Is anyone affected by fatigue?

I have primary lymphoedema in both legs. I am a fit active 40 year old female with a managable condition having got the swelling under control. I have a family and work around 25 hours a week, so have a fairly balanced lifestyle. The worst moment for me is cooking in the evening which inevitably means standing for around 30 - 60 mins by which time I'm generally exhausted and then irritable with everyone. If I have a social engagement in the evening the following day I can barely function as I feel so very tired. I'm not overweight and walk at least 20 mins every day and thankfully don't have a job that involves standing. I'm interested to know if other active lymphoedema sufferers can honestly claim that the condition does cause some aspect of fatigue.

16 Replies

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  • I suffer with fatigue but I always felt it was the leftovers from breast cancer. I did not think it may be connected to the lymphedema.

  • Have you had a blood test lately? maybe you need iron?

  • I also have Primary Lymphodema in both legs.

    I am female aged 58yrs and I suffer badly with fatigue. I get tired very quickly.

    I cant stand at the sink for too long cos of the pressure so I use a perching stool

    this helps a great deal and enables me to still do things.

    Fresh air is good but I get very tired walking and my feet and legs swell if I have done to much. Since 2010 I have had cellulitus 4 times cos it didn't completely clear up so have the antibiotics to hand in case of flare up and take penicillin as a preventive backup.

    I massage my legs with Empaderm daily to keep the skin soft otherwise the skin gets very dry. My legs are elevated as soon as I sit down to ease the pressure and swelling even when I work part-time I have a spare stool or chair to rest my legs.

    I get very depressed at times so I have to look at other ways of doing things.

    Exercise is limited as I can not jump my feet will not lift from the floor,

    LSN say walking is good for improving circulation. Yes I agree for the normal person.

    But for me too much walking causes my legs to swell cos to walk you are standing.

    Any suggestions.

  • Hello there..

    I'm not sure if this would help. I used to feel tired whenever I used to something that involves me standing up.. I do wear garments that give me a lot of compression - purely because I used to make my own from the left over garments that I've had over the years.

    If you plan to stand and if you can take it - my advice would be to wear two garments on each of your legs. It may be uncomfortable at first but your legs will not swell as much. You have to weigh up whether you'd rather have swollen legs, be relatively comfortable during standing and suffer from fatigue or have 'stable' legs, be a little uncomfortable and no fatigue.

    I know this is some weird advice but I'm only saying what I have done.

  • hi sparkle

    i was under the impression that fatigue is a well-documented effect of lymphoedema

    i know i get absolutely cream crackered when it's a bit more congested than usual, & very heavy, achey arms if i ask them to do too much

    mine's in my arms, hands & torso but i also have other long-terrm conditions & can't stand for v long

    i use a perching stool in the kitchen - it's a stool that's angled with longer legs at the back than the front, so just takes some of the weight off without losing much height at the worktop / cooker / sink etc

    if you put 'perching stool' in somewhere like ebay you'll see the various styles - worth a go, you may be able to get one from an occupational therapist altho i bought mine cos life's too short ...!

    before i had it, i'd 'taught' myself to sit & prep veg etc at the kitchen table & just stand when i really needed to - & of course i taught the kids to load & unload the dishwasher!

    & i do find the 'doubling up' (of sleeves & gloves - can't cope with 2 corsets) helps too

    good luck, hope you find something that helps

  • Thanks for your reply, this is all very interesting. I too thought lymphoedma caused fatigue but can't find documented evidence to support this. Although it's not a widely understood condition what information is out there concentrates on the issues and support regarding the swelling of limbs so was beginning to feel that the tiredness was of my own making rather that a real issue attributed to the condition.

  • HI: It's a long time since you wrote but I'm reading thru this just now! I've had lymphedema for 54 years. About fatigue -- the materials used to say "severe fatigue" for lymphedema. But somehow through rewrites, etc. the material is changed. I liked the old write-up, I believe it was through Lymph Notes, but I never took a paper copy so its gone. I believe everyone with lymphedema will have fatigue if for no other reason than that its a heavy weight to carry around. My lymphedema turned to fibrosis and it hurt terribly if I barely touched it to anything; have new swelling on top of the fibrosis, so don't know how that will work because the cellulitis grows deep into the fibrosis. Hope you are doing better and able to find good information.

  • I personally find it definitely causes fatigue. Even my bloke will look over at me and say, you need to sit down now and have a drink. He's really helped me to recognise this in myself. Also he does the cooking which solves that other problem!! I agree a stool is the other alternative.

    I also find it can cause depressive feelings. Again this we recognise really easily. I lost my job and I'm worried about money just now, but I don't feel depressed. But then suddenly at other times in my life I'll get random depressive feelings for absolutely no reason. I'll look round for something to pin them on! We now recognise the signs of this so easily when its coming on, and there's always a little pea of blockage at a particular point in my neck. Massage this away and suddenly, I'm all instantly better and my thinking is clearer! There's a similar thing goes on with my tummy blockage, if I can afford some MLD (*sigh*) I noticed even the first time I came out and I was in an absurdly happy mood! I couldn't stop giggling at things I felt like a rush of happy even just walking out the practitioners door - even when I didn't know if it would do anything or it was £40 down the drain.

    Studying these things with interest over time it's obvious to me that as the system is so engaged in getting rid of waste around the body, when it blocks you can get hormones or chemicals build up. Ultimately we are chemical beings, it's not magic or even deeply complex science, you start diddling around with hormones and chemicals or the system that moves the waste ones out of your body and you can get all manner of quirky effects!

    I don't get the tiredness so much now but I find fatigue begets fatigue. You feel knackered so you don't do anything, but conversely slightly with Lymph that can be when it's overwhelming your body, and so the answer can actually be activity. When I go for a swim because it unblocks my tummy I come back laughing and leaping about and breathing deeply and full of energy. So we have to learn to do regular non impact exercise to beat the fatigue, but also when it's actually time to just sit down and put our feet up.

  • suzie, i completely agree that a personal chef is much better than a perching stool!

    sounds like you've got a good one there - i may pop in for dinner some time x

  • Generally speaking no, I don't suffer from fatigue and consider myself fitter than most people of my age. Occasionally I have days when I feel totally exhausted, those days are often associated with some pain in a limb which could be a pre cursor to cellulitis but, fortunately, it doesn't develop into cellulitis.

  • I can relate to you 100%. I do not work, thank God, but I am entrapped by an immobilizing fatigue. Some days are worse than others, but it is always there to some extent. I have had lymphedema in both legs after a successful battle with anal cancer in 2013. I am so thankful that the cancer is gone, but was completely unprepared for the advent of lymphedema because no one ever told me it was a possibility. Yes, I have lived long enough to know about such things, but I did not, and I am much older than you. I have tried to find other causes for this fatigue, but I keep coming back to the lymphedema because I was fine before all of this. Surely, after all this time it cannot be cancer related. I am no longer an exerciser, but I am a very active person and I have tried not to let it slow me down. I use my Flexi machine and wear my compression garments every day. Some days it is so debilitating that I crawl into bed and sleep for 2-3 hours, but the fatigue is not alleviated by rest and I end up cranky and so tired moving is next to impossible. I am sorry for being so negative, but this is the first chance I have had to vent and I fully agree with your interest in learning how other lymphedema sufferers feel about this problem.

  • I am convinced that Lymphoedema & fatigue are related.

    I'm a librarian in a middle school and work on my feet for 7 to 8 hours a day. Some days, after the drive home, its all I can do to walk up the stairs and into my house. Even on the weekend, I require a solid eight to nine hours of sleep. Anything less, and my legs (primary lymp in each leg) are painful and my thinking is less clear.

    I never leave the house without my compression stockings. I cannot imagine surviving a day at my job without the stockings. Most nights, I also try to wear my Reid Sleeve bots for a couple hours. I cannot sleep in them. Too uncomfortable.

    I am overweight, though, and have been eating very healthy and trying to incorporate exercise into my evenings but being on my feet all day & the accompanying pain, plus the time in the boots, plus the needed hours of sleep--where can I find time to exercise? I find it all so frustrating.

    It's comforting to hear that others are having similar problems. Lymphodema can make you feel so very alone.

  • Hi Sparkle 10 i know your post has been up a while ive only just joined the forum and thought

    id reply anyway i hope things have improved for you since you posted your problem.

    I have secondry lympheodema in my right leg and grion area i suffer badly from fatigue.

    I dont sleep well but never have even before my cancer, some days its like walking through

    water. I wear compression have massages weekly and i cycle 40 mins a day and im normal

    weight. Some days its hard to do the normal daily tasks as im so tired but i make myself do

    them but its tough i definatly think theres a link x

  • Wow I could have written this post but I'm 39 :) I have primary lymph in both legs, abd, trunk, and left arm. I've had tons of tests and they are normal except my protein is low. This severely effects my life as there are days I can't leave the bed. I'm a wife and mom ! I am trying everything I can think of but nothing seems to help. I hate the thought that I can't do things for myself like I used to. I really wish they would research lymph further. Fact is, most Drs don't know.

  • Yes Lymphoedma leads you to being fatigued and depressed no matter what you do in your life it catches up with you.

    I know I have had this illness for over 50yrs.

    I have to use a perching stool at the sink anything to keep my feet off the ground as the pressure is too much in my ankles now I have pain in arch of my foot in my ankle up my leg to my back and neck and across my shoulder and in my arm to my wrist perhaps there is another unlying condition that I do not know about. Codine and Amtriptyline are not helping my ankle, leg and back feel they are being strangled. I keep mobile the best I can but I need to rest a lot cos of the pain and to reduce the swelling.

    Some days I feel why am I putting my body through this?

    So reading, watching tv or doing colour therapy helps me to relax cos this can be done when resting with legs elevated.

    What do others do to relax the mind?

  • Have you had vitamin D test? Low level often found with lymphedema.

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