New and struggling

[JenH1942]

Hello, I have been reading blogs with interest. I have been suffering with a painful fish scale like rash on my legs and have been told that I should use rehydrating creams but this has not helped. During my husbands dermatology appointment I asked the dermatologist about it. He said that there was nothing he could recommend in the way of creams as the problem was an internal one and I needed to ask for blood and urine tests He took a lot of trouble and sent a helpful report to my home doctor. My tests had always been near perfect and came back so this time ! Months of pestering led eventually to a referral to a Cardiovascular consultant. Tested veins and arteries which proved to be clear and so ,by process of elimination he decided that it must be lymphedema and sent me home with the usual recommendations of compression stockings , long walks etc ... Diuretics (??) and hydrating creams - I think he's off track completely 🙄 He even , in his report suggested that I was suffering from long term depression syndrome , something I took offence at as I have been coping well with many difficulties at home of which he was made aware by my home doctor . It was such a way-off description of me that my friends and the medical staff at my local health centre fell about laughing - until they realised that I now had that on my records to influence the judgement of other doctors.

I must add here that about 16 years ago I was misdiagnosed with a hip problem and operated on to replace my left hip. Left with excruciating pain and many years later discovered that the pelvis had slipped and the wrong operation had made things worse ! The orthopedic people deny this and just kept telling me that the hip was okay and I should try to do more to help them. The traumatologist even referred to "What you call pain" and dismissed me as not trying to help myself. I finally came to my senses and got in touch with an osteopath who examined me and told me that the problem was the pelvis . Gentle manipulation put the pelvis back in place and I was free from pain for the first time in three years ! Unfortunately three years of strain on strong muscles proved difficult and though I was much better I still suffered pain alleviated by gentle massage, but the damage had been done and the muscles in my back apparently permanently damaged. I tell you this because it now seems obvious to me that the damaged muscles were those that are used to move lymphatic fluid around. The still painful but livable with hip./pelvis stopped me from walking much and gradually the lymphedema (?) set in.

Now living in a different area of Spain have been struggling to explain myself again. I told this history in a written report to the CV man, but his recommendations took no notice of my difficulty of walking and the pain I suffered for days after trying to comply with his instructions. There was no way that I could even think about getting into the compression stockings I was measured for ( in the pharmacy ) and bought. My doctor has been helpful in recommending medication but this is really only for blocked veins which I don't have !

I have needed to tell somebody all this and you are my unfortunate audience. Sorry , but it has helped me just writing it down 🙂

I am not depressed , just fed up and angry that I seem to be getting nowhere. I have to go back to see him again and look forward to confronting him with a few issues ...... But I am still awaiting the six-month appointment after nine months .

It seems pretty obvious to me that I now have two "socks" of cellulitis between knee and ankle which are restricting my circulation . Please, am I right in believing that cellulitis is an infection that can be cured with antibiotics ?

I need to be armed with a few facts before I confront the man when eventually my appointment arrives. In spite of my painful and prickly legs I am not going to take this lying down !!!

Okay, that's me done for the moment. Please don't think that because of two men's incompetence they are all like that here in Spain . Far from it, we have met some very caring and dedicated people and are impressed with kindness and thoughtfulness.. We love the Spanish folk and in spite of a couple of unfortunate incidents we hope to spend many good years here in our lovely home surrounded by caring and generous neighbours.

Thanks for listening .

[kHP22]

Hi there . My words you do seem to have been through the wars !! I've had Lymphoedema now for 21 years so although I'm not a medical expert I'll offer you my advice but I must stress that you should discuss everything with your doctor who is the best person to advise you . .

Lymphoedema can develop through many causes , you may be born with a poor lymphatic system or you can develop it as a secondary condition if you've had cancer treatment which involved damage to the lymphatics or following any sort of trauma or injury.

Sadly there isn't a cure if indeed you have the condition but it really can be managed . There are four corner stones of care in a self management plan and it's absolutely VITAL that any person with Lymphoedema complies with this or their Lymphoedena will get worse and be more limiting .

The first is skin care . Eventually with Lymphoedema the skin can start to deteriorate and crack and this is where infection can get in so putting cream on daily is very important to keep the skin soft and well cared for .

The second aspect is the compression garments . I know that these appear to be awful but they really do help . Of course they are very tight because they need to be to stop your leg swelling more but also to work with your muscles as you exercise because the lymphatics doesn't have a mechanism of its own to move things around our bodies . You really need to persevere to try to get them on by moving them up your limb slowly in small steps . If you get them bunched together in one spot it will feel like you're being constructed by elastic bands so just move a bit at a time . They are not the most attractive garments and I rebelled at first and thought I cant wear those they're horrible but you can't get away with this and your leg swells even more and then it's a knock on effect with more problems . I can't stress how important it is to wear your garments . If , when you've got them on , they still remain very painful then perhaps you've not been measured correctly so you need to see someone to check .

With exercise you have to pace yourself , too much is equally bad for your Lymphoedena just the same as too little is .

Cellulitis is obviously an infection in the tissues of your limb .Your lymphatic system is basically also your immune system - the way your body disposes of toxins . If your lymphatics are damaged then your limb will not have been working properly and it can be a breeding ground ideal for infections to develop . Cellulitis can make you feel very poorly in a really short period of time and yes it is treated with antibiotics but if you have a really bad episode then it may require intravenous antibiotics and a possible stay in hospital . The use of antibiotics though is limited as you wouldn't be allowed to repeatedly keep using them too regularly so this is why it's very important to look after yourself properly , to care for your skin, to exercise gently , carry out simple manual lymph drainage on yourself which is the fourth corner stone of care ( thus can be taught to you by a Lymphoedema practionet) and finally to wear your garments . Bouts of cellulitis can make your Lymphoedena worse .so it's something you want to try to prevent .

My first advice would be to see if you could join the Lynphiedema Support Network in London . They can provide you with valuable information and secondly try to see if there are any support groups in the area where you live . This might not be possible if you are in Spain but the LSN may know if there are any people that you can contact .

Sorry this is so long but I hope it might have helped initially

[JenH1942 in reply to kHP22]

Thank you for such clear advice . There are so many conflicting opinions that it is difficult to know. I have a good rapport with my doctor but there seems to be very little help available locally.

Thank you once again for taking the time.

[lizzie66 in reply to JenH1942]

You could try Balneum Oil and Balneum cream for the skin on your legs. I have lymphoedema but my surgery do not have any training in this debilitating condition and therefore have stated they cannot refer me to a Clinic where I would be looked at properly, measured for compression stockings and advice on massage etc. as they are not qualified to diagnose Lymphoedema in the first place. The only advice I have received is to use the above Balneum products (which I get free on script here in the UK) and I have to say that with daily use my skin is in much better condition now, reducing the risk of skin splits and bacteria getting in causing cellulitis. My skin literally drinks the oil and cream in showing how dry and cracked they were at the time I started their use. I believe you can buy these products on Amazon if you cannot get them in Spain. Sorry I cannot be of any more help to you other than on looking after your skin. Contacting the Lymphoedema Support Network in London will be of enormous help to you and they produce various leaflets on most aspects of this tiresome condition. They do ask for a contribution towards sending the leaflets which I was glad to send and I have given the leaflets to my surgery in an attempt to educate their Practice in the diagnosis and care of Lymphoedema. Unfortunately I fall through the cracks a bit as I do not have Primary or Secondary Lympho - I am in the Unknown Cause section!! Keep on fighting and hopefully you will get there in the end.

[JenH1942 in reply to lizzie66]

Thanks, have so much to take on board. Thank you for caring x

[Anne16]

Hi Jen,

I am so sorry but I think in the first instance you need to see a Lymphoedema nurse specialist/nurse practitioner. Antibiotics are useful in treating cellulitis, but they are sometimes prescribed as a prophylactic (taking small doses permanently), but I don't do this. When cellulitis is bad I take antibiotics. However, intermittently I also suffer with very acute eczema and previously doctors/nurses have misdiagnosed this as cellulitis. It is important to keep your skin super clean and well moisturised, I shower daily (salt in sweat can and does aggravate things) and afterwards use Double Base Gel to which I add essential oils - lavender, frankincense, rose and jasmine and I believe that whilst this does not cure the cellulitis and/or eczema, it does prevent them from occurring because my skin is well hydrated. Daily I wear compression knee high hosiery made specifically for my legs as they are both different sizes.

Also, from personal experiences and talking with my Lymphoedema nurses, trauma, depression, anxiety, upset etc., etc. can both trigger the symptoms of both and make healing a lengthy procees (in my case) cellulitis and eczema. Stay away from diuretics - they do nothing for Lymphoedema. I have primary (born with it) Lymphoedema in both legs. I live with it because I have to, but there are times, like the past 2 weeks when I am very unwell. Have had a bout of eczema which has become infected and goes from my toes to my knees on both legs. Better now, but it does take time to heal. Our recent bout of high temperatures has not help, standing even for a short while exacerbates things but walking and keeping active is what is required. Although now 75 I still work part time and I have an allotment.

Sorry for the longwinded reply. By the way I live in Birkenhead, Merseyside. I hope you can find something which helps in the above but please feel free to ask any questions and hopefully I can help.

Kindest of kind regards

Anne

[Brandish54]

Yes cellulitis is an infection and is usually antibiotics giving for it I know how frustrating it can be when people take no notice a lot of the medical profession do not have a idea about it nor treatment you need I have had this problem with having lymphoedema for 20 years plus along the way I have only met about six people that have listened and understood the rest do not realise what a struggle it is nor how much pain you have to endure best of luck take care

[JenH1942 in reply to Brandish54]

Thank Brandish54. It's good to hear that you have met with similar reactions. I have "friends" who say dismissively "Oh, lymphedema , not curable but it can be managed ." They have no idea of the pain , fear and frustration. I'm tuning in to so many differing snippets of advice .Things as differing as using cream/ or definitely not, not using diuretics but I have used them for years and they seem to help. Two medics who have helped me and whom I trust are a dermatologist and an osteopath. The former I have known for a long time and have much respect for told me very definitely that whatever it was , it wasnt something he could treat as it was an infection from within and should be treated as such. The osteopath confirmed this and won't do the lymphatic massage on that area as she's saying no cream as the infection needs to breathe .I'm beginning to think it isn't lymphedema ? It's difficult living here in Spain as I have to cope in Spanish and that's okay except when talking things medical and my knowledge is so limited that I probably wouldn't even understand it in English 😖 No choice though as my husband is 99 and very frail so couldn't contemplate a return to UK.

Still awaiting my second appointment with Cardiovascular consultant and am seriously thinking of going to someone else privately.

I would like to keep in touch with you if I may as I think you are the first person who has not told me to get in touch with my local lymphedema clinic. Where ? They have hardly heard of the infection !

I can cope with the pain but I'm finding the frustration of being ignored more difficult and rather frightening . We are lucky with local friends and neighbours who are so loving and caring.

All the best to you and thanks once again as I was beginning to wonder how my poor husband would be able to survive without me ! Now I know that's daft and I'm not going anywhere yet 😊. Love pottering in the garden and until recently did all my own maintenance , design , planting etc . Now the weeds are winning so have got help with the heavy stuff. I'm keeping as active as possible and will be carrying on for as long as it takes.

All the best and thanks for giving me hope.

[Brandish54 in reply to JenH1942]

Please do keep in touch I would like that keep smiling when you can and remember I shall be here to answer questions as best I can take care god bless

[Brandish54]

Please do keep in touch I would like that keep smiling when you can and remember I will be here for you if you need questions answered as best I can take care god bless

[JenH1942 in reply to Brandish54]

Hi dear friend, am still waiting for that wretched CV man. Thought I might try a website , just forget it's name but they find a consultant for you. So I typed in lymfedema Spain and got a reply that there are four (yes4) in the whole of Spain! 3 in Madrid but one discounted as he was a pedeatric cancer man, and one in Marbella.None less than a 5 hour drive from us. Well I tried one in Marbella and wondered if she could advise me over phone and with photos . She called me the very next day and she was a charming Finnish lady who spoke brilliant English. But not possible unless she can see me and I explained the circumstances. She spent almost an hour on the phone reassuring me that something could be done for me and making me feel so much more comfortable. One good bit of advice that I still have to follow up was to try the search company I used to find her but type in Portugal as we are very near the border and Lisbon is much nearer.Have been out of Internet connection for 90 hours after a storm ! Now back in the real world again. 🤗 So plan to get on with that soon.

In the meantime she advised me to stop taking diuretics (40years plus) as they didn't do the lymph system any good and I have no heart problems at all. So I'm weaning myself of them and already feel better. Even the rash seems to be a bit better. A good dose of antibiotics could now put me nearly right I feel sure. Each time I went to the doctors here all they seemed to do was double the dose of diuretic and give me Venorutin as "it might help." Sort of helped as it made my nose bleed ferociously 😧 Each time I took them. So I can only imagine that the CV man was right and my veins are just fine.

Thank heavens for Internet research . We love living in this area but it is just so far from anywhere. Maybe Portugal will be a better bet.

Hope you are doing alright. Keep me posted as to how you get on, and thanks for keeping in touch. Where are you living?

All the best Jen

[Brandish54 in reply to JenH1942]

England but I have found over the years nobody has a lot of time for this stupid illness and they look at you with disbelieve when you explain what it is like and it all comes down to cost every time In 2009 I was admitted to hospital after I had very bad infected with septacema excuse spelling they said my organs were closing down they expected me to go within 4hours . Pulled through that it was caused by cellulitis which is what you get when you suffer with lymphoedema . Also in 2013 was admitted again with badly infected legs only to find caused by the fact the doctor refused to give me antibiotics because I was not that ill he said . While in there I had all kinds of tests scans on legs to check blood flow all was fine . They found my heart blocked left side no treatment just take warfarine tablets to keep blood flowing through heart easier no operation to cure it . The good thing that came out it was anything to do with heart treatment the doctor pulled his socks up but still rubbish treatment for lyphoedema . Never mind I am the kind of person that cope with things that are thrown my way and try not to let things get me down which you have to be with an illness of any kind . Anyway sorry to have gone on all the best wish you well do let me know how things go will be thinking of take care . All the best to you husband as well . Your Friend Wendy