cellulitus again: Hi I have cellulitus in my lymphoedema... - LSN

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cellulitus again

ameliapond profile image
15 Replies

Hi I have cellulitus in my lymphoedema right arm my last bout was Dec 2016.I feel it is a bit different each time either its onset or after.I take it that only folks with lower lymphoedema have to have bed rest? I do support my arm when sitting.It is swollen,and I am not wearing my compression.What does one usually feel like two and a half days in?.My medication is flucloxacillin. My heart beat is a bit quick and i am a bit out of puff.The redness has gone,but my hand and forearm is warmer than my normal arm.Any thoughts please.

Thanks

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ameliapond
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Lynora profile image
Lynora

Ameliapond - cellulitis is a systemic infection, and must be taken seriously by anyone who has it. Bedrest is not just relevant to lower limbs. If you are still feeling unwell after 72 hours, you may need something stronger than flucloxacillin.

prettyinpink14 profile image
prettyinpink14

To be honest just give your surgery a ring to put your mind at rest. I always thought a trip to hospital and Iv for celluloid? Hope it gets better soon

Ldd1412 profile image
Ldd1412

I would go and see your GP. Sounds like You need something stronger. I am just coming through the other side and after a week of fluclox I needed up having 2 weeks of IV ceflacor and now on oral clarithromycin. Please monitor your symptoms. I don't want to scare you but cellulitis that is not managed properly can lead to sepsis. If you are unsure just go back to your GP or present at A & E

L2tr profile image
L2tr

I have suffered many bouts of this awful condition it sounds like you need something stronger if you are feeling like you are. I would ring your surgery or go to the hospital. Hope you feel better soon.

Hello Ameliapond, have just seen your post and wanted to say, if it helps at all. I am having yet another bout of cellulitis although it is in both my legs just below the knee. This time though I have felt very different from the last, have felt so very cold this lasted 2 days and had a feeling like I was getting a cold, but it was'nt. This is day 5 of 14 antis clarithmo 500 mg and I am still not feeling too good, legs still red, may have faded a little but then in another position look different again. Guess will have to wait for antbiotics to work a few more days.

What I have been trying to say is after quite a few cellulitis bouts this time it has really knocked me for six. So perhaps it is the same with arms? I do not know, but there are so many kind considerate helpful people here as I have found out, and as we are all like a huge family with this lymph/cell thing you can be sure of finding a right answer.

I hope that you will soon feel better,

Take care, xxxxxx

sammyvan profile image
sammyvan in reply to completely-zero654

Hello again, Completely.

So true that every bout of cellulitis seems to feel and act different. As I have posted on here recently, I am now on my 5th week of Clarithromycin, 500mg twice daily. I still have the red legs, but NO HEAT. That's a plus. I have been struggling to cope with it mainly on my own - not knowing if I was doing the right thing. On Thursday evening I reached the end of my tether, found the email address of Lymphoedema specialist nurse I last saw 2 and a half years ago - in Wiltshire. Wasn't sure if she would even remember me, but I thought nothing ventured - nothing gained! Within an hour, about 9 at night, she had phoned me! I was in tears by then. We went thru the entire regime, cleaning, treating, what creams etc, and she gave me her thoughts. She stopped the Dermol, stopped the Elocon and said for the night to use Diprobase only. On Friday she contacted the surgery I use, and the district nurses team, and had given them a completely new care package for me!! She wants me to have a ''Doplar'' test? Never been given one before. I now have to use QV wash and QV cream, as well as Cavlon barrier cream. Over the wounds - because there is so much Lymph leaking, I have to use huge pads to sop it all up.

Only problem is that all these items have to be ordered by the surgery/nurses, and wont be here till Monday or Tuesday! So still battling on my own, though I did manage to buy QV cream over the counter, a huge tub of Diprobase ointment and am using Tena pads to help with the lymph. Now I just have to wait and hope the nurses come soon!

One new problem though, which maybe someone could help with? I woke yesterday with a pain inside my left leg, inner side above the knee? No sign of any red area, no swelling, not hard, just very painful? My mind immediately went into panic mode - wondering if it could be something like a clot? Of course it's Saturday today - nobody to contact and ask for help until Monday. I feel okay in myself, no temp, no hot/cold spells and the legs are red, but not that horrible scary bright red. My mouth is very tender, but whenever I take antibiotics for a length of time, that happens.

Is this something to worry about? Or should I ''wait and see''?

Have a good weekend, all of you lovely folk.

sammy

completely-zero654 profile image
completely-zero654 in reply to sammyvan

Dear sammy you have left me with tears after reading this and wish I could give you a hug. Is there anyone close enough to you by phone, neighbour anyone? If not I would (and this is thanks to lovely Lenora), Some how get to A&E to get it checked out and please do it NOW. We all care about each other here as we are more or less the same. Sammy please please get to A & E, remember it is better to be safe than sorry it will put your mind and ours at rest.

Bless you for the info, but you are important at this very second, go get sorted and lets us know.

Peace and blessings......xxxxxx

sammyvan profile image
sammyvan in reply to completely-zero654

Dear Completely,

First chance I have felt like sitting and using the computer! But the good news is that I seem to be on the mend at last.

On Monday the district Nurse team leader[ who has experience in some forms of Lymphoedema ] arrived with dressings and lotions. By then my legs were bright red, weeping large amounts of lymph, and I felt like I had a major dose of sunburn all over my lower legs. Temp was up to 38c and I felt awful - and at the stage where i just didn't care any more.

She took blood tests, photographed my legs for the doctor, told me to stay put with legs elevated and was gone. Back later, after a chat to the doctor, they had decided they would try to treat the infection at home and see how it went. As my legs were not hot, and apart from the temp, I was okay in myself, I avoided hospital!

I am now on QV wash for the legs, followed by QV cream. Also suggested was Aveeno Cream [ I saw someone else here mention they used this?] I am also having a ''leg bath'' every morning - Permangenate [?] of Potash. Have to sit with my legs in water, with one tablet in each bucket, up to my knees. Nice and relaxing - but what a mess getting feet out after!! I have to use a small jug, empty as much as possible of the water, then slide the buckets onto their side and ease feet out. However much mess it makes, it does seem to be helping dry out the lymph, and the majority of the small tears in my skin seem to be healing. After the water treatment both legs are creamed, covered in some ointment, then huge Kerramax pads and finally Actifast yellow line to keep everything in place. The Elocon cream will be continued until the skin is clear, then phased out. Only for episodes like I have just had.

Very long winded post, but I thought than any info may be useful to other folk on the forum. We all struggle to find things that work, and all have different skin types. Mine seems extra sensitive, and therefore many creams too harsh - like the Dermol. Nobody tole me that Dermol could only be used for a period of time, and I have been on it over two years! No wonder my skin was screaming at me!

I do hope all is well with you, and that you have managed to get on top of the Cellulitis by now. It really does drag you down, and make life quite ''Yuk''! Thinking of you and sending a big hug.

Best wishes to all who are in the same boat right now - we WILL beat this horrible disease!

sammy

completely-zero654 profile image
completely-zero654 in reply to sammyvan

Dear dear Sammy, thank the lord you are still with us, have been thinking about what was happening to you, so pleased you are well enough to write such an informative post but am over the moon that you are as right as can be. I think you are so very brave to have endured all this, it sounds horrific and you deserve the biggest cuddle from me and us all. How in this world did you manage before you got hold of a nurse? I thought you were going to try to either go to A&E or call someone to be with you! I feel so so sad knowing that you were on your own, bless you Sammy having to go through all that. You must have been so worried all alone, I for 1 would and I bet a lot of us would have been.

All those years of using that prescribed cream? I know it is a while ago but your doctor should be sent pictures of what it has done to your poor legs. Just can not take it all in, why on earth did'nt they have you in hospital, temperature or not surely being in a state like that the nurse should of got the doctor to have had a look. You really are so very brave looking after your poor legs day in day out and having to go through all that routine. I feel so lucky that mine only get red & hot and that in it's self makes you feel ill, do not think I would be as strong as you Sammy in coping with such poorly legs.

Sammy, I hope and pray that they will get better now you have the right creams and washes. You should have some help with all that routine, can your nurse not pop in to give you some help?You need someone to come and help every day you should not have to cope with all that on your own. I am so sorry you are having to cope with this.

I know one thing there will be no way I will ever complain about my legs again, after what has happened to you mine is nothing to worry about, and I thank you for sharing this with me and us all having this curse.

Sammy please keep in touch on here I and all of us need to know how things are getting on with you, I care and we all care about you. Just know that so relived that you are on the mend.

Huge hugs, luv & blessings xxxxxxxxxxxxxxx

JH79 profile image
JH79 in reply to sammyvan

Dear Sammy. I have some of the things you mention and as someone mentioned earlier that an iv would help you immensely, the Macmillan nurses called on me twice in the past, my doctor got in touch with them I was treated each day for two weeks, they are like angels, mostly a different nurse each day and each one as kind and considerate as the other, I dont know where you are, but my nurses operate out of Truro in Cornwall. I want you to ask your GP to do the same for you and wish you a speedy recovery.

Best wishes Jim

sammyvan profile image
sammyvan in reply to JH79

Dear Jim, your reply is much appreciated and the points you raise are indeed valid. I know in my heart that if I had been brave enough to ask for hospital admission and IV antibiotics, I would have saved myself a lot of pain and misery. The unfortunate thing is that last year I did indeed have that treatment, 3 1/2 weeks on IV and also Clindamycin oral , a strong dose as well. I kept telling the nurses and doctors, towards the end of my stay, that my mouth was extremely painful, I had wheals and raised bumps, bleeding, on both arms and my chest.....I also had the most awful bowel problems - I ended up passing blood after being released from Hospital! My hubby went to see the pharmacist at our local Lloyds, and was told I must stop the Clindamycin IMMEDIATELY. I was apparently allergic - or had developed an allergy during the three months they had me on the drug. The fact that nobody picked it up, that I had all that extra misery.... I guess it scared me so much I am terrified to go near the place again!!

I have a wonderful group of District Nurses now, who try to do the best they can for me - it is lack of Lymphoedema knowledge that is the problem. The only nurse who has experience in this field, was away on leave for the two weeks that I was at my lowest. What I call ''sods law''.

At present they are coming everyday, sometimes twice, dressing my legs and also giving me a soak [ both legs ] in permangenate of potash. Seems to be drying up the awful weeping patches- so fingers crossed.

I am feeling so much better, and tomorrow the nurses are getting me back into compression, as my skin has improved enough to take it.

I can;t tell you how much your post, and the others above, have meant to me. This forum has been a lifeline, and all you folk feel like family now!

Love and Peace,

sammy

ps I am in Dorset - no Lymph service at all!

ameliapond profile image
ameliapond

Hi everyone thank you for your messages I am very grateful I don,t know what I would do without this web site,everyone has been so kind. my cellulitis has been reached by antibiotics I am still swollen in hand and arm though.I am seeing my GP in just under 2 wks time and will ask for more antibiotics and want my lympheodema arm properly accessed. As it is troubling me with pain especially at night(I wonder if it is the cellulitis that is damaging my arm) I mentioned it before but all GP said was ,is that its difficult to tell.I then was sent to physiotherapy.Does anyone else have trouble sleeping? I have made a small pad to support it in the night.

xx

Lynora profile image
Lynora in reply to ameliapond

Are you already under the care of a Lymphoedema clinic? If so, do not wait to discuss this with your GP. Call the clinic and get an appointment to see them.

ameliapond profile image
ameliapond in reply to Lynora

Hi Lynora I told my lymph nurse at my last clinic that the pain had got worse and she told me to see my GP. I think she thought it was not connected with the lymphedema My GP thought it might be frozen shoulder but physio said it was not. It's very frustrating. Thank you for your help.

Shazp profile image
Shazp in reply to ameliapond

Some doctors say you don't get pain with arm lymphodema I did not at first but I do now it can be very painful mostly if it gets hot when I cool it down it helps and painkillers

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