Is the pain I have a 'normal' part of lymphoedema?

I have recently been diagnosed with lymphoedema after months and months of swelling and numerous medical investigations re the cause. I know that I am very lucky to get such a quick diagnosis and am gradually finding my way through the maze. I have been referred to a specialist clinic for bandaging and then being measured for stockings. I am struggling with footwear but have been told to wait till I get the stockings fitted before buying any more shoes. I am currently wearing crocs in 2 different sizes but am getting fed up with wet, cold feet.

I can (just about) deal with all of this but I am in so much pain, and it is seriously getting me down. Is the pain normal and does it improve? I am on strong painkillers and sometimes they don't have any effect but I can't take anything stronger and still function. Will the bandaging and stockings reduce the pain, is there anything else I can do to help? I forgot to say my lymphoedema is in my lower left leg and foot and the pain is mostly in the ankle and along the top of my foot.

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  • I suffer from primary lymphoedema in both legs and feet. I also live in Crocs like you. I have the regular ones but I also have a pair of the ones for diabetics (Crocs Rx I think they're called). They have higher backs, not so many holes down the sides and extra over the toes (so it cushions the blow if you stub your foot on something!) and I find I don't get my feet wet so much. In winter I have a pair of the Mammoth ones that have a fleecy lining to keep my feet snug and warm. The Mammoth ones don't have holes in the sides but they do on the top. For the last couple of winters I've even worn my Mammoths when it's snowing and my feet stayed nice and snug:-) I even have a pair of their wellies which go halfway up my calves as I find I can't get into normal ones. In really bad weather I wear a pair of men's walking trainers (Karrimor I think is the brand). I find the men's ones have more width and seem comfier than women's.

    I also get pain in my legs and feet, usually when they're more swollen than normal or when I don't wear my stockings. Unfortunately I also suffer from osteoarthritis in several joints and mainly in my feet. I take painkillers and occasionally they don't help. Due to my OA, I also have to take anti-inflammatories which I know is not advisable with lymphoedema but I'd rather take them and suffer with swelling than the pain of my OA if I didn't.

    I have no idea what causes the pain with lymphoedema. Maybe it's due to the swelling pushing on muscles, nerves, joints and the body not being used to the extra weight that the swelling has put on the body etc? My lymphoedema pain is different to my OA pain but both can be distressing. In the early days I just wanted to shut myself off from the world when I was in pain but nowadays I don't feel like that so much, possibly as I've got used to it. Maybe once you are fitted into suitable stockings, you may find your pain will be more manageable, if not disappear altogether. Everyone is different when it comes to lymphoedema. Some don't experience pain, some have it all the time and some just now and again.

  • Hello jinger :)

    Your story sounds like mine

    Kent

  • Thanks for taking the time to answer, Jinger. I might have to look closer at the different crocs. Part of the problem is my job as I am expected to dress to a reasonable standard and adhere to the footwear policy, and crocs and trainers don't. I am hoping that by the time I have had the bandaging and proper stockings fitted things will be better and the pain will be less. I am sort of dreading returning to work as we have underfloor heating which just makes the whole thing so much worse but needs must.

  • I too have it in both legs and suffer from R/A too. Like you lruk I work with a company who have strict uniform rules. I spoke to my manager and RDM and it was agreed I could be an exception to do the rule as long as I could prove my condition so my doctor and clinic confirmed this.....Maybe having a word may help you?

  • Well said! See my answer below.

  • Hello Lruk and welcome. I am also a newbie having been formally diagnosed last month although I have known in my heart that I had lymphoedema for years but I just didn't want to face it. Mine is in both legs and feet and it does hurt occasionally, in my feet and ankles and, oddly, in my thighs. Anyway, to get to the point: I really think that you should speak to your HR department about your employer's dress code. It would be entirely reasonable for you to be excused from the footwear policy - just show them your leg and foot! The complete lack of smart, modern footwear is one of my main reasons for seeking treatment but it just isn't available. If you are a union member ask them to help you. If not, maybe it's time to join!

    By the way, I am a lifelong Conservative voter but there is something about this subject that brings out the socialist in me!

    Good luck and remember to put yourself first.

  • Thanks ladies. I am in a union and that may be where I have to go. I am going in to work today to speak to my boss, who is wonderful but sadly is leaving, though not through her own choice. I have no idea what the new boss will be like but I am guessing she will want to prove herself so may not be as flexible. I am going to ask about a referral to Occupational Health and take it from there. I don't want to rely on the compression stockings taking the pain away in case they don't so I have to work with worst case scenario. I just keep hoping that I can get over all these hurdles and then start to get on with my life, I don't want the lymphoedema to be more of problem than it has to but these daft policies don't help.

  • I was diagnosed last year with Lymohoedemia and had trouble with shoes.....I found Hotter shoes ( they also have an online service) supplies wide fitting and are very helpful on find the right shoes for you. Some of he shoes are not stlylish like Faith shoes but they are comfortable and that is what I want now gone are the times I wore high heels now the heels are low .

    The pain in my legs I find is increased when I have not rested with my legs raised,or have been walking for a while I rub ibrufen gel in when it is really bad two or three times a day to get some relief as I cannot take painkillers.......Good luck

  • also try cosyfeet that is where I get mine from and you are VAT Exempt due to your illness good luck Lruk. Please let me know how you get on

  • Can you give more information on cosyfeet and how you get the exemtion for vat

  • Cosyfeet.com is the website but they also have a catalogue they can send you....there is a part on the order form to fill in for VAT relief it is easy :)

  • Thanks will have a look at the site and see what they have to offer

  • Thank you all so much for your advice and kindness. I am seeing the lymphoedema nurse next week and should have a date for bandaging etc after that. I will keep you up to date, and no doubt have more questions as time passes. Thanks again for all your help.

  • The VAT relief onf the footwear is very simple - particularly if your Lymphoedema is cancer related, but it also depends on the width fitting you need i.e. 8 x eee. if you are at the lower end of the wider scale you would not qualify

    .

  • I also have been diagnosed with Lymphoedema in my legs and have been wearing tights for a good few weeks now... no change as yet still very swollen. I am finding it difficult with shoes, and generally clothes! I work in an art college and so am constantly on my feet and so doesn't help with the swelling. Luckily the dress code is fairly liberal! My legs are even very hot when I get up and stiff struggling alot at the moment!

  • Jansec, thanks for taking the time to answer. Can I ask how you are finding the tights, apart from hot? Apparently I have primary lymphoedema in both legs, which was a bit of a shock. I need a full length stocking for one leg and a half length for the other but tights were mentioned as the full length stockings tend to slip down. I didn't fancy the tights at all, as they are not things I normally wear but after many hours of having to pull the one stocking up - I could be tempted.

  • I was given thigh length stockings to try but found they ended up flapping round my knees within minutes! My nurse advised me to try a type of glue to help keep them up by a company called Medi UK (Tel No 01432 373500). The glue is called "It Stays" and when I got some last year it was just under £11 a bottle (free p+p if I remember). The bottle is about the same size as roll on deodorant and has a rollerball applicator in the top. I was told to apply it to my skin just below where the silicon band should go - the glue should not touch the band but the stocking material itself. The first time I tried it, wow my stockings stayed up all day for a change. The only problem was, I hadn't shaved my legs (with an electric razor of course) for a while so it was rather painful when it came to getting my stockings off - big ow!

    The good thing about It Stays is a little goes a long way and can be used instead of 'boob tape' to stop tops slipping and allowing more to be shown than should be on display! I have converted several female friends who are non-lymphies to buy some and they prefer it to tape!

  • Thanks Jinger, I will give them a phone next week. Their website also has an aid for getting stockings off, which I am finding a nightmare, so I will ask about that as well,

  • Hi I wear full length stockings and had trouble with them slipping down my legs especially when my legs got warm.......the nurse at the Lymphoedema clinic gave me the glue that Jinger was talking about but I don't have to pay so ask at your clinic. The only thing is when I am abroad it is a nightmare, legs swell stockings become unbearable and the glue melts with body heat......I know stay at home would solve the problem. Getting the stockings on and off I found Nitrile disposable gloves are useful as they are like surgical gloves , therefore you can use your hands to pull without fear of snagging or ripping the stockings.

  • Thanks Hepsibar, I will ask the nurse when I am back at the clinic, though I haven't had too much stocking droop recently. What I have found is that wearing the one stocking I have reduces the pain in my foot and ankle significantly. I don't have any pain in the less affected leg but I will get the stocking for that at my next clinic visit so I should hopefully be fairly pain free after that.

  • I have lymphoedema for the last 2 years on both arms following a double mastectomy. The last 2 weeks the pain has been agony. I have no redness and good fitting sleeves. Does anyone have any ideas or advice?

  • Hi LRUK - Most people with lymphoedema experience some discomfort but the level of pain you are experiencing is more extreme than most people describe - you do not say what caused your swelling. Most people find that treatment for the swelling eases some of the discomfort but with out knowing the actual cause not able to make any promises on that one.

  • Hi there, the swelling was initially caused by an accident at work when a child's chair I lifted swung back and hit me hard on the shin. The area that the chair hit began to swell instantly and then my whole left leg became swollen. That was in April 2012. I eventually got an LE diagnosis in October 2012, after surgery to remove the initial lump on my shin. Heat exacerbates the swelling and the pain, not helped by underfloor heating at work. I was finally given a diagnosis of fibromyalgia in October 2013 which I think was the cause of the general pain, as opposed to that of the original injury, all along.

  • I have a tremendous amount of pain in my leg and foot as well. Try this very simple remedy as it sometimes helps me. It is pure peppermint oil. Rub a lot of it in. Multiple layers if necessary. Sometimes this is the only thing that works. Another thing that helps at times is lidocaine patches. Hope this helps. Good luck

  • Thank you, I will give the peppermint oil a try. I know lidocaine patches work but my gp won't prescribe them for anything except shingles. I have used them previously for neck pain but can't get them any longer 😔

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