Today, I have just read an article that stipulates that Covid-19 is just one of many Covid virus strains and that a worse one is on the way. This is the worst news we could possibly hear, because if this worst strain starts to gain momentum throughout Europe it could be years before lock down is lifted. I don't even know if it is going to be safe going back into work and this is despite the fact that working from home is doing my head in and having a serious knock on affect on my health.
My lymphoedema has been at its worst and the compression socks I have are agonising to wear after 4 to 5 hours of sitting at my desk and working at a pc. The first feeling to set in the first two hours of wearing compression is pins and needles in my toes, then cramps hit my toes as they have restricted movement. The next is the severe tightening in my ankles and the first of the ridges starting to dig in and cause me horrendous pain. 11/10 for pain. But I tell myself I am supposed to get used to them so better keep them on. After 3 hours I get horrendous throbbing and pain in my calf muscles and despite getting up to walk around every hour for five minutes, it is still not helping. Then I get the feeling that my upper right calf wants to go into a cramp and my lower left calf is in a cramp from which there is no relief. After 4 hours pins and needles and pain has set in around my knees and I feel that I can barely walk for the pain. They are very difficult to get off and the effort gives me an asthma spasm, so much so that I feel I'd like to cut them off before I pass out with the pain. Then comes the relief, Thank Christ, I've managed to get them off, by standing on a bit of the sock and trying to pull my foot out, apply the same technique to other leg and to finally ease my pains, lie down on my bed at around 2:30 in the afternoon for 15-20 minutes to allow the circulation back into my legs and feet.
It is far better for me to suffer the dull ache of my legs and feet as they fill up with fluid than the horrendous agony caused by the compression socks, evidence of which is still there some 2 hours later with the extra red ridges that I did not have before.
The thing is when standing in front of my classroom teaching, my lymphoedema was hardly any bother, I certainly didn't have agonizing pain with it so long as I was teaching and standing, just a dull ache and the swelling by the end of the day which throughout my day would be building up to that. Leaving my skin expanded, shiny and hard and with slight pins and needles. Sitting for long periods is bad for me, as I can't work with pc on my lap just to keep my feet raised so instead sit at my desk.
In actual fact I always feel a bit better after exercise with my feet and legs. So I thought I'd share them with you now. Sharing these exercises I feel is the one positive thing I can do to help others, if I can.
1) Stand in a doorway and with your arms upright and holding on to the sides of the doorway, rise up and down on to your toes 6 - 8 times and each time hold yourself upright for a count of 4 then lower. You can use the back of a kitchen chair for most of these exercises if that feels better for you.
2) Still holding on to the doorway sides, turn your left foot foot four times anti clockwise in a circle from your ankle and then clockwise four times, repeat the exercise for your right ankle
3) Still holding on to the doorway, bend both knees together a short distance and hold for four before raising yourself upwards, try this 6-8 times
4)Still holding the sides of the doorway raise your left foot from the knee joint and circle this 4 times anti-clockwise and then 4 times clockwise, repeat the exercise for the right knee.
5) Still holding onto the doorway sway your hips side to side, as if your mid region was a pendulum. Try this for 1 minute and a further minute to include swaying your legs in the movement to loosen up your torso and legs from the sides,
6) Let go of the doorway and continue to sway your hips side to side but this time allow your shoulders and arms to sway with you try this for two minutes..
7) Then loosen your shoulders from your shoulder joint 6- 8 times turning them anti-clockwise and then clockwise. Repeat this for your elbows and wrists.
8) Then very slowly rotate your head from the neck to loosen up your neck and shoulders 3-4 times first anti-clockwise and then clockwise. Remember to breathe with this one as you don't want to be fainting.
9) Then imagine you have a string running through your body and give yourself several short stretches upwards using your arms in a weighted but downward position. This is very good if you try slowly breathing in and out as you do it. Now if you feel comfortable raising your arms repeat the stretches with your arms in front of you and then to the sides and lastly above your head.
10) Stretch each limb in front of you and behind you one after the other and conclude by marching on the spot for a full minute.
11) if you have time before marching on the spot you could take your arms and hands finger walking up the closed door to open up a stretch in your armpit first the left and then the right, and you could if you had the time open up a stretch behind your knee by flexing your legs slowly backwards and stretching whilst standing at the kitchen sink. In both these exercises you are supported so should not fall.
This little lot makes me feel human again and lovely and warm all over. How effective over time this will be I have no idea, all I know is that it makes me feel like my arms and legs are in working order and far better than compression. If it was safe to go out into the yard, I would set up my re-bounder to do my walking and marching exercises on.
I am just not all that convinced that with Covid going around that outside is safe.
Have you got anything you would like to share?
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DeadfootMo
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Some of my teacher clients tell very similar stories.
The only additional advice I can give is don’t sit longer than 20 minutes (might not be possible if you are doing FaceTime tutorials!). Use a kitchen timer or set 20 minutes in your phone, and when the alarm goes off - get away from your desk - do 4-5 minutes of your excellent stretching and/or marching on the spot routine, have a slug of water, then go back to the sedentary work - again, setting the alarm for 20 minutes, and repeat - throughout the day. Do your full routine at least once a day - twice, if you are really keen 😉
Coronavirus has been around for a while - Covid19 is one of the variants. It is a worrying time. We all need to listen to the science, rather than misinformation being given out by certain sources.
Keep washing hands and surfaces. Keep our distance. Stay safe.
Thank you Lynora, I can understand that teachers will have similar experiences as mine, because we have now become 100% sedentry by working from home, whereas before lock down the job was possibly 70 / 30. 70% in front of your class and 30& marking, planning and admin etc.
I do my full routine at the end of my day, but throughout my day I also do bits say every 30 minutes I now take 5 minutes and every 2 hours I am having a full 15 minutes away from my desk. I start my day at 08:40 so that I can have my first proper tea break at 10:55-11:10 and lunch on my feet is around 2 pm. rather than sitting down. My afternoon tea break is around 15:50-16:05 and sometimes my day ends at around 17:45, However, at least twice a week I have a very long day which is verging on 12 hours. What is soul destroying is that all of it is online.
I do know that my team are a bit worried because we work with young adults 16 +in a college setting so these young people are almost adults. None of us have a clue whether there is nay intention of mass testing re the virus or even what good it might do. I do know I would not want to be coordinating a return to work as in a college setting social distancing could be a big challenge. So we have to happy working from home as that is the safest place to be for the present, despite the knock on effects on other areas of health.
Thanks for this inspirational post about the value of exercise for lymphoedema. The other thing is that it sounds like your compression socks are too small for you, as they are causing you such problems. I know we aren't supposed to be going out, but could you get a phone or online conversation with your lymph specialist or even GP?
I will ring my GP tomorrow morning as they are going to run a telephone surgery, not sure how this will work, but it is certainly worth a try. My lymphoedema clinic is closed so it will have to be my GP.
My lymphoedema is under better control and I'm much more comfortable since I changed from an OTC circular knit stocking to a custom fit flat knit stocking. It took a bit of trial and error to get a really good fit but the effort was well worth it.
Are you able to elevate your leg while working at your desk?
Hello I have something made by Medeven and I have two strengths 1 and 2. 2 pairs I can't remember for the life of me which one is supposed to have slightly lighten tension than the other. The pair I was wearing the other day that gave me all the discomfort, agony and those extra red ridges were marked with a 2 on the inside. Thing is I don't think compression is for everyone. It might be ok if your legs are a uniform shape, but mine aren't. I do have very big thighs, knees and calves on both legs.
However, I had an accident on the 13th of January this year, when I fell on black ice a few doors away from my front door as I was on my way to the bus stop for work and dislocated my left elbow. At the same time as my left elbow being injured my right leg had twisted itself to the side in my fall. I did mention this at the time as I suddenly felt a massive sensation loss from the right knee to my calf. That sensation loss is with me 24/7. That sensation loss I had thought would ease as I was recovering, but this is not so, as I still have in addition to this loss of sensation is the changing shape of that leg. A muscle or nerve is trapped on the inside of my calf as it feels rock hard 24/7, it is also painful if I put pressure on it. All of which is a result of the accident. I believe that I should probably have been measured again for compression if that is the only treatment available.
Furthermore, as the injury to my elbow was significant, the hospital and my physio were concentrating on getting as much movement as possible back into my left arm, so I have a whole series of exercises for my arm too, exercises that I must do and keep up otherwise my elbow will freeze up as well as my left shoulder. My arm, I am pleased to say has improved drastically but the process of recovery is still taking place, as I do not have a 180 degree stretch on it and I struggle to maintain my elbow and hand above shoulder height. Again my biceps muscle is trapped and this means that my trapezius muscle is still weak.
I know I have two muscles that could do with releasing one in my left arm and one in the calf of my right leg. How I am going to get there fills me with dread, in fact if anyone had to give me any needles in those two places I would probably have to be knocked out as I couldn't tolerate the pain. But steroid injections or surgery are two other routes apparently to improving the situation. How this might impact on my lympoedema is also another issue and I am terrified of the lot. This is why I am a bit obsessive about exercise, as it is the only thing that does seem to make me feel a bit better and looser even if this is just for a short time.
Regarding working standing up, that sounds great I will have a look at ways to do that.
First, it sounds like your compression is too tight. Perhaps a trip to a lymphedema therapist would help get everything moving again and your limbs to come down a bit so the compression isn't so uncomfortable.
Exercise is key and very important; but what about lymphatic massage? Up the time you're doing the massage so the fluid is moving. I know when I take my compression off at night I also have terrible pain in my feet--so much so I'd like to cut them off some nights. A wonderful woman on this board who had the same thing told me to get some CDC oil and do a massage in my feet and ankles after I talk the wraps off and that has really helped. Just rubbing and messaging them every day has really helped get the lymph fluid moving up my legs better.
You don't have to sit at a desk. You can stand and work. Sounds like for you that would be the best bet. They sell standing desks, but you can make your own with boxes or tubs. I have quite a few friends who work standing up and they say once you get used to it, it's wonderful and really helps their leg and back pain.
Good luck dear. Don't give up or give in. Yes, these are very tough times; and yes you have lymphedema and it really sucks. But you're stronger than you are giving yourself credit for. Try to go outside and walk every day. Fresh air, birds singing, smell spring in the air. These things have healing properties that will lift your spirit and reconnect you with Mother Earth.
I think you could be right about massage and I also know that when I give my legs a fairly moderately hard rub they do feel that little bit better after about 20 minutes per lower leg. I'm not convinced its moving fluid about as I can't see any changing shape, I just think it makes the muscles and ligaments feel a bit less painful.
I will have to look into self standing desks or a means to work standing up for some parts of my days.
Just a thought, if you find sitting a problem have you thought about getting a standing desk? It’s an adjustable platform that sits on your desk and can be raised and lowered so that you can either sit or stand while working at the desk. I have one and have found it really useful.
Bless you Mo, you have worn me out just reading that all good to go if you have the stamina. Afraid I would of fallen into a heap after the first couple of things, you certainly have some stamina from somewhere.
Do agree with the other ladies though are your compressions too tight as they shouldn't be leaving nasty ole redness on those legs.
You have a heart of gold please don't make your poor legs, and yourself poorly. xxxxxx
You can go out into the 'yard'. Heck, you can even go on a walk if you don't get too close to people. Exercise is hugely important for lymphedema patients. The virus isn't going to get you if you go outside and don't touch anything or come into contact with people. Then wash your hands when you return home.
You should try elevating your computer with the use of a lift -- Amazon has a relatively inexpensive one. It made a great difference for me (I have lymphedema in both lower legs) by switching several times during the hours spent at the computer. I hope it works for you.
No need to apologize, you will find everyone on these boards is friendly and very helpful and that is what we need when we all suffer from the same issues, or maybe some of us are looking after people with the issues that we have, I do know that when my clinic was open at ST Oswalds I did notice that some people were in a far worse state than me, and what was really sad about all of this, is that most of the patients were so much younger than I. Not saying that we have these problems due to age, but for a good 52 years of my life, I didn't have lymphoedema. In fact how the condition arrived I tend to link to the fact that every-time, I did any long distance travelling my feet would swell like puddings, and then if they weren't rested properly after say 6 hours, they'd continue to feel very uncomfortable to the point where my knees would go numb and the remaining part of my lower leg would swell and have pins and needles. If it was long distance travelling it didn't matter whether it was summer or winter. Around the age of 54, I found that my feet would swell in the summer whilst at work and some days were worse than others. They were the ones where I sat doing all my planning etc. However, at the age of 56, I was diagnosed as having Vienous lymphoedema.
In the process of waiting for a diagnosis over god knows how many years, the majority of my doctors kept telling me, you are overweight, join Weight Watchers, join a gym and get your self on a mediteranean diet to lose weight, buy Jamie Oliver's 15 minute dinner recipes and eat healthy. It was a combination of seeing the nutritionalist and another GP a visiting locum, that I was referred to a specialist clinic at ST Oswalds as both of them felt that although being overweight didn't help me in the least, there was a medical issue that needed checking over.
During my check up, my legs were physically measured at various points and I had to stand in front of a machine, which was apparently detecting and scanning how much lymph fluid was in my legs and feet. On a second visit I was asked to see another specialist who spoke about the wonders of compression. They showed me how to put on a pair of compression socks which were the ones they used as a sample, they felt cosy but not tight at all. But then they said this wouldn't be the right strength for me as I needed something stronger to force the fluid away from gathering in my feet and knees. But as I could get the sample ones on and off, without too much effort they thought I'd be ok with my own when they arrived. And there lies the crux of it all. I on 29/31 occasions when I have chosen to try and wear the compression socks I have not been alright.
It is because I have not been alright in compression I don't think that it is the answer for everyone with lymphoedema. It is such a pity that when you work you can't have your feet up for 15 minutes of every hour as I sure that my feet would be fine then. Anyway Fingers crossed that something good happens for my feet and legs this year, I am certainly doing a lot of exercise which does make me feel a bit better.
I’ve heard that a worse strain than Covid-19 is ‘on the way’, already here & being ‘covered up’ by authorities in China. (This came, not from the newspapers, but another ‘more reliable’ source within the family, which I’m afraid I cannot divulge because of their security status & job!)
Maybe that’s why UK have introduced 14 day quarantine for certain flights into country?
Battern down the hatches, stay indoors, stay safe 😘
On the lymphoedema side, do you have a footstool you can straighten & elevate your legs on? That might help as my legs give me hell if I have to sit on a bus/train with them bent - no chance of that atm; will be wearing full NBC suit & gas mask before I will use public transportation (NBC = Nuclear, Biological & Chemical, it’s a military protective suit).
Do you have a laptop you could use instead? Could lay on settee, or put legs up (put it on a large tray to allow air circulation to keep it from overheating.
Btw - you are supposed to take a rest every hour when working on a computer - use your break to walk around & stretch your legs.
I do have a footstool which I load up with cushions but it feels very uncomfortable, I certainly couldn't work in this position for any major length of time, as I have tried. I do take breaks though otherwise I would seize up and I do quite a lot of exercises indoors, but i have been getting itchy feet in more ways than one and the need to get out more is growing stronger even if it is just for 30 minutes at a time, outside of say my main shop or bill paying and collecting medications.
Went out on my first Nordic walk today. inhaler in pocket, phone in pocket and house keys in pocket. Fantastic, came back home exhausted but my legs and feet felt fabulous. Certainly good for circulation.
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could i have some advice please
Another fearful newbie
