Lymphoedema and nerve pain

[alfie19]

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

[Lynora]

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?

[alfie19 in reply to Lynora]

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.

[veriterc]

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?

[alfie19 in reply to veriterc]

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.

[DeadfootMo]

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.

[alfie19 in reply to DeadfootMo]

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.

[Lynora in reply to alfie19]

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.

[alfie19 in reply to Lynora]

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.

[DeadfootMo in reply to alfie19]

Hello Alfie19, An exercise bike is good but if you didn't have this you would need to use your front door step or back door step on dry mornings as a means of exercise, in fine weather a rebounder is excellent. I say excellent because you can walk on it and run lightly on it, you can also jump a short height on it or skip using a rope.The experience gained from using a rebounder is enabling of your entire circulation system and only takes 10 minutes a day. 8 pints of water a day will lead to drowning yourself so don't try it. Instead calculate that all of your food contains a good 1/3rd of the water and fluids you need, cut down on salt and sugar as opposed to fats. Some carbs and starches are very good for you and your internal organs so get this checked out. I say this because carbs can fill you up and reduce the need for snackking between meals, they also help to bulk out your excretia. If you need to wee as much I would check out whether I was diabetic. Good luck and good health. A check up for a second opinion will not do you any harm.

[Beach3 in reply to DeadfootMo]

I have just been diagnosed and am a teacher. I am really worried I won’t be able to do my job so your post has been really helpful to me. Do you have any other advice to share to manage it with our crazy workload and hours? Thanks

[DeadfootMo in reply to Beach3]

I love teaching but over the years the nature of the job has been changing, most of my friends have taken up other jobs now as they say that being an administrator is not what they went into teaching to do. One or two of my friends admit that the thing they miss is interacting with the students but at the same time, they also admit that now because they have spent so many years in less stressful work, that they would find it difficult to go back into a classroom to teach.

Balance is the issue here, balance between work and normal life, balance between work, normal life and fitting in the ways to work on improving our Lymph issues. If for one moment we forget that we have Lymph issues and we make no provision for their improvement, it will come along one day in a far worse state then it is at present and bite us. So we need to plan for some exercise everyday whether we like it or not.

Suitable exercise for us would be a 10 minute Nordic Walk at least 2 to 3 times a week.

10 minutes on a rebounder, a step exerciser or exercise bike everyday when staying close to home.

It would not do us any harm if we went to the swimming pool once a week either and this is whether we can or can not swim. The idea here is that the motion and paddling of water creates a good state of relaxating exercise for our joints. In some pools classes run in how to exercise to water and music at the same time. Also some cities or gyms hold calinetics exercise classes which is also good for those of us with Lymph issues.

It seems to me that if we do some exercise in the week that we should be able to work for longer.

[Beach3 in reply to DeadfootMo]

Thank you for your reply and suggestions

[Health1919]

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.

[Beach3 in reply to Health1919]

I have just been diagnosed and am a teacher. I am really worried I won’t be able to do my job so your post has been really helpful to me. Do you have any other advice to share to manage it with our crazy workload and hours? Thanks

[alfie19]

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.

[DeadfootMo in reply to alfie19]

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.

[alfie19]

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.

[tadds7]

Do you ever get red toes that feel warm? I get this and people say might be nerve related.

[Hidden]

Maybe some here also have small fibre neuropathy (SFN) - often misdiagnosed as Fibromyalgia. I’m new to the idea of Lymphodema - only came here because a vascular medicine dr blamed my resting hands and eyelid swelling on this and it made so much sense to me of why I’m gaining weight despite dieting using the low carb prediabetic diet. I’m soon to be tested for pulmonary hypertension which I believe can also cause Lymphedema.

There is a rare condition called Erythromelagia, the opposite but same vasospastic mechanism as Raynaud’s - which causes hot swelling and reddening. It most often affects the soles and toes but can affect any body part. It’s a response to heat - hot weather, stress, underlying illnesses etc. It causes severe chronic pain and overlaps with SFN and Raynaud’s for some sufferers. I have this combination secondary to rheumatic/ collagen vascular diseases. sruk.co.uk/scleroderma/eryt...