management or even just to have a little moan!!! I’ve asked loads of questions over the years and always receive a helpful response.

Over the years I’ve gradually accepted that lymphoedema is part of me now and don’t fixate on it like I did at first and I’m sure in time you will feel this way too. Just remember to be kind to yourself along the way and try not to stress about it too much (easier said than done I know!) xxx

[DeadfootMo]

Hello Ola22, I have suffered for around 6-7 years now with this problem, but I have good days and bad days. Sometimes, I even have a good season now and then but this is mainly winter or spring. I don't like the heat any more as not only does this increase my swelling but it also triggers off my eczema and sometimes infections of the skin layer, particularly near joints. I have also got issues with compression as I simply can not get this on easily even with equipment. But because of how my body does not adjust to it and it is likely to feel worse I give it a miss. By worse I mean real pain, severe pins and needles, a complete cut off in my circulation, extra ridges in the folds of my skin and then on top of that redness and soreness. If I have eczema compression is not suitable as the ointments, creams etc all need to be applied on a regular basis. So if you are going through any of this, I hope you can find ways to make things easier for yourself.

[Perido]

Hi Ola22, I've had secondary lymphoedema (LE) extending from my right hip through right leg to foot since 2017. Initially I felt loathing and fear about the disease but I eventually realised it was best to accept it and get educated about how to deal with it.

I asked my GP to refer me to a lymphoedema clinic and I committed to the 4 cornerstones of LE management: compression (worn daily), skin care, exercise and MLD. The biggest challenge for me was getting compression garments that controlled my swelling. I discovered that off the shelf circular knit stockings (mainly only useful for vein issues imo) don't work for me. 2019, after much trial and error I acquired a prescription for a custom made class 2 flat knit thigh length stocking that fits well and has preventing my swelling from getting worse. I also wear compression toe caps which are very effective. I've yet to find a good compression solution for my hip/buttock.

With hindsight I wished I'd known about LVA surgery when I was first developed symptoms of lymphoedema. By the time I found out about the surgery my lymphatic vessels had deteriorated to the point they were no longer suitable for anastomosis with a blood vessel. See link for further information about LVA surgery: olp.surgery/understanding-l...

[belle1958]

Had symptoms a long while but only recently diagnosed.Good skin care..elevate whenever you can .

Its a horrible condition isn't it