so fed up with all this !

[chazy]

Hi

I have idiopathic secondary lymphedema in both lower legs.

The problem is ongoing infections in my legs mainly ankle area but can extend to my knees. I was doing ok with juso wraps but then developed open weeping sores just were they end at the ankle, I said I thought I might be allergic but was told I doubt it !

Anyway the lymph team suggested dressings and Comfifast bandage instead of liners but then I developed psoriasis which of course would have to be especially bad on and under both feet and all of legs really. I have managed to get it under some control on the rest of my body but nope not the legs.

I have also been told I have stasis dermatitis with warty protrusions and something else with my legs. I am sick to death of docs telling me one thing, nope no wraps at the mo and TVALS telling me we need to get you back in wraps !

My legs are in such a mess as the psoriasis and the other thing I have get infected because they are constantly wet, the psoriasis plaques that can be large and very sore starts dry but then they get wet with or without bandage and wraps. Can’t even have the silver liners as my skin just won’t tolerate any coverings 😔😔

The district nurses are now coming in to dress my legs in soft bandaging not compression as I need my readings doing again before I start compression again. I have no idea what the future holds as everything even comfi fast bandage I seem to react to which causes burning hot red legs that almost immediately cause dimpling and are unbearable then the infection starts again. I think the other condition was something like eczematosis changes or something, in other words my legs are a disaster.

I have very limited mobility now due to other conditions but I had slightly better when my legs were not this blooming heavy and sore and infected and now becoming deformed at the ankles , I am not obese though I could be lighter I guess lol 😂 now thinking of getting a power chair as I can’t just stay in here forever, think I have ventured out a handful of times since shielding but can only do that via a lift by family members and they all, we have a tiny family, work and have busy lives. I don’t really know why I’m writing this apart from I feel trapped and so miserable 😞 thank you for reading my whinge😀

[sleeviejeebies]

I'm so sorry to hear about your situation Chazy. I can't offer any advice, but just sympathy and the hope that things will get better. Hopefully some other forum members will be able to give you some practical advice to help alleviate the skin problems. Hang on in there!

[chazy in reply to sleeviejeebies]

Aww 🥰 thank you for replying sleeviejeebies, really kind of you. It does make a difference when others are understanding and kind. I haven’t slept more than an hour or so all week with these bandages on, I need to be able to put some emollient or fusibet on my legs, I bet the psoriasis is rampant now as they will be extremely dry and itch and burn. Oh well district nurse out again today so I’m going to be having words plus I’m going ring the psoriasis association see if they can help, there help line is fab .

Thanks again, so kind of you, take care xxx

[sleeviejeebies in reply to chazy]

You're welcome, and I hope you get some joy from the district nurse/psoriasis association. Sometimes it helps just to know that there are other people out there with similar problems. You take care too! xxx

[LymphSuppNetwork Partner LSN]

Dear Chazy, I am so sorry you are having such a difficult time. It is so hard when you have two or three things all causing problems, a real chicken and egg situation, or in your case, lymphoedema, lymphorrhoea, wounds, allergies, psoriasis, well you get the picture. I would suggest that you get your community nurses to act as a co-ordinator for all this as often the notes of your conversation with one person are not available to the next so they kind of only worry about their own bit not the whole picture if that makes sense. Make sure that you have a written, or printed off, copy of your care plan that you can have with you to show anyone who you are dealing with and get them to update it with their thoughts, ideas, treatment plans. I know you will know but you are in a vicious circle at the moment - you have lymphoedema which means you are more likely to get infections, you have wounds which leak protein rich fluid onto your already delicate skin causing more deterioration, you have an allergy to the treatment you need, ie. compression and that triggered psoriasis and so the circle goes on. You need someone to step in and decide when and how to break that circle. If you are not under the care of a dermatologist I would suggest this as a next step, you may need allergy testing to see what it is in the compression, or the leakage you are allergic to. I do hope you manage to get some support and relief.

[chazy in reply to LymphSuppNetwork]

Hi and thank you for the very detailed reply, very much appreciated.

I am sat here now and can feel to the touch the heat through all these layers of bandaging coming off my legs, nightmare. I don’t feel well either, my two Daughters, one a nursing sister and one a staff nurse are convinced I have Lupus as I have now developed what looks like the butterfly rash on my face. My kids are very unimpressed by my care and I really feel it won’t be long until they intervene, being professionals in the NHS they are chomping at the bit but also need to remain professional.

I agree with everything you have said, I have witnessed first hand how one department doesn’t communicate with another. Took 3 referrals to get TVALS back on board as they discharged me 18 months ago when all the skin problems started as they looked at screenshots of my legs and refused to do anything until a diagnosis was made. So off to the GP and psoriasis was diagnosed, I was given all the steroid stuff and 2 different emollients for the psoriasis plus comfi fast bandage and kerramax dressing to dress my legs at home. Things just got worse and eventually I had to just leave my legs open to the air and change clothing and bedding constantly. It was only when I rang TVALS several times myself that I was told your GP needs to refer you back to us ! 3 referrals later, they kept getting it wrong! And TVALS phoned me, I have had to do all this myself, chasing everything up all the time. After first referral I waited a month and if I hadn’t had rang TVALS I would never have known the GP’s referral was rejected ! Then the same with the second one.

TVALS are like every other department understaffed and no time, they could not do a home visit at present so decided to get district nurses to assess and dress until they can get out to me. The district nurses are lovely but they don’t know my health background and they couldn’t understand why I had just been prescribed bandages and dressings with no monitoring at all. On and on it goes. The problem is the nurses are putting dry dressings on my legs, then layers of bandage but no blooming emollient !!

I don’t know if it was the wraps that caused the wounds as I had cellulitis, shingles top to bottom on one leg and psoriasis develop all within a few weeks of each other. I’m not even of pension age until later this year and I am so stuck with no life. I can’t expect my kids to push me everywhere bless them, they work so hard and lots of overtime as no staff. I am just feeling a bit down and out but I am hoping this will all get sorted and I know I will be much more bright in myself.

I will ask about a dermi apt, I was told initially when I got late onset psoriasis that it’s around a one year wait but it is what it is these days.

Thank you again, it does help to write how we feel now and again. I will certainly do as you suggest and get a copy of my care plan and also ask what we are going to do going forward.

Take care, sorry for the long post again xxx

[LymphSuppNetwork Partner LSN in reply to chazy]

Please don't apologise. The least we can all do is give each other time to be heard. I hope you understand that we are unable to give individual advice but it is never a good idea not to use something to keep the lymphoedema skin moisturised and protected. Also if you are feeling more unwell or feverish then please do make sure you are not developing cellulitis and get checked out. I think getting your family involved is not a bad shout as they often know how to communicate with colleagues in a way that makes changes happen.

[chazy]

aww thank you so much, a great listening ear is very welcome.

Yes I realise you are not in a position to give out individual advice but I get what you mean re keeping the skin we’ll moisturised, I am fanatical about it plus it’s the same regime with psoriasis. I don’t know if the nurses are trying to get them dry ? It won’t happen though. Well it might do with this thick padding on them but it’s too much, they are too hot, too dry and itch like crazy. I will talk to the one one that comes today but its if they have time to listen, I always say I would kill for my kids but I am shocking with standing up for my own health, is it a mum thing lol 😂 it could just be a patient thing lol. I am going do my own research in a min and look for moisturising dressings if I find any available to the NHS I will enquire. I guess I really need to open my mouth more, it annoys my kids so much that I don’t stand up for myself yet I would every day of the week for them.

I will be back when the nurse has been and update, there could be others out there that are in a very similar situation so talking about it might help others too.

Thank you again, you have really improved my mood today a lot 🤗

[chazy in reply to chazy]

Hi, quick update as I promised I would.

The nurse today was older and has been doing the job a long time, very efficient. She totally understood about the need to moisturise my legs 20 times a day 😆 and agreed that she could also feel my legs were warm through all that padding. She cut it all off, bathed them then put emollient on then just dressings over badly effected areas and just used a double layer of comfifit bandage. Phew felt great to get that lot off my legs.

She also agreed it’s going be a struggle to get my legs under control as TVALS want them dry so I can have wraps again but like she said lymphedema needs to be kept moist with creams and coverings are going make my skin dry and probably I will react to any covering on them.

Anyway she was wonderful, she said I can roll the bandages down and put the steroid foam and creams on and the emollients as and when I need to but I can’t put them on the open areas, that’s going be hard but it’s a massive step forward from thick multi layer padded bandaging.

So now my legs can breath a bit and are creamed ! The nurse left me a big bag of different dressings, they don’t have moisturising ones and lots of spares of bandage etc. the bad news is I still have to have visits twice weekly until TVALS take over but it is what it is. She also mentioned about I really need to consider seeing a dermi, I will get into my docs about that.

Well that’s a brief update of the visit, we discussed a lot more but they are the main bits.

Thank you again for listening and putting up with my lengthy grumpiness yesterday 🤣 take care everyone xxxxx

[sleeviejeebies in reply to chazy]

I'm so glad you got to see someone more experienced and now have some relief. Hopefully you'll see some improvement. Good luck! 😊

[Loramay]

Hi Chazy I had this I reacted to anything that touched my legs after I developed ulcers on my right leg. I had lymphorrhoea constantly running down my right leg from my knee to my ankle in the end I bought some pads off amazon that weren't sterile and I had to take responsibility for them as they weren't sterile but they were very soft as it felt like everything else was rubbing on the ulcers and I was having to change them 3 to 4 times a day . I eventually got everything under control when I was told by a district nurse that keeping my leg elevated all day would help me, no housework,cooking etc so I stayed either on my recliner or bed and only got up to have a shower and get dressed or go to the loo,I made sure I had everything next to me including a flask of tea. Luckily I had the support of my husband and son and in 2 weeks it had stopped and was starting to heal it took another couple of weeks to heal enough for me to start putting my leg down but it worked.

[19381959]

Dear Chazy I'm so sorry to read of all.your problems & you are VERY strong & brave. I can't unfortunately offer any help.other than sympathy. I am extremely glad I don't have lymphodema-I was diagnosed with mild lymphodema- some years ago after having cellulitis twice but after.reading.your problems & others am sure I have never had it. I hope you get some proper help very soon to.help you cope.. The latest nurse who visited seemed to be a good help & hopefully she will be a regular visitor.

Thank goodness you have two daughters who are helping you.

VERY VERY BEST WISHES.

SHEILA xxx

[Perido]

Sorry if I'm going a bit off topic but I see you mention about being lighter. My lymphoedema team are emphatic about the importance of maintaining a healthy body weight. It seems that a balanced anti-inflammatory mediterranean type diet, and keeping well hydrated (limit caffeine and alcohol), is a way forward. Avoid processed convenience food. Lymphoedema is a very unforgiving condition and I think every little helps.

[DeadfootMo]

Hello Chazy,

I am mortified that you should be suffering like this and that the medical professional are not listening to you. The fact that they aren't listening is the sickening factor here.

I have actually heard lymphoedema specialists say that if patients don't want to wear compression or bandaging that there is nothing else they can do. It is like they are on this very narrow one way street and they can't see any alternatives, when there are.

So firstly, you need to treat the sores on your skin and the infections as these are very important, ensure that you have a district nurse coming from your surgery to treat you and keep at trying to clear up the infections. This may mean intravenous antibiotics for about 5 days and then long term antibiotics for 2-3 months at the same time as steroids for four weeks, starting at 40 (8 tiny tablets), for a week, then the next week 30 (6 tiny tablets) , and so on until you are on 10 (2 tiny tablets.) Once down to 2 tablets in the last week, the steroids need to stop. But your antibiotics will continue on.

When you start to see signs of improvement in you skin treat them with dermol 500 as a replacement for soap, and moisturis the skin with say hydromol. Don't be frightened to use a tub a week until your skin is on the road to recovery.

Once your skin is on the road to recovery avoid compression, and instead get walking along a clean sandy beach, ensure you wear sandels if you decide to paddle in the sea. join an art class or take up any hobby to take your mind off your troubled legs. Relax a bit with a book or your favourite music, with your feet up.

Don't let lympodema get you down, fight it and stay on top of it. If you can keep your weight down to something you can manage, that would be good for you.

All the best in your fight. Remember loads of us here have been to hell and back, you can fight this.