Generally feeling unwell with Lymphoedema? Normal?

Hi, I'm 28 and have primary Lympoedema in my left leg, ankle and toes, which was only diagnosed in January this year. I wear toe caps and sigvaris compression stocking. I've been feeling so run down! My doctor explained yesterday that I probably feel so wiped out after long, busy weeks and days. I can go for a little walk and do some gardening, cycle from a-b but the next day I feel so drained, run down and heavy. I've had a cold sore that has been recurring for over a month! I went on a holiday and did lots of walking, I was a zombie for over a week. I've never felt so lethargic.

Is it normal? Is the fact my lymphatic system doesn't work properly that could be causing me to feel run down and constantly feel like I have an infection?

41 Replies

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  • Sorry, doctor said most likely feeling rundown is due to being lymphoedema sufferer

  • I have primary lymphoedema and it hasn't affected my general being. I don't believe it should. Some may say it does for them, but I don't believe that generally it should.

  • I also feel tired with very little energy tried taking B12

    s a little help but not much prone to picking up colds low immune system and legs hurt to the touch..I do things at a slow pace am now using an electric cycle while I sit down where the machine does the work..wish there were some thing I could take..any ideas?

  • I take a teaspoon of black strap molasses (from health food shop) daily, it's gross but you can wash it down with something tasty or dilute it in seems to help!

  • will try that next..I am also takin tumeric and Ashwanda root it helps a little

  • Well it affects my welkbeing sorry but affects others differently, pain everyday and everything to low self worth/esteem :(

  • For the longest time, I did most everything everybody else did and would have some days where I didn't feel so well, but now, as I am in my midseventies, I become ill ans perspire profusely after the slightest exertion! If our lymphatic system doesn't function properly, where do all the toxins go? Thus we don't feel well at times. Hope you feel better. Just have to pace ourselves.....

  • That's what I think, where are all the toxins going? The cycle of colds, viral infections especially cold sores seem evidence enough my lymphatic system cannot help me like I need it to!

  • This is normal - but comes becaus NHS is so bad at handling Lymph. We don't get the care we should, and best help I got was from my MEP in Brussels (MP was useless and just repeated NHS line); being based in Brussels MEP was familiar with Belgian healthcare system, and wrote indignant letters to NHS quangos on my behalf and got results/

    I am now under care of L/ Nurse who was trained in Hungary, knows the NHS and its limitations, and can give me sensible advice about what I can get from NHS. and where it is better to pay and go privately.

    You are not alone - have every right to shout about our bad care. but sadly I sit on a couple of paid NHS committees, and the service is relying more and more on patients paying - however much we patient reps scream, our voice is very small!

    Good luck - and shout away!

  • This is aa good reply and if you scroll down to my post under the name craftinglady you will see that i agree with everything here. The NHS is getting better as usual it depends where you live.We need to demand more and sometimes we will get more .

  • Hi x I felt the same when I was newly diagnosed but the dry also told me the same was unrelated kept getting one thing after another. Never did find out if related or not can only think as I felt depressed with diagnosis maybe I was more open to things. A year on not too bad with this but awaiting diagnosis of Fibro for pain .... Tracey

  • Hi

    I've had this. I do some volunteering which means I can be on my feet for long hours and doing a lot of walking. I would feel heavy and shivery at the end of the day, unable to get warm and don't recover til the next day. I asked my GP if this was related to my primary lymphoedema (along with the profuse sweating in the summer, which another responder mentioned) but he was nonplussed and no help. So I just put it down to being unfit and out of condition! I too wonder where all the toxins go and reiterate how little general practitioners seem to know about lymphoedema

  • It stands to reason that since the cleaning that the lymphatic system is supposed to do for our bodies isn't happening, those toxins become stagnant in the body and wreak havoc. Also, the thyroid (hypothyroidism=low thyroid function) may account for low body temp, causing some of the things described. One autoimmune condition may mean more than one

    may be at play in the body. I have the same things you describe.

  • Thank you for your responses! So much better knowing it's normal. I don't like moaning about our health services because I know they do their best.

  • I do not give medical people a pass on not helping me. They do not get it so they just shrug it off. More needs to be done.

  • Agreed more should be done. It would be nice if we could go to the GP with a problem we can feel is related to our lymphodoema and not end up feeling like a hypochondriac. I'm going to get referred to a lymphoedema clinic so hopefully will get more answers to questions like these. It can be a very isolating condition, I'm sure others have found this.

  • It certainly is isolating. Explaining it to friends and having to wear one stocking in the summer is the worst! People stare or just can't understand the condition...even doctors!

    My lymphoedema clinic is really far away, I can't visit regularly only every 6 months to have the stocking measured down ( I've yet to do have this done since I only started wearing it in February)

    I've tried raising awareness through my facebook, but immediately got "why does everyone need to know this?"...I deleted it and removed someone who was once a good friend and suffered a life long condition himself, and have been afraid to speak out ever since. My confidence has been rattled and it disturbs me in the most intimate of moments :( I bet everyone here gets fed up sometimes. So many interesting and varied stories on here. My lymphoedema said you would all be so understanding and the LSN was my friend now!

  • You are so right about people who may have their own health probs but this forum is ideal for us L..sufferers as we are all in the same boat and it is good to be able to share all our concerns and maybe get some light hearted ness along the way goodness knows we could all do with a bit of a laugh now and then it sure helps.πŸ˜ƒπŸ˜€πŸ‘πŸ™‹πŸ˜ͺ

  • I'ved had swollen legs/feet for years but have only recently been diagnosed with lymphoedema. I'm nearly 60. Left leg worse than right. I have knee high compression garments now which help with the aching, but I feel ill most days. No energy, sweat at the slightest thing, get out of puff, wheezing, hair thinning, feeling cold etc etc. I've lost who I once was. Clinic just tells me it's because I'm overweight. No drainage massage or anything like that offered. I'm very grateful to NHS for giving me the compression garments and cream for dry skin, and I'm grateful to have a Lymphoedema Clinic at all - some places don't have them. However, the service is under threat due to cuts. I've also had cold sores recently too. There isn't a lot of understanding going on. Husband tells me I just need to walk more (if only!) and my adult children don't take it very seriously. I feel it is some kind of auto immune disorder as body is attacking itself. I feel and look much older than my years and I tired of people telling me it's "only a bit of swelling" nothing serious. Hmmmm.

  • That's exactly why this forum is sooooo good for people like us we can support each other by coming on and having a rant or just a chat about this and that to like minded people it should make all the difference I know it has been helpful to me just reading these posts and finding just how inspirational we all are to each other. After all we are the only ones who can fully understand what living with this condition really feels like. Chin up onwards and upwards for us. Best wishes Dodi.xxπŸ˜ŠπŸ‘πŸ™‹

  • for cold sores I a take Lysine and have fund that vitamin E cream helps my dry immnue system is not up to par but I have Hypothyroid issues and am diabetic so I do the best I can. I wear light compression stockings as my legs hurt to the touch but keep in touch with friends and family and watch comedy shows and films to tak my mind off of this..had to give up my car but am now using a medical scooter..praying research will come up with all are very brave as this is the only issue most Dr's do not treat or know i do my own research..

  • I absolutely agree I have to keep my mind occupied the best I can as this condition can take over your life if you let it ,yes I love to watch things that make me laugh and be with people that understand me,and thank god for those scooters that is the most precious thing to me and all of us goodness knows how we would feel if we didn't have our bit of freedom,well I do know really as I was housebound for yrs before I was able to get one. Please excuse the way I write I never know where to put my punctuation marks I just babble on lol lol. Hope we all have a good week. Best wishes Dodi.xxπŸ˜ŠπŸ‘πŸ˜ƒ

  • Have you been tested for an underactive thyroid? I was diagnosed with primary lymphoedema 29 years ago when I was 20. I think I’ve coped with it pretty well throughout my life despite NO help, treatment or support from my doctor. Up until a couple of years ago it caused me pain and discomfort, particularly in the summer, but didn’t affect my general wellbeing (except for the self-esteem issues). However a couple of years ago I was feeling increasingly tired with aches and pains in my whole body. My doctor tested my thyroid and it showed me as hypothyroid. I’m now on levothyroxine every day and it has eased the symptoms to a certain degree but I still don’t believe I’m optimally medicated as yet (hypothyroidism is another neglected and deeply frustrating condition but I won’t go into it on here...) I understand it is quite common for people to have both lymphoedema and thyroid issues as they both tend to be auto-immune conditions (as is fibromyalgia which I also have). I hope you find the answer and feel better soon but please go and get tested as it may make all the difference.

  • I also have problems with Hypothyroid but was allergic to the medicine am now fighting an autoimmune disease that has not been diagnosed properly I cough up a half of a cup of phlegm every morning and run to take a Benadryl to dry me up also have joint pains and back issues and no longer walk without a walker or wheel chair as even exercises is tough would like some info on blood tests for autoimmune and what kind of a specialist treats this as my Dr's are blaming it on my Lymph and thyroid and diabetes..very frustrating am trying to look for that special Dr. here in Miami Fl,,would welcome any advice...

  • Hi their sorry for the late reply I am still trying to come to terms with the loss of one of my younger brothers whom past away only recently in sept. And so I have not been in touch with my freinds and family very much ,but I think I have to make a start it's no good locking yourself away as I have been doing it only makes it harder to bare. I do hope you have been feeling ok and not in to much pain.......I am just getting over a flare up of psoriasis on my lymph/leg and my head it's been a nightmare luckily I changed my creams and it has helped a lot....I changed my steroid cream for E45 specially for eczema and psoriasis and for moisturising all my body I was recommended royal Royal Jelly all over body and the wash and Hand and nail cream well I have to say I only wish I had tried it sooner it is even psoriasis freindly too. Oohhh now my body feels like smooth as silk and smells gorgeous to. You can get royal jelly capsules to take as well but I've not gone into that yet but will be googling them today as holland and barett sell them. Now I just need to get some good knee support as they are very paiful when I bend them I do need replacement kneecaps but I'm to much over weight so they won't do it yet,plus I need to get this Hernia sorted out as well but need to lose weight for that too the doc says. Thank you for the tip about thyroid problems I'm sorry to hear you have it my mum had both Under / then over thyroid so they tested me for it last year and it was negative. Well I suppose I had better close now as I will be chatting driving you mad all day if I'm let!! Ha ha.πŸ˜€. Bye for now take care DODI.xx

  • I've never been tested for anything apart from a blood test last year which showed I had abnormally low folic acid levels, I definitely keep on top of my diet and include everything I can with it in.

    My cousin had lupus and Raynaud's phenomena and we recently discussed there might be a possibility it is in our genes on the female side and also a disease called fabrys.

    It's hard to push for tests, I feel like most doctors either don't understand or take me seriously. I'm also due a PIP assessment and I'm scared they will think I'm not entitled to it...I'm quite scared!

    I got a letter yesterday for an appointment for a lymphosintigram! At least I will be able to prove I have this condition. Has anyone else experienced a pip assessment? I'm also being assessed for chronic depression and complex post traumatic stress disorder as well as lymphoedema

  • Let us know how you get on for your PIP assessment as I have been told to apply but unsure of what to expect

  • Hello. Just read your post and wondered how you are doing now. I have just been going through an assessment process and have been told that I have PTSD ( not a surprise as I used to be a mental health professional but that takes is off on another tangent!)

    How did you get on with your Pip assessment? Not quite sure why but your post resonated with me and as I say just wondered how you are. Hope all is going in the direction that you wish for !!

  • Ye gods when oh when will the NHS listen to LSN and BLS and actually get all GPs to take the on-line module and get up to speed on the complexities of a doowally lymphatic system? Our NHS is probably still the best in world at 'free at the point of care' but proper joined-up thinking seems to elude the bureacracy, so as others have noted, we need to fight, involve MPs, MEPs et all, learn about the various bureaucratic routes to commissioning and decision making in our four nations and become experts on our own condition(s).

  • Really enjoyed your style and reading this! Thank you, it heartened me!

  • Lovesradio.....comment re style was meant for you. Not sure it worked that way. Would very much like to join forces.

  • Hi Tav1, thanks, where are you?

  • I absolutely agree, something needs to happen to educate the world about this chronic disabling Health Issiue their are millions of us out their just being coaxed along with our problems it's time we were heard I can't believe that how little docs know about the lymphatic system as it plays the biggest part in how our bodies work why for goodness sake are they not doing anything about it. Hope you all have a good week what ever you do. Best wishes Dodi.xxπŸ˜ƒπŸ˜€πŸ‘

  • I understood how you feel, I was diagnosed with primary lymphedema in both legs 3 years ago after a 19yr fight with the NHS. You maybe feeling unwell due to the realisation that your dealing with a long term condition as that can effect your mood and make you feel generally unwell. Speak to your nurse, she may recommend counselling. My legs are sore to touch after a busy day. I.e.; swimming,dog walking and general day to day work / activities.

    Hope you start feeling well soon.


  • Hi their yes it's a terrible thing to have it makes you feel paranoid about that part of your body, with all the DOs and Donts the weather the cuts and and skin problems watching out for insect bites and such so as it won't become infected and turn to cellulitus it takes over your mind until you can't concentrate on just living and with the added arthrities and unable to walk to far and with sticks it can make us more depressed than we already can be. I've been attending the lymph clinic for yrs and yrs but to no avail as my skin will not tolerate any kind of commpresion or bandaging which I've tried but has failed due to my psoriasis all the materials just made it worse. Anyway just like yourself we just carry on trying to make the best of what we do have lol lol . Must go now and put the cream on lol .Take care

  • I have Lympoedema in my lower legs, feet & toes.. I find I get tired easy, I suffer from depression, suffer from cold sores & pick up every virus.. I just get told it is my weight and try Lose some is so nice too read everyone else's symptoms and not too feel so alone thank you.

  • Hi Sarah ...hope you've Been feeling better than of late I'm still battling with my legs feet n toes and the dreaded weight probs no one knows just how hard it can be having multiple health Issiues one at a time is bad enough isn't it Sarah! Let's just hope we have at least a couple of days that are good ones out of seven 😊.well must go now going to go shopping on my scooter thank god for them otherwise I'm snookered . Bye for now Dodi.πŸ™‹πŸ™‹

  • I have felt run down all the time I take vitamins also a B12 to pep me up I get cold more often and tired I have also developed an autoimmune doing the best i can in trying to keep busy..

  • Keep your chin up we are all in the same boat please don't feel alone we all can talk about are probs on this site we just need to feel like it as I know it sometimes is to hard to even talk about whats bothering us ,but at least we do reply to each other when we can and to reassure each other that someone understands where were coming from. Like you I try to keep busy so let's do whTever we can to stay that way . Hope to hear from you soon take care.Dodi.πŸ™‹πŸ™‹

  • Thanks for the pep talk am seeing another Dr on thursday hope he has better news for me as I am doing the best i can with my everyday chores but depression sets in from no where learning to live with this is not easy..

  • Yes I know it all gets a bit to much to bare and it makes you think what the hell is really wrong with me , and the weather don't help either and the television is another depressing thing and those stupid ads this is me moaning all day unless I can get out I am a complete nightmare .And all the time I'm in pain with wherever I have a joint which is pretty much everywhere I am writing this as I lay on top of my bed which is the only place I get some relief lol lol. Ok I must go I've taken enough of your time up .Stay possitive hope all is ok with you. Best wishes Dodi.😊

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