Does anyone experience their legs burning under the stocking when walking 1st thing in the morning?
Sometimes its so bad if I am out I am almost in tears and physically have to find somewhere to stop and whip my stocking off and the only way to stop it is to keep scratching and rubbing both my legs..
The only time I have felt anything like that is when I've had cellulitis and was getting out of bed. Then fluid would rush into my leg and it hurt like hell for a couple of minutes. Worth discussing with your nurse or doctor.
I mentioned it to the Nurse Practitioner at the GP and she said it was due to fluid moving through the tissues as my circulation increases. She also said it could be weather dependant as it happens when its chilly outside. What I dont understand is why the pain is so bad. I have not mentioned it to the lymph team but will have to.
Thank you for answering. The cellulitis element concerns me tho.
My legs are more painful first thing in the morning - you might describe it as a burning sensation or intense ache. This happens when I get out of bed and go to the shower. I figure that since my legs have been horizontal all night, getting upright and walking means the fluid is having to be 'pumped' up my legs through defective tubes and it's the tubes being 'forced open' that causes the sensation.
I've had no real support from the NHS for over 15 years regarding lymphoedema - just sign a prescription for stockings - so I just try and rationalise things for myself. I wouldn't jump to conclusions about cellulitis. I had it once and literally collapsed on a railway platform, almost passed out.
I think you'd have other symptoms but get it checked.
I have been a sufferer for 50yrs and now I am actually getting treatment from local Lymphodema Clinic in Nailsea/Bristol.
I have the same problem but using Cira-Aid with Velcro Strapping helps a great deal but at time my legs and ankles go numb and tingle.
I think it is the blood and fluid being pumped around the legs after being in the same position for too long.
Help from NHS is limited but Lymphoedema Clinic a great help I will be trying the tape inthe next few months so will let you know how I get on. everything is trial and error and what works for one person may not be suitable for another but never give up hope.
I also wear NHS hand made Orthotics Boots for support which help the ankles but are very heavy on the feet.
Thank you for your reply. Its real hard to describe. It never happens when I am in the house. Its when I am outside and I start to walk. And its like intense itching that burns under my skin. It feels like fluid trickling. Irritating. So what you say makes sense. It the fact I am physically crying as I walk that troubles me that the only relief is to rip my stockings off and I literally have to rub my legs for 5-10 minutes to make it stop.
May I ask... How comes you have had no support in 15 years, that must be challenging
I saw 3 different GP's at the practice before a 4th agreed my swollen feet (1.5 shoe size difference left to right feet) and legs needed further investigation.
Prof at Dundee hospital new at once and got me started on stockings. GP said I needed physio but NHs physio available was 15 min sessions weekly - so went private and discovered I was being treated by the same physio that worked part time aat the local hospital. The hospital had suggested using a Flotron boot but had the inflatable boot without a power pack. if I could find a power pack they would ssupply the boot.
End result I bought a Flotron boot and still use it.
One physio was into aromatherapy and found a blend of oils that help with the massage - again privately. Some scoff at the aromatherapy but I know when she changed the oil blend the result was a lot less satisfactory and when the old blend was restored - great relief.
NHS Scotland didn't then and , in my area, now North East Scotland, still don't seem to have any lymphoedema assistance. I just got on a helped myself as best I could.
I reckon the situation is similar in many areas and doubt GPs have much if any training in it.
I still use the boot twice a week and have found a supplier of aromatherapy oils who after research got the blend right so I rub my legs with that as manual drainage. I have tea tree oil as well in case I get cuts etc. I walk as much as possible - that helps.
In a nutshell I found the NHS couldnt cure the problem and couldnt provide much support so I just got on with it myself. Have to be careful with skincare and such like but dont let lymphoedema mess your life up - you can deal with it yourself if you have to. Not the end of the world just a nuisance or pain in the ' legs'.
How do I follow this; thanks for your openness. I agree the service is just so patchy and GPs know nothing!! My GP just threw Frusemide at me for years...
I will take note of your advice. I try not to let my Lymphoedema mess my life up but it does. When I put on my cossie next week I will be very self aware that I dont have ankles or legs like every other woman on the beach.
Suppose thats what makes me unique right...
Dreading it now its getting closer...
Thanks for replying
Get your cossie on if thats what you want and rats to the other people.
I used to work as a gardener and wore shorts - nobody said a thing.
A bit different for me I guess being a man and an oap now but get out there and have a good holiday.
Thanks for your words of encouragement Pete
I often experience this but no-one has been able to say why!! But my legs feel itchy and sore throughout the day. I raise them in the afternoons but find that when I lower them again my legs and feet hurt something rotten. I've also had cellulitis 4 times in 5 years. It's extremely unpleasant and I was told by the hospital that if I was in hospital once each year they wouldn't be surprised. However, I've been able to manage it at home with antibiotics!!!!!
Hi Sue - sounds very familiar. With working full time I cant put my feet up and when I am home I dont tend to. Only chance is when I go to bed at nite.. Doesnt help does it..
Must be awful to have cellulitis so many times too. Thanks for your reply
No Shaz....it's a pain in the bum but what else can we do?? Hope yours isn't too bad, but I bet it gets terrible sometimes!!
Will let you know later - I got the GP at 6.30pm Sue x
Like some others, only when cellulitis is kicking off. I have an understanding GP that allows me a supply of antibiotics to start early if I get symptoms. It keeps me out of hospital. The cellulitis generally causes unusually high stretching of the skin quickly as the infection increases the swelling. Maybe if you don't have the infection then maybe your changes in level of swelling as you first get up is higher than most and you're getting a lot of change in the skin stretching. I wear a knackered old stocking overnight so there's no real risk but it tends to bring the swelling right down. the increase over the day is then gradual rather than an early morning rush. Something to try maybe?
An old stocking at night is worth a try thank you.
I have not had cellulitus before but phlebitis - many years ago (is that the same thing?)
Glad you have an understanding GP - always a bonus.
Is it ok to wear compression stockings overnight? I was told not to, but I sometimes think my legs would go right down if I could!!
Sue I was told the same by my team. On the odd occassion I do keep them on but its not a habit. Maybe Foz can jump in here.
I was told not to as well. as fantastic as the doctors can be and as brilliant as my Lymphoedema nurses are, they don't live with this and it's us as the sufferers that can adapt and find ways to help ourselves. I use older stockings for swimming in...they don't last long and I modify some newr ones by cutting the foot bit off to allow me to grip the floor at karate. I also use stockings that have lost a lot of their tightness as overnighters. I know if they're too tight pretty quickly as they start to hurt my foot or behind the knee and wake me up. So I've learned when they're just about old enough to use comfortably overnight. It makes a huge difference for me and it means I can live a normal life. my leg is twice the size of the other one but manageable. If i dn't use an overnighter a few times a week, it starts to creep up in size. I guess it's a very educated risk. Nothing is risk free in life and I wouldn't use a new or near new one. My advice is feel your way to what works for you. You may find better ways of managing it for you. The overnighter is my way and works for me but I doubt th edoctors or nurses will ever recommend it due to the DVT risk. I also wear calf length stocking over my full length in normal use but definitely don't put that on at night. Hope it helps.
I also have pain in my left foot and my left knee when I'm wearing my stockings!! Thought it was just me!!!
At night wear Cir-Aid which is Velcro Strapping on each leg this improves the circulation and reduces the swelling so easy to put on and not painful.
Must be prescribed by the Lymph Clinic or Nurse.
At night wear Cir Aid which is strapping using velro tabs very easy to put on and not painful it improves the circulation and reduces the swelling. Until you put the stockings on again but remember to take the stockings off if they hurt or cause bruising.
This is definitley something that you should bring to the attention of your lymphoedema practitioner as soon as possible as it might mean that your compression is interfering with the circulation which is not a good thing. If they are happy with your level of compression, the stockings fit and your circulation then you should go back to your GP and ask for further advice as there are other conditions - not lymphoedema connected- that can cause these kinds of symptoms.
Thank you I am going later after another horrendous episode this morning.
Im experimenting with knee hi stockings which have a 48% cotton content. I do a lot of walking & often experience discomfort & rash at start of exercise particulary when its warm and through interaction of hike sock & stockings. If i am senstive to the polymers this perhaps reduce the sensation, eliminate or at least reduce the bright red rash, which can be an alarming sight to those unfamiliar with lymphodema. They are certainly easier to get on which is a bonus, im often the last to arrive due to the battle with the socks!
I do like the stockings. Couldnt cope with the full length ones at all. Way too hot for me. Its great that you get out on those hikes thou, fantastic.
I was able to get threw to my Lymph Nurse today at Walsall Palliative Care. I am going to the doctor at 6.30pm today. Been having continued problems all day and this morning my shins felt hot when they were burning but not now.
She thinks there is an underlying infection poss cellulitis but a review by the GP is needed first. She recommended a full antiotic course - my GP does not know much abt the condition so will see. One thing she did say was to call back tomorrow if I have any problems.
Will update later.
Right - well my GP said its due to my soft tissue getting engorged due to exertion....
So does that mean I should sit around all day cause I dont have that luxury. He said its the pressure of the engorgement on my nerves resulting in psin so he prescribed Gabapentin 100mg 1-2 tablets at night and a separate script for Flucloxicillin however he said he doubted it was an infection. But he said the Lymph Nurses are the experts so I must be guided by them...
Will try the meds - hopefully it works.
Thanks for putting up with my rambling; it seriously has been driving me crazy. Think am gona ring the team back tomorrow.
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I cannot wear compression stockings because I can't bend to put them on. My husband helps me put large unelasticated socks on. I get the men's pairs because the women's are too tight. You can look up on the net - I used Amazon, but of course I am not recommending, but there are lots of different socks around. I have to buy special shoes from a shop near Harrow. You can find stockists for the UK if you search under wide fit shoes.
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