Anyone else got swollen legs, ankles ... - Fibromyalgia Acti...

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Anyone else got swollen legs, ankles and legs release water???

Sue15197 profile image
5 Replies

I have extremely swollen legs, with ugly, horrible lumps all over them. raised off the skin anywhere between 2 and 5 inches wide. A support worker told me that the lumps were due to having diabetis for so long and not being treated. The water in my legs and ankles makes it almost impossible for me to wear shoes, I have to wear adjustable sandals that I alter when I go out.

As I am typing this, I have water running down both legs from injuries caused by the swelling, lumps and ulcers on my legs, I have told 3 maybe 4 doctors in the last 3 months, many, many in the last few years also. They told me I have other things wrong with me that are far more important, true, but a little help would be wonderful, as I have had this trouble for going on seven years now.

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Sue15197 profile image
Sue15197
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5 Replies

Hi Sue, yes I have very swollen legs ankles and feet. This has been going on for over a month now and at one point I wasn't able to pass water. At first I was given water tablets but as I couldn't pass water this wasn't a help. I called the out of hrs service as my toes where numb as my feet were so swollen. I was given antibiotics as I had a water infection, I went back the following night as the swelling was getting worse. I was taken into hospital, they didn't know what was causing the swelling so was sent home to wait to get an appt for a scan. Kidneys and bladder now scanned and normal, my legs are unbearably painful because of the swelling, being diabetic they took me off the water tabs but that made the swelling worse, now I'm back on them still with swollen legs numb toes, and my dr said today its my age because I'm a woman and the heat doesn't help .... Thanks for nothing doc ....... I've never had this before and it began before the heat wave. Sorry can't be more help, the only thing that helps is raising my legs higher than my heart.

LindseyMid profile image
LindseyMid

This isn't Fibro. The symptoms you're describing could be lymphodema - lookit up on the NHS Choices website. Don't let your GP fob you off.

Abbeystead profile image
Abbeystead

I have Lyphodema and my legs are really bad at the moment with lumpy skin, dead feet, especially in the morning,leftleg is very swollen. Was sent to leg clinic who confirmed Lymph and fitted me out with stocking which went up to knee ,Murder trying to get them on and they made pain much worse and practically cut the skin across instep, so I ceased wearing them. Am now on the list to see Macmillan nurses who deal with Lypho but dont know how long it will be. Wear jeans all the time to hide legs. Get fed up people saying "Whats the matter with your legs" and very unfomfortable to sit in one position when you go out. For some reason doctor wont give me water tablets, dont know why. Have a moisturiser cream which is very good,( when I remember to use it}. Its horrible though isn't it?

kraftyk8 profile image
kraftyk8

Hi Sue,

In another life I was a woundcare/leg ulcer specialist, in the West Country and you are in luck as I know that your local Vascular Service provide an excellent Lymphoedema service, should that be diagnosed as Lindsey suggested it might be, as well as dealing with Oedema and Leg Ulcers..

I am so sorry that you are having to deal with this, I know from past patient's experiences, how painful, uncomfortable and embarrassing this can be and how much it can limit your lifestyle.

I can only give you limited advice because can't actually see what state your legs are in and I don't work in that field any longer, so what I say is based entirely on your description.

The fact that you are diabetic sends loud alarm bells off to me, as it sounds like the oedema is quite severe. if it is breaking down into ulcers, that can lead to infection, which you will know from your Diabetic Clinic and Chiropodist, has to be taken very seriously.

I think you need to speak to your practice manager as soon as possible and explain in the nicest possible way, that you have concerns about possible negligence in the GP's lack of action over the condition of your legs, because you are a diabetic and risks through infection do not appear to have been considered. That should get them hopping!

If possible print off the document from the first link, read it, highlight the bits that you think are relevant and take it with you. They won't be expecting you to have it!

The bit about Diabetic foot Ulcers doesn't apply because even if you do have any ulcers on your foot, the Diabetic Clinic is not the appropriate place for Leg Ulcer treatment.

I know, from my working experience that most GP's don't have the first didgeridoo when it comes to the treatment of leg ulcers, The District Nurses on the other hand, are experts at their care, because they do so every single day. There are there between 70,000–190,000 individuals in the UK with at least one leg ulcer at any time.

What you need first is a referral to a District Nurse at your practice that can carry out a Doppler Assessment and if it the result is an ABPI 0.65 mm Hg or below, you should, according to the first link below that covers the area where you live, be referred to a Vascular Consultant. If you don't need to see a Consultant you will still need a referral to a Leg Ulcer Clinic.

If the ulcers are the venous type, I will also fore-warn you that the treatment isn't a bed of roses, at the simplest you will need to wear made to measure compression stockings, at worst until the ulcers are healed and the leaking has stopped, you will probably need dressings and compression bandages. Please, don't let that stop you though, because it really is worth sticking with it to get your life back.

Sometimes, a simple way to check whether the ulcers are venous or arterial, is whether they are more painful when your legs are up, in bed at night. If they are, the ulcers are more likely to be arterial.

Also, as you have high blood pressure, you may already be taking diuretics, if you aren't, you might want to discuss that with your GP, taking in to account your CKD.

plymouthpct.nhs.uk/services...

This second link is to your local Vascular Service

plymouthpct.nhs.uk/services...

I'm sorry my answer is so long, but I hope it helps a bit, chin up.

lots of happy hugs, kate :)

Sue15197 profile image
Sue15197

Thanks Kate, your answer is brilliant for me. These ulcers are driving me nuts, and as Abbeystead said, I do not wear anything but trousers. One ulcer is over 6 years age and I have not had any treatment at all for it. I can sit here sometimes with two tea towels wrapped around my legs, collecting the water, having to change them every 2 to 3 hours. I am so embarrassed I will not go out.

Besides the RA, oesteo, fibro and myriad of other health probs, ALL caused by my lack of an immune system, I can get so down sometimes. I am restricted to my home and only leave it when others take me out, that has gone on now for 15 years this year, just stuck indoors. Thankfully I have a good sense of humour and try to laugh off things. xx

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