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Lymphoedema and nerve pain

How do you stop the crushing feeling in your legs apart from elevating to reduce the swelling?

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I’ve just read back through some of you older posts. If you are taking Atorvastatin, you might need to have a chat with your GP. One of the (many) side effects of this stuff is neuropathy (nerve pain) - and it can also increase oedema. It may be worth a ‘medication review’.

What class of compression do you wear? Do you still use CirCaid?

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Wear circaid wraps daily as problems getting compression stockings on.

I do MLD an hour daily but have some painful pressure points on knee and behind the leg. Also do daily deep breathing exercises.

I use stationery cycle for exercises as no longer able to do cycling exercises on the bed. Walking the wall helps and other exercises when laid on the bed. Too much cycling causes painful knee joint that i have to stop as out of breath. If i have done too much exercises then brusises appear on my legs and thighs.

I get tired and exhausted very quickly so pace myself and rest when need to if I do not rest the swelling and pain gets much worse.

I have reduced salt and carbs from my diet. Eat lots of fruit and veg.

So Miss chocolate and icecream.

I drink 3 pints of water daily any more then i am on the loo every 15mins.

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Every major hospital now has a Pain Clinic. These seem to have a wide remit, and I have found them very helpful for diferent types of pain. So why not ask your GP to refer you - worth a try?

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I have been referred to the pain clinic which helped me alot to understand what to do and to pace myself so not to over do things and how to listen to your body as everyone is different how they respond to therapy.

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Too much of a good thing can actually have adverse affects. If you keep yourself constantly elevated then your legs aren't getting any exercise, no exercise can increase oedema in the same way as some medications can if they are taken for too long. It is a combination of all three that leads to a reduction in swelling and a reduction in pain. You just have to find the balance.

As a teacher I am on my feet for 50% of my working day but I am also in a rush to get from one classroom to another to teach, I am often up and down stairs for a good proportion of the day say 15% for the rest of my working day which is from 8 am - 6 pm on average I am sitting down. When I get home, I am often in pain and absolutely knackered and my feet and knees although exercised well from my day are in desperate need of a rest so cup of tea, a small meal and my feet up is the answer. However, I have noticed that I don't always feel as relaxed as I should and my feet do not necessarily go down, as it is really more a case of total exhaustion as after my small tea, I often fall asleep with my feet raised above my hip line.

Sometimes and I hate days when I can't go to bed without having to do more work, I have a little work to do at the computer before bed so I will find myself sitting to do this for about 90 minutes - 2 hours on say 3 nights a week.

As a teacher I get paid for a 37 hour week but work closer to a 55-60 hour week as the norm.Then I get to bed around 12:30- 1 am and I'm up again by 6 am. So I get 5 hours of sleep. In the morning I find that my feet start by being a bit stiff and painful but this eases within the first hour of being up.

On a Saturday, I simply won't get up until 10:30 am and my feet are then almost down to normal but as my relaxing Saturday progresses on they do start to feel stiff and swollen about mid-day and they stay like this all day. My best day is a Sunday as I will have then had a second decent night of sleep with my feet flat or up as again I refuse to get up before 10:30 am so I will often get at weekends a good 9 hours or even 10 hours of sleep each night from the Friday night till the Sunday morning.

Things ease to around a third of these hours during the holidays as teachers are expected to do a good term of planning and prep during them, so they aren't really holidays. So as you can see I have a mix of rest and activity. I do not take medications for Lymphoedema, but I do have it. I do confess though that sometimes I have to take painkillers.

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I exercise daily i have stationery exercise bike as i find it hard to keep my balance on a normal bike i so wish i could ride a bike i would be out on it everyday. I used to be able to lay on the bed and cycle but that is now impossible. I have problems when standing too long causes me severe back pain and back spasms. I have been to pain clinic and was told to listen to my body and pace myself. So i know what i am doing is right for me. I am trying to cut back on medication as i had a few problems. Told to try and drink more water 8 pints a day i can only manage 3 pints then i need the loo every 20mins. If i drink more 3 pints then its every 10mins. I have very low salt and low carb diet. I have interrupted sleep as need to get up and wee 4 x nightly so do not drink after 9pm.

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I hope you weren’t told 8 PINTS of water a day?!?!?! 8 glasses (about 220mls each glass) is more reasonable! 8 pints is about 4.5ltrs, which, unless you are an elite athlete, would make you ill.

You say you have cut back on salt intake? Too low intake can cause muscle pain, so be careful.

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DR told me to cut out salt cos if you read all food labels there is already alot of salt and sugar added to the food. I did find this helped alot i am very careful of what i eat and what is added to food due to other issues. It is a learning curve. I feel better with less salt, sugar and fat.

Looking at the keto diet as I need to lose 6st. To be at my normal weight.

It seems life can be a hard battle at times especially fighting depression and anxiety.

As Vorltral helps knee pain i am going to try it for ankle pain.

Also trying Mayo Raw Milk to see if it helps.

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Your days seem exactly like mine - I'm also a teacher. School holidays is when I can see huge reductions as I am not on my feet as much. Hopefully we can continue until it is our choice to retire and not forced to retire because of uncontrollable lymphoedema.

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When i exercise too much bruises appear on my legs.

Walking and standing makes the swelling get worse and alot of pain in the soles of my feet and ankles.

I manage to cycle for 2mins and on a good day i can just manage 4mins.

Then i need to rest. I do his twice a day. Hoping to reach 5mins 3 x a day.

When i get pain in my knee i have to stop cycling. It has been like this since 2000 had cartilage removed in 2005 but still got problems and LE got worse.

Trying to avoid getting bloating heavy stomach.

Always read food labels for low Sugar, Fat and Salt.

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I hope you manage to get some proper pain management soon. Just do the bare minimum to keep active and be careful with water.Too much is just going to end up stored in the body adding to the problem and the rest will make you go to the loo more often. If when you go to the loo have you ever had the speed of your wee measured as this can be indicative of other issues regarding how well you shift fluid? I would ask for a check up.

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Had a bad night the feeling of both ankles being strangled whilst in bed trying to sleep. Then woke from a bad dream that i was slowly dieing and my family came to visit me to say goodbye as nothing else could be done.

Now this morning up at 7am breakfast 3 mugs of tea feeling very light headed and problems with brain fog. The weather is cold and very heavy low cloud and hurts my eyes to look out of the window. I have no energy and feel very exhausted.

Is this anything to do with LE nerve pain if not what is it as no help from DRs.

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