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Do you have Pain in Foot and Legs caused by Lymphoedma

The pain could be the buildup of pressure of fluid I also take strong painkillers but have been told to take them every 4hrs daily.

I also self message my legs in the mornings and at night when not wearing the stockings. There have been times I have had to take them off due to my legs feeling really heavy and the tights feel they are cutting into my skin.

When wearing the compression stockings I exercise my legs and rotate the ankles but still the pain persists and was told it was something I had to live with but must take the painkillers to keep the pain at a bearable level.

When the swelling has reduce after a good nights rest the pain returns when I have been on my feet or have been sat down with my legs dangling for too long so the pain gets worse throughout the day.

So I need to rest and have my legs elevated to relieve the pressure (this is a great relief).

I have learnt over the years Its trial and error so do what is right for you if you find it helps.

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I find I am in pain when I am doing what my body feels is too much. I take it as a warning to try and ease off a bit and rest more, though that isn't always easy or even possible. I totally agree with the trial and error thing and finding what works for each of us as individuals, though I do wish there was more awareness/help available.

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The body seems to tell us when enough is enough, I get times when the pressure causes more discomfort even wearing my compression garments, Like others i take tramadol painkillers and am told when i feel it coming on to sit and elevate them, that may be the answer but not always practical is it, Still thats the option in life.It of course has an impact on your evryday life, but you arent alone with these symptoms.

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TRY WEARING STOCKING OVER NIGHT AS WELL IT MAY HELP REDUCE SWELLING FURTHER

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To wear compression stocking day and night is totally unbearable for me so use the CirAid Strapping at Night and sometimes during the day. I get very tired and feel drained so I need a 2hr sleep every afternoon to re-boost my energy.

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I have now been in severe pain for 2 days.

The pain in my swollen ankle joint is totally unbearable.

I have been taking paracetomal and co-codamol every 4 hours I can't bear any weight on my foot even resting I am in pain which travels up to the knee if I am in the wrong position.

I have been resting with my legs elevated with CirAid strapping as I can not bear wearing the compression stockings at the moment.

My ankle is badly swollen and burns but not red.

At times it is unbearable for me to put my foot to the floor.

The test for Arthritis came back negative so I wonder what is causing the pain.

I rang the GP's but no appointments.

How do I stop this excrucating pain which is a bit like continuous cramp.

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Having Primary Lymphoedema in both ankles and legs for over 50yrs.

I have been told the excrucating pain could be due to:

The swollen veins that help to get rid of the waste in our bodies.

1. It could be Gout but there is no redness and it is not hot to touch.

2. It could be a trapped nerve.

3. It could be the blockage in the lymphatic system.

4. It could be that I am overweight 14st. (but I had the same problem when I weighed 9st.)

5. It could be Arthritis but the blood tests results are clear.

The pain feels like very severe cramp in the ankle which can travel up to the knee.

Putting any pressure on the foot ie: walking is unbearable so is kept to be minimum.

I wear socks or slippers so that I can slide my feet so that I can move around the house.

I have had this problem for over 20yrs some days it is ok but when it flares up I CAN NOT do anything at all as sitting, standing, walking or lying down I am in extreme pain just waiting for the painkillers to work then I can have a sleep.

Seeing Lymphoedema Nurse in January.

Does anyone else have this problem.

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Yes, fortunately I can do some walking, but I recognize the description of the pain. It has generally no correlation to wearing compression stockings either. Sometimes it flairs up with and sometimes without them on. Some mornings I wake up fine but by lunchtime it’s bad and by evening excruciating. Sometimes I wake up and already have that ‘heavy legs with cramp in the calf and Achilles. I’m a primary lymphodema.

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Hi Alfie19,

I also get pain at times on the inside of my left ankle and sometimes the ankle gives way causing me to stumble. Fortunately for me the pain is not too bad to warrant taking pain killers. Although I have suffered from Primary Lymphoedema for some years the stockings are working pretty well (touch wood). I also suffer with RLS (Restless Leg Syndrome) so putting my feet up for a rest can be even more uncomfortable for me!

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Hi

I had something similar happen to me. When I saw my consultant he advised me to raise the end of my bed which I did by about 5 or 6 inches. This really helped and the pain and swelling really did get so much better. Hope this helps!

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Hi I agree with redjulia, I was told to elevate the end of my bed too. I must say I use a spare pillow under the mattress which works well for me although it may not for others.

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My legs are always elevated having a 2 helps as the ankles can rest over the arm. I also have them elevated in bed with a pillow but having restless legs its a nightmare going off to sleep. Using Cir-aid is helping wondering what causes the skin to go hard when legs are swollen..

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Hi sorry you have so much pain,, do you put loads of lotion on you feet/legs, I get some free on prescription Aveeno Lotion, although they don,t like giving it, I am now buying 'Vaseline intensive care, essential healing' its quite a big bottle, an its very soothing an you can massage you feet/legs as you put it on ,i hope you get some relief, I must be lucky as my leg does not hurt, but gets really uncomfortable and aches a lot, good luck

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I too suffer with pains in my feet and horrible pains when I am in bed at night.

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Update: I am now taking Codeine throughout the day and Amitripyline at night to help me get a good nights sleep however I still wake up to visit the loo 3 times in the night. So my sleep is always broken therefore I always have to have an afternoon nap.

Still got very swollen feet and ankles and when my legs swell I get blisters that pop and clear fluid runs down my legs.

It can be very painful for me to walk due to the swelling so I am not able to walk very far.

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For a few years I find it extremely painful to walk as the swelling to my feet and ankles is so bad I could not walk up the garden I had to use a walker for support.

I take Gabapentin for the pain and to help me sleep as the pain is unbearable.

A doctor at a hospital told me years ago I should use a wheelchair when the pressure is too much for me but I feel I am giving in even though I know it would make my life much easier I think time is telling me that is now what I have to do at least then I will not be in pain and I can be able to get around more.

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Thank you for this post as I have exactly the same problem. The pain increases during the day and especially if I stood talking to someone for a few minutes, after walking the dog (I now listen to the ‘don’t take another step, just turn around and go home’ signals, or after having done the groceries.

My lymph drain masseur would acknowledge this was ‘normal’ for lump patients and refused retreat me any longer until ‘any underlying issues’ were looked into. So it’s good to read that this is a ‘normal’ part of lymphodema.

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Hi Alfie.

Once again we share a common symptom, but my extreme pain causes me confusion as to it's source? Having had chronic Sciatica for many years now, caused by a damaged nerve, I'm unsure as to whether the pain is from the Lympho (diagnosed 2 yrs ago), or the Sciatica? My Lympho is no-where as advanced as yours, but I have to wear the flat-knit knee-high's? The pain is horrendous from the time I put my foot to the floor, until it becomes excruciating after 10 mins standing! It feels as if my ankle is trying to dislocate itself - sideways! 😱

I take MST's, Pregabelin, Naproxen and 800mg of Paracetamol a day, topped off with Oramorph if/when necessary, yet I still can't walk any distance at all? I do get very despondent, and wonder if there's any hope for us?

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Hopalong sending you hugs this disease is awful so I fully understand how it affects your daily life I can't walk any distance if I do the pain gets unbearable from pm and night time sleepless nights the only thing that helps me sleep is to have meds if I have over done things the next day I can nearly move so pacing oneself is very important. The excruating pain in my feet and back after standing for 10mins I no longer do as I am so fed up with the pain I use a perching stool at the sink and have a stool in the bathroom as standing causes my ankles more swelling and pain they can not take the pressure and neither can I. I also get fed up of trying to explain to my friends and family about how this disease affects me cos they only see the swelling. They can not understand why I get depressed and tell me to just Accept it. But it is not nice being told you are a burden and they get fed up with me It makes me more depressed when I feel exhausted I have to rest to reduce the swelling and pain life is limited so now I take my mind off the pain and depression by reading, watching tv, and learning to crochet as this can be done whilst resting. I feel I am lucky compared to some but at the same time lonely but talking in this group has helped a great deal as now I feel I am not alone there are others who have the same illness. My cousin aged 55yrs who had secondary lymphoedema in her arm after cancer surgery that had spread had to fight to have MLD treatment 6 months later she died. Her mum died 10yrs later due to cancer and secondary lymphoedema in both legs I was able to give support to each other. We all prayed and asked for help when it got too much for us. We have to find a way to live with this disease a way that is comfortable for us without struggling.

Writing poetry I find helps to pre occupy the mind.

Please try not to get too despondent we have to accept the things we can not change and change the things we can like the way we think whenever I feel down and low and try and fight back and shout to my invisible friend to go away and leave me alone I watch tv or read and relax that is me time we have to look after ourselves I do what I can in moderation it is much less than others can do but I don't care anymore otherwise the depression gets worse.

Take care xx

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