well after weeks if not months of having anti biotics steroid cream and given other diagnosis after diagnosis when my doctor talked about lymphoedema it all fell into place and made sense.
my question is how do you all cope with the pain? I have a good pain threshold usually but if something or someone knocks my leg it’s like a hot knife going though my skin and staying there 😟
where is the lymphoedema? It shouldn’t be painful.
Hiya in my right lower leg, I also have varicose veins in the same area 😟 I’ve taken pain killers but it’s not touching it …..
Oh dear I'm sorry to hear that. I don't have this experience but based on one of your other replies, you should definitely go back to your GP and ask about compression garments to keep the swelling down. OR at the very least ask to be referred to a lymphoedema specialist as GPs knowledge on it isn't usually great...
have you been given compression stockings? Sometimes these are given for varicose veins as well as lymphedema. When I get aching pain in my legs it tends to be from walking a lot or standing awkwardly, which isn’t necessarily down to having lymphodema.
I assume your leg swells and if you press on it, it leaves ‘dents’ where you’ve pressed?
No indentations of any great significance, and doctor said no to compression stockings - I was given a two week course of anti biotics and ‘water tablets’ but all to no avail. The leg is …swollen …painful and a weird shape with redness and the hot knife sensation all in the lower part. I think I might go back to doctor and ask for second opinion
This sounds like cellucitis.
definately go back to GP and keep going back until you have the answer as to why it’s happening. Hope it’s not too long before you have an answer.
Hi, I am so sorry you are having such a difficult time. As others have said lymphoedema does not usually cause the kind of pain you are experiencing, more an ache. It maybe that the varicose veins are the issue. Your GP may not be recommending compression because they feel the lymphoedema is related to a problem with your circulation but please encourage them to refer you to either a lymphoedema clinic or the vascular team as the condition does need to be managed. There is also a lot of good information on our website lymphoedema.org. You may also want to consider subscribing to the LSN so you can keep up to date on how best to manage your symptoms - it is just £20 a year and you can pay online via our website.
The majority of the time the pain I get is a dull deep ache (which can get very intense at times), unfortunately if it’s flaring and I’m jostled (it’s in my arm, breast n upper back) then it feels like I’m being jabbed with a red hot ice pick. I’ve learned how to avoid most of the jostling, though it still happens and it hurts! If it’s more frequent/pain is lasting longer, then there’s something else going on and you need to be seen by a specialist in lymphodema (either a clinic or a specialist trained for more than a couple of hours which is what GPs generally get (if you’re lucky). Water Tablets are of no use, as the build up of lymph is not the same as excess water retention. Also, it’s far easier to contract cellulitis (which I’ve never had, though I believe it’s very painful and can lead to sepsis), hence you need to discuss your situation asap with someone knowledgeable (not your GP) in how to best maintain yourself, as there’s no cure or medication for this, it’s about lifestyle changes, compression, MLD (manual lymphatic drainage (massage)), etc. Don’t let your GP fob you off, they have diagnosed you (which is good), now they need to forward you to the specialist
Are you sure that you have lymphoedema? This level of pain you are describing sounds more like cellucitis, which is an infection in the dermis, it can also get you to the bone. So if pain killers aren't touching it, ask your GP for a hospital referral to examine if you have been bitten, maybe cut your skin anywhere. The department for tropical diseases will take a look and examine the situation properly. If they feel you have a chance of it being cellucitis they will give you intrinsic antibiotics via a cannular into your skin so that the blood circulates and takes the antibiotic to the area that is troubling you. They will do this for about a week, so you have to attend the dapartment at a certain time every day or they arrange a district nursing team to administer the intravenepius antibiotics at your home, before placing you on oral antibiotics for approximately a week to a fortnight.
The cellucitis usually starts to clear up at this point leaving you with minimal pain or none at all. However, you skin may look discoloured and this can last for some time. This condition is excrutiatingly painful if left untreated and can lead to sepsis. It does affect lympoedema sufferers too who have varicose veins, so it would pay to get yourself checked out for a second opinion on your pain.
Thank you everyone who has responded I spoke to my doctor again and she is referring me to a dermatologist who can either confirm lymphatic problems or not. I’ve four antibiotics left and it’s exactly the sand as it was when I started them no change!!
Will update soon
get yourself referred to a good lymphoedema clinic.
The one at St George’s Tooting London is where my son goes.
If you are not in their catchment area you will need a local hospital consultant referral, I pushed for my sons after him not getting the correct treatment at my local hospital.
Also Contact the LSN (lymphoedema Support Network) and get them to send you some information.
In the short term get your GP to write a prescription for compression stockings for your legs so they do not swell too much, it is the swelling g that makes them more tender.
And finally make sure you do not have cellulitis, if you do you need to be on long term antibiotics to prevent recurrence, 7 days supply is insufficient. My son has been on 1g antibiotics daily for many years (10+) because cellulitis leads to lymphoedema.
Thank you for advice my doctor has referred me to a lymphoedema clinic so waiting for their response.
between now and your appointment give the LSN a call and have a chat.
Very knowledgeable people there will help you find the best hospital local to you with a good service.
In my local hospital the only lymphoedema support is given to those post cancer surgery, after lymph nodes removed.
As my sons is primary lymphoedema he did not qualify for that service as it is delivered by Macmillan nurses and not the hospital trust.
Firstly you need a diagnosis. From all you have said I would be open minded to the diagnosis of lymphoedema for you. It may be but also might not be. If it is you need appropriate support and treatment. However if it is NOT lymphoedema then the treatment for it in your case is a waste of time and effort. I know of several patients told they have lymphoedema based on a clinical diagnosis, when in fact something else is causing their symptoms and should be treated differently. Once someone gives you a diagnosis of lymphoedema you have it for life so I suggest making absolutely sure the diagnosis is correct. The best way to do this IMO is ICG lymphography or lymphoscintigraphy. Most UK NHS lymphoedema clinics do not have this available so it is important you see a specialist who can order either of these tests to make formal diagnosis. These scans can be accessed via the NHS or Privately but not it many places. The worst result is been given a diagnosis of lymphoedema by your GP (and having compression which has no benefit for the rest of your life) and missing the real diagnosis, which is then not properly investigated and treated. Good luck
yes I totally agree with you and my GP is trying to refer me to such clinic but most only give you the test/scan if you have had cancer and lymph’s removed. She hasn’t given me. Impression stockings as yet because I can’t even bear the bed sheets on my leg let alone a compression stocking.
I think I may ask for an ultrasound on my leg as it’s bulging in three different places 😞
Newly diagnosed
Still not diagnosed
just have questions
I have just had LVA at Oxford
Is the pain I have a 'normal' part of lymphoedema?
