Thursday, 8 November 2012


To new readers: The following happened during my big walk in Spain.

So I had Cellulitis for the first, and hopefully, only time.

The beginning
It started the day before I realized it had started. One day in the afternoon after about 15 kilometers of walking I was feeling kind of tired. Not just because of the walking, which I usually hardly felt after a little rest, but some other kind of tiredness. I was certain that it was because I hadn’t been drinking enough water, combined with the time of the month and also the stress I had experienced coming into that town. It was a larger town, it was marketday and very busy and I just couldn’t find the hostel I wanted to go to. Old ladies wanted to sell me cheese but I wanted them to show me directions. Eventually I found it, drank water, unpacked, went out for lunch, came back, showered, drank lots of water and rested. I think I even fell asleep for a bit in the afternoon.

Next morning I didn’t notice anything unusual so I set out for 14 km of walking. After only perhaps two km I felt sick and before I knew it I was throwing up and shivering with fever. I was in a forest and as I went to "the powderroom" I pulled down the compression stocking to check my leg as it felt warm I saw a red patch. I thought it was just the stocking having rubbed against the skin. I continued walking but had to rest every chance I got. After another two km I got to a little cafe where I decided to have a break and a cup of tea. I was miserable. I knew there was another ten km to the next hostel and as I sat there I realized it would not be safe to walk much further so I got the guy behind the bar to call for a taxi. As it pulled up I was spewing my guts outside.

Having arrived in the nearest town I found a little pension where I got my own room and bathroom. I found a heavy blanket that I put over the bed and went in with all my clothes on, I was shivering. After a bit I took the stocking off and most of my leg was very, very red and burning hot. The thought of Rosen/Cellulitis indeed struck me but I had never had it before and I wasn’t sure exactly what it was supposed to look like. I slept and rested for the rest of the afternoon.

I hadn’t eaten much so by dinnertime I decided to wrap my leg with the few rolls of bandages that I brought (didn't dare put the stocking on the red, hot leg) and went to the next door restaurant to eat. That went fine and I even went to check my e-mail afterwards at an internetplace. I decided to wait till next morning to make a decicion about seeing a doctor. I knew that the leg would still be red next morning but perhaps it would be a little better. It wasn’t. In fact it was worse. Stepping out of the bed to go to the toilet the leg felt tight and sore and at first I couldn’t even stand on it. It felt and looked very much like a very severe sunburn. I asked the staff to call for a doctor but they said that I had to go to the doctor as the doctor would not come unless it was really, really bad. I dragged the poor fellow into my room and showed him my leg and when he saw it he went "I’ll carry you to the doctor myself"!!! He didn’t have to though, as paramedics came and took me to the local clinic.

In hospital
The rest is history, as they say. At the clinic they took a quick look at me before sending me to a big hospital in Santiago. There I first went through all the standards – blood tests, blood pressure, cardiogram, ultrasound, X-ray etc. Around dinnertime they gave me the first bag of antibiotics, intravenous. I had never tried that before and I hope I never will again. I had quite a fever, more than 39°C so that was a lot. It took a good few days before they got that under control.

Already after the first night of antibiotics the looks of my leg had improved. Not nearly as red and hot so that was good. Still, the second I put my leg on the floor to go to the toilet it turned dark red/blue and puffed up. As if no valves or anything was working. That had me quite worried but after a couple of days that too got better. At first I worried a lot about whether the doctors knew what they were up against and if I was given the correct treatment, but once I heard the diagnosis – Cellulitis – I was certain that they were right and that the treatment was the right one. And it was. I asked the doctor if she knew about Lymphedema and apparently she did a little. That was also reassuring.

After perhaps four or five days the medicine started being a little harsh on my poor veins and they had to shift the IV several times. I was so worried that all the injections would cause Lymphedema in my arm. The last time they shifted it was rather traumatic. They had a very hard time finding places to inject as my veins apparently are not very visible. When they finally did and I afterwards lay in the darkness with both arms sore and wrapped up I couldn’t help a good cry. The next day they put me on tablets instead. The first ones made me sick but then I shifted to some powder that I later found out is for children ;-)

Day by day my leg got better, both the colour and the puffy sensation when up. The last couple of days there I was up for an hour or two each day walking around carefully, with the stocking on. Preparing for life outside the hospital.
After ten days in the hospital I had persuaded them to let me go, so an early morning I was put in a wheelchair and taken to the airport where staff took me to the plane in a wheelchair and I flew home. Even though Dad had just gotten out of hospital that morning (more about this soon) he and Mum collected me and took me home to my flat. Wonderful to be home again. My bed felt so soft and comfy.

My stay at the hospital wasn't horrible. Almost all of the staff was very kind and I was treated very good. Unfortunately only a couple of them spoke a tiny bit of English so I couldn't communicate much. The last couple of days a really kind American doctor working there came to see me. The worst bit was by far the IV. I hope I will never have to go through that again.

What brought it on?
It is hard to say. The doctor at the hospital thought it started with a small infection I had had around the nail on the big toe. I am not sure about that as it seemed to have healed up nicely and also because the red, hot sensation didn't seem to start from the foot but more around the knee area. Who knows... I imagine it had to have come from the outside, not just from a weak body so perhaps the doctor was right. I guess I should have been much more carefull with all those blisters but it was the good old "it won't happen to me" – or rather, it just didn't cross my mind because I had never had Cellulitis before and I consider my skin and my health in general to be quite good.

I am good now and I am finally off the tablets. Still feel tired but I guess that's only natural after all this. There is still a tiny bit of discoloration to see a couple of places but hopefully that will disappear over time. My skin has been very dry since I got better, especially on the foot. It seems like the skin is renewing itself, a little like after a sunburn. I am like a snake, changing its skin. After all those days of lying down the size and shape of my leg was better than it's been for years, how ironic! It still looks allright but will probably fill up soon.
Some say that having had Cellulitis once one is more prone to it in the future. I hope this is not true. Hopefully my leg and my skin will become just as strong and healthy as it was before, and in the future I will definitely be more careful.

The trip altogether came to be much different than anticipated. A curious thing is that for months and months ahead of the trip I had been longing for some kind of break from my life at home. For example lying in a seaside hotel somewhere starring at the sea, reading books. I got my break, but in a hospital. For the first week I was alone in a three-bed room which was nice. One had to put coins in the TV and after a day or two I ran out and no one could change for me so there was really nothing to do but just lie there or read. My sweet Mum was super, on the second day she send me a package with newspaper, magazines, a book, knickers and chocolate, it arrived the next day with a courier. Also, the doctor went out and bought me a book, really sweet of her!

If you want you can see a couple of pictures I took on the night before I went into hospital. I took them so I could compare the next morning. They are not too gross, I just thought people should have a choice of not seeing them. I put them here. The next morning it was worse than this, by then the knee was almost all red.

Thank you so much for all your comments! I have some catching up to do with replying but I am working on it :-)


  1. Oh, so sorry to hear this happened to you - especially in a foreign country. Glad you were able to get some "rest" out of the experience after all, and I love the image of the care package and the doctor buying you a book.

    Yes, this is almost my experience exactly: really tired, went home fine, within two hours of going to bed the chills, throwing up, over 39 fever, hot red leg. Dummy that I was (and inexperienced) I didn't go to a doctor until the next day (she thought it was probably flu but luckily gave me some antibiotics) and waited until the NEXT day to get to a hospital. Tests and immediate admission! There's an infection marker blood test, CRP, that's usually 0.02 or so, but mine was 22! Luckily I started responding to the IV antibiotics immediately, but I too had to have them switch arms over the week...after that time was covered with bruises. In my case the source of infection was actually a cut that my then-clinic didn't tell me might be a problem, even though they saw it. (Needless to say, I'm not with that clinic anymore.) And yes, there were funny bits too, including when the whole Infectious Diseases team - doctor, attendings, residents and interns - clustered around my bed asking questions...with one guy who was obviously trying to suck up to the top doctor asking in English to show off.Oh, and one of the interns came to photograph my leg because I guess they'd never seen a case so bad. Before he took it he said, "Don't worry, I won't post it anywhere strange, like on Facebook." Haha

    I had the dry skin and flaking off of the rash too. I just put my usual lotion on it and it cleared up in a day or two.

    I too have heard that if you get cellulitis once you can get it again more easily, also that it worsens the lymphedema - glad your leg is actually thinner. I've since heard that there are all degress of cellulitis, and some can be as mild as redness/hotness treated as an outpatient with antibiotics. In my case and probably yours too, it already had spread into a major infection.

    Since I'd only been diagnosed with lymphedema four months previous, this made me very paranoid about lymphedema in general and very anxious not to get sick again, something I'm only starting to get perspective on a year later. This was before I wrapped and began the lymphatic drainage course I'm on now, so my leg was much more unstable. My therapist said to me a few months ago that my leg was stabilized and in good enough condition that cellulitis was a lot less likely now. Still, I keep a close eye on things and have antibiotic tablets at home just in case. From what other people say it seems to be a matter of luck in many cases, so who knows. This is one reason I'm a bit nervous about travel to exotic places like Laos.

    Anyway, apologies for the novel, glad you're home and recovering! Take care

    1. Hi Elaine,
      It really it scarry how quickly it can come! They took pictures of my leg too, I wondered what they were gonna do with them, perhaps send them to experts at other hospitals and ask, perhaps. Or post them on Facebook, he he ;-)
      I think I might have had a touch of Cellulitis in the spring but so little that the body was able to take care of it itself. This one was way too much though, a major infection. I will definitely be more aware of avoiding cuts etc. now but I do think my health is generally quite good and I have a strong body so unless I put myself in an extreme situation like this walk again I wouldn't think I am likely to get it again, but who knows. Fingers crossed :-)
      About Laos, do go! If something happened I imagine you would be taken straight to Chiang Mai or even Bangkok. I have been to Laos with Lymphedema and will do it again. I know what you mean though and I don't think I will be going on say a ten day jungle adventure in Irian Jaya after this :-)

    2. Ha, we should do Laos together! My thought has been that if I'm within a day's flight to medical treatment it'd probably be okay if I have antibiotic tablets with me. But yeah, that shipboard diving trip to the outer edges of the Indonesian islands probably isn't such a smart idea anymore :) (sigh, I really wanted to go there).


    3. Laos rocks! Yeah, perhaps best to cancel that Indonesia diving trip ;-)

  2. Like Elaine, I am so sorry to hear about the awful experience you had with cellulitis, especially in a different country. I recently had my first bout of cellulitis and also ended up in hospital on IV antibiotics. The drip had to be moved to a different place in my hand/arm every 72 hours so after 8 days I had almost more pain in my hands that in the affected leg!

    I was also told that once you have had cellulitis you are more prone to getting it again and, like you, also hope this isn't true. I found that applying lots of cream twice daily helped the dead skin come off and the new skin below grow better. I still have the discolouration though and my infection was in early September.

    It is nice to know that the kindness of others still exists and can make such a difference to our lives. Thank you for sharing your story and I wish you an infection free future.

    1. Hi Linda, thanks for writing :-)
      I too hope it is not true that having had it once one is more prone. Who knows.
      It was unbelievable how the skin on my foot came off and completely renewed itself, like a snake. My foot is now like a babys bottom, so soft.
      Thank you for your sweet words and for reading my blog.
      Best wishes

  3. I too have had cellulitis, over the last five years I am up in double figures of the visits to the doctor and four times kept in hospital over eight days each admission. In fact I have only just come out again, second time in six weeks.
    My temp was 41, left leg like it was covered in tomato sauce, really badly swollen, severe pain etc.
    Am now on four pencillin tablets twice a day for six months after eight days of four times a day IV's which like yours was almost impossible to site, 14 times in 3 days they were moved or fell out! In the end I had a line put into my top right arm, only way to keep drip in.
    If you fancy a chat about this Email me please, first time I've discovered others with same problem, thought I was alone,

    1. Hi Sue, you have certainly had your share of Cellulitis, OMG! You are so not alone. When I go to meetings in the patient association overhere there are many of the others who, even regularly, have Cellulitis. I didn't think it would happen to me. Perhaps, as it's been suggested in other comments, it is handy to keep som AB at home to take before it gets out of hand. I will definitely bring some next time I go away. I have heard that a product that overhere is called Surlid is quite powerful.

  4. Wonder if there's a way of pooling our knowledge/experience with this awful thing for everyone's benefit? In both your and my cases we "wondered" about it but didn't know for sure and delayed treatment...what do earlier, lighter cases look like? and so on. Could be useful for everybody.

    1. Hi Elaine, that would be handy, I am going to think about this and see if there is something we can do.

  5. So sorry that happened to you. I'm glad to here that you're healthy again.

    I have primary lymphedema in my leg and I've had cellulitis as well.

    Mine began after I wore colored socks when I had a cut around my toenail. A thread from the sock worked its way into the cut and it got infected. I remember one of my family members, who did not have lymphedema, getting an infection from colored socks in their foot as well. Because I knew what it was, I cleaned it thoroughly with alcohol and was able to go to the doctor and treat it with antibiotics at home.

    I have just started reading your blog, so I don't know if it's posted somewhere, but do be careful wearing colored socks, as the dye can cause an infection if there is a cut or sore.

    1. Hi there, thank you for your kind words. I too am glad that I am back to where I was before and that this whole thing is over. I hope I will never get it again and I am definitely bringing AB next time I go anywhere.
      I never would have thought that coloured socks could trigger an infection! Thank you for this warning!
      Warm regards

  6. From my 20 years of experience with cellulitis - here are my tips for surviving and thriving. Always have an AB prescription on hand ESPECIALLY if you are traveling. Always wear some sort of rubber shoes into the bath area in any strange place - like a hotel OR even staying at a friend's house for the weekend. Never let your feet touch a wet surface, like at a gym shower. Athlete's foot is your ENEMY!
    When you go to the beach, sand is your enemy. I think it creates microscopic cuts in your feet that let bad things in. If people come to visit you, be sure to vigorously clean your shared bathing area before using it. If I forget my special bath shoes, I will wrap plastic bags around my feet before showering. Be careful of cat scratches. Keep kitty's claws groomed short.
    Learn how to recognize the onset of cellulitis. For me, every morning I wake up and feel my legs. If they are warm or hot, I pay close attention to how I am feeling. If I feel "not me", I will be ready to jump on the antibiotics within 2-3 hours, if it doesn't improve. It is always better to catch it VERY quickly before it spreads.
    Good Luck. It's a bitch, but it is manageable.
    Laura (Michigan,USA)

    1. Hi Laura, thank you for writing and thank you so much for these invaluable tips!
      I will definitely carry AB next time I go anywhere and also get some to have at home.
      Reflecting on your comment I guess that all those showers in hostels I stayed at were in invitation to infection in the blisters I had.
      I think I thought that I was invincible. That Cellulitis only happened to Lymphedema sufferes with a really bad health or poor hygiene but now I realize that until my trip to Spain my foot and leg had lived a quite protected life. Now I know it can happen to all of us and it really doesn't take much. Thanks again for the tips :-)
      Warm regards

    2. Oh, and it's a known fact that the cabin pressure in air travel set off lymphedema. And I'm living proof.

  7. I have a cautionary tale after having lymphedema (secondary) for the last two years. A year and a half after my lymph nodes were removed in my right leg (cancer surgery), I had not had any lymphedema whatsoever. None.

    Then. I flew to England from the US for a two week visit. My ankle began to swell immediately upon my arrival in England. The swelling traveled up to my knee. Upon my return to the US, I went to see my doctor. I had CT scans to make sure I wasn't dealing with a blood clot. I was finally diagnosed with lymphedema, and soon I went through physical therapy to learn MLD. I was measured for a stocking, and this seemed to do the trick.

    Then. Over a year later, last October, my daughter got married in Ireland. I wore my stocking on the flight, but upon my arrival, I noticed my leg had swollen all the way up to the top of my thigh. After two weeks of stressful travel, I noticed my leg had turned red. I felt terrible during this visit, but I tried to blow it off.

    When I got back to the states, I went to my doctor and she again had me get a CT scan to rule out a clot, but again, it was the lymphedema, compounded by cellulitis. I was given an oral antibiotic, which did not get rid of the infection. On Friday, it got worse, so I called my doctor. She sent me to the ER, and I was admitted for IV antibiotics.

    Here's the part I want to emphasize that may not have ever heard. The IV antibiotics they gave me were vancomycin, a known OTOTOXIC drug. I had sudden sensorineural hearing loss in my left ear. There are better, less ototoxic antibiotics you should insist upon getting. You can look this up for yourselves. I was tested for everything else that could have caused this - and these things were all ruled out. I will never take another "mycin" drug again.

    My thigh is quite large (I'm a small woman), and I struggle with finding clothes, just like you all do. Thank you, Lymphedema Girl, for creating this blog.

    I hope this has been helpful.

    1. Hi there, thank you for your input, much appreciated! The sideeffects of the drug you mention are scarey and I hope many readers see this and remember if/when they need a heavy drug for Cellulitis. I checked the report I got when released from the hospital and it seems to be some other drug I got.
      Thank you for you kind words, it means a lot to me that you guys find my tips useful!
      Take care.

  8. The Cellulitis Treatment is aimed towards decreasing the severity of infection, speeding up the recovery, relieving pain and other symptoms, healing of skin and prevention of reoccurrence of infection. Antibiotics are given orally if the infection haven’t took the severe form yet and is limited to skin layers only. If the infection has spread to bloodstream or lymph nodes intravenous administration of the antibiotic may be needed. Commonly given oral antibiotics are penicillin, cephalexin or cefaclor. If allergy to penicillin or ceplalosporin is developed then erythromycin can be used. If the infection has targeted the limbs then elevation of the effected limb is suggested to prevent swelling. Application of warm compresses to the affected area can be of help.