Cellulitis is defeating me

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The pain & swelling in my LEFT foot started on 10/2, I did not head to the ER until 10/5, at which point I had a gigantic, puss-filled “sore” on my left butt cheek (which I had been draining  myself – from which it drained pink/orange puss with little black dots) and 6-7 white/translucent sores inside my mouth. Keep in mind I was using meth/heroin via IV at this point.

ER on 10/5 immediately diagnosed me with cellulitis of the LEFT foot, as well as blood pressure greater than 120/80 mmHg, temporary due to drug use.

During ER visit, I was given:

Benadryl 50mg IV injection (apparently I had an allergic reaction to an IV antibiotic that I was not informed of; all I remember is becoming unbearably itchy).

Piperacillin-Tazobactam (Zosyn) 3.375 g/30 mL IV injection (penicillin antibiotic)

Potassium chloride tablet (that I spit out)

Sodium chloride IV

Vancomycin 1g/250mL (antibiotic)

 

They discharged me 10/5 (same day) & sent me home with sulfa-trimethoprim 800/160mg, as well as Amoxicillin 875mg (probably because I have had a history of MRSA, ironically in my feet).

IV drug use continued.

Infection worsened significantly & spread from my LEFT foot, to my RIGHT foot & RIGHT LEG, but my LEFT foot remained significantly worse than the right foot/leg.

 

I returned to the ER on 10/7 & was hospitalized on IV antibiotics until 10/11.

IV drug use discontinued on 10/7 & I detoxed in the hospital. I was discharged on 10/11.

During the hospitalization 10/7-10/11, I was also diagnosed with:

Sinus Tachycardia: a sinus rhythm with an elevated rate of impulses, defined as a rate greater than 100 beats/min (bpm) in an average adult. The normal resting heart rate in the average adult ranges from 60–100 beats/min.

Hyponatremia: A condition that occurs when the level of sodium in the blood is too low.

Hypokalemia: deficiency of potassium in the bloodstream.

 

All three of these things due to IV drug use & I am assuming are resolved since the IV drug use stopped.

The cellulitis, however, is not.

Upon discharge on 10/11, I was sent home with Cephalexin 500mg.

Cephalexin treatment ended 10/18. At this point, I had tightness in my RIGHT leg. Walking was moderately difficult but became extremely tight & if overly exercised & the pain became unbearable (to the point of tears).

I headed to inpatient treatment for my previous drug abuse on 10/19 & was sent home the next day because they did not feel comfortable with medically clearing me.

I went to see my primary care physician 10/21 & she had no clue what to do, she put me back on the Cephalexin & called infectious disease, who suggested an MRI of the LEFT foot, which is purple & the veins & peeling skin make it look like it belongs to a vampire, however it is in no pain what so ever.

My RIGHT foot & leg (up to my knee & particularly in my calf) is in unbearable & overwhelming pain. Interestingly enough, I actually told my doctor that I felt as if there was fluid in my leg & upon doing my own research, I discovered that cellulitis is actually stagnant fluid that settles in the lower limbs – something I was never medically informed of.

Where, exactly, it hurts depends on what position my leg is in. When I put my leg up, there is a considerable difference in the size of my calves – something my primary care physician, and the walk-in physician I saw a day later, on 10/22, due to the pain becoming unbearable, fail to recognize.

On 10/21, my primary care physician spoke with infectious disease & ordered an MRI of my LEFT foot, which is not yet authorized by my insurance.

On 10/22, a walk-in physician requested an x-ray of my RIGHT ankle & an ultrasound of my RIGHT leg. Ultrasound confirmed no blood clots in my right leg. The results of my right ankle’s x-ray remain unknown (he was actually concerned about a fracture in my right ankle & completely ignored the probability of cellulitis).

I ended up calling infectious disease today on my own, who informed me that it is very odd that the hospital did not have an infectious disease specialist evaluate me while I was hospitalized nor did they request a follow up with a specialist after I was discharged. There were actually very few notes about cellulitis despite my hospitalization and despite the discharge packets that I have that mention it time and time again.

I am feeling very defeated & I am in a lot of pain. I will not take narcotics due to my past drug use. I am currently taking a pain medication called Toradol, which dulls the pain minimally.

Anyone else have experience with this? I feel extremely alone.

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10 Replies

  • Posted

    Hi brebarr,

    First of all I have to correct you about something, cellulitis is not fluid collecting in your extremities but you're on the right track...... that is actually what lymphedema is and lymphedema is exactly what it sounds like you have. However, let me be very clear I cannot diagnose you because I am NOT a doctor but I have a lot of experience when it comes to cellulitis and lymphedema because I have it! Cellulitis is an inflammation of the cells meaning skin. Ora group of cells which is the same thing as skin. Lymphedema occurs when the fluid does not drain properly and gets backed up in the our lymphatic system. The main drainage area is in our growing area so it will directly affect your legs first of all. The first thing that usually happens is swelling in the foot or ankle and it will usually slowly work its way up your leg. My leg got about three times the size of a normal leg and at that point the fluid simply had nowhere to go so it came out my skin, the skin on my leg. Also the skin is so tight that it breaks and this causes horrible wounds and of course they cannot heal because of all the swelling that's going on in your leg. Now you have been very detailed and I appreciate that because it really helps whenever you're trying to ask for help but you dont put in all the information that you can. A lot of people don't do that so thank you for that. Having said that, you also have a lot of other things that have been going on with you that haven't help your situation very much.

    But the worst injustice of it all is that it doesn't sound like the people at your hospital have any idea about lymphedema. And what I have found is that that is very common, meaning there are so few people that specialize in this disease. A lot of doctors just don't know very much about it and so therefore they don't know how to treat it and they don't recognize it when they see it and it is misdiagnosed all the time. I myself was misdiagnosed as well until just recently when I finally went to a hospital that had a whole department devoted to lymphedema and I am finally getting the help I so badly need it need after 5 years of carrying around this horrible disgusting weeping heavy appendage. I hated my legs so much I would rather have had it cut off. And recently the hospital that I had been dealing with for about 4 years told me there was nothing more they could do for me and that really blew my mind and at that point I honestly didn't want to live anymore. But then I had a wound turn black and I went to a private hospital that's closer to my house and my whole world changed. At this point I knew I had lymphedema but nobody was treating me properly for it and this hospital knew exactly what to do and almost overnight they wrapped my leg in such a way that it went down overnight. I was in the hospital 10 days because I had to do the IV antibiotics, very strong and I have a lot of education about lymphedema and what I need to do for it and how it drains and works. I have a little medical background anyway Thank God so that's helpful for me but it could be an awful lot to understand for somebody who really doesn't have any medical background. I'm typing this to you on a new tablet and for some reason it's splitting my words in half at the end of a sentence. I hope it won't read that way once I send it but if it does I hope you can put the words together and I will have to find where to adjust that...I think its called wrapping the words isn't it? Lol....let me know if this helps you or makes sense...or if it doesn't. Ladyjack51

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    • Posted

      Thank you so much for your reply & for the correction on what I thought/said cellultiis is. I really appreciate you also sharing your feelings & how difficult it was for you emotionally because it helps me not feel so alone. I see an infectious disease specialist on the 6th (soonest they could get me in). I saw another (urgent care) doctor a few days ago because the pain got so overwhelming & she said she thought I have nerve damage that is causing my leg to be in pain when it's really not...not sure about that, but it could be true since the infection started in my left foot & it now "feels like" it's in my right foot & leg, although when I went to the ER the second time, my reasoning for that was because it had clearly spread to my right foot, which is probably what caused the hospitilization from 10/7-10/11. It has been really painful in my toes lately. I constantly feel like there is going to be puss coming out of them anytime now, but I'm on Cephalexin & have been since 10/11 so I think that is what is keeping it moderately under control. I read some past threads & got the compression stocking idea and have been wearing very tight socks that go all the way up my calf & that actually helps a lot!

      Thanks again!

      Bre

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    • Posted

      If you are getting pain from nerve damage then there are non-painkiller options, like amitriptyline which is an anti-depressant but it has an off-label use for nerve pain (it is given to amputees and those with neuralgia, I'm in the latter group and it is remarkably effective, despite my initial scepticism). So perhaps push for something like that if this is what they are suggesting is the cause of the pain.
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  • Posted

    I had to make a quick correction the main part of the lymphatic system where are the most drainage the cars is in the groin area...not growing area. Sorry And the fluid pools in your legs and doesn't drain up and out properly....
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  • Posted

    That all sounds horrendous but don't worry you aren't alone - this forum is full of people who've gone through somethig similar. I suppose the problem is that there is so much going on.

    To start let me clarify this:

    "upon doing my own research, I discovered that cellulitis is actually stagnant fluid that settles in the lower limbs – something I was never medically informed of."

    Cellulitis is where you get an infection under your skin. It can be caused by lymphedema (which is fluid retention) but could be caused by an insect bite or a scratch or pretty much anything that breaks the skin (I've had it once through eczema and the other times are still a mystery). It could be you had lymphedema which started this problem or it might be from some other cause. If the former, then there are lots of people on here that have that prolem and can offer further advice (like compression stockings and keeping the limb raised), if the latter then you'll probably need to get better and then figure it out and what you can do about it (as you were an IV drug user did you inject between the toes?).

    On the inection itself, it doesn't sound like you've been given IV antiobiotics long enough. Mine wasn't as extensive as yours was but I was kept in longer and only let out when they could see it was pretty much gone. I see they've done scans to make sure there aren't other problems, but have they taken bood cultures or done a skin biopsy to find out what the infection is? If not push for more of those tests and try and get back on IV antibiotics.

    On the pain relief front, it sounds difficult because it sounds like you'd want to avoid anything like codeine or stronger. Paracetomol might help take the edge off.

    Good luck. It will get better.

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    • Posted

      Thank you so much for your reply & for correcting & explaining the cellulitis/lympedema confusion. How do I know if I have lympedema? Is there a test I can get? A blood culture?

      They did do a blood culture to see if it was MRSA since I had MRSA in the past (about 5 years ago now) and the MRSA test was negative, although I'm wondering how accurate that is since when this infection started I got these little puss filled "zit looking blemishes" on my left leg (where the infection started - in my left foot) and I got the same blemishes 5 years ago when I had MRSA. I apologize I forgot to include that in my first post. I have been keeping my leg raised & wearing a tight sock that goes all the way up my calf on my right leg as much as possible, as I learned from reading some of the past posts here.

      & to answer your question, interestingly enough, I have never shot up in my feet or my legs. I have shot up in the vein on my ankle but not recently (not during this last relapse). 

      I am on Toradol for pain management. It dulls the burning pain but does not take away the tingling pain. I have not had a skin biopsy. Can I just request to be hospitilized again & put back on IV antibiotics? The hospital just does not seem concerned enough. They just want to put me on pain medication & send me home.

      As I said in my reply to ladyjack, I saw an urgent care doctor last week & she said she thinks I have nerve damage that is causing me to "think" I am in pain when I am really not. & as I forgot to mention in my reply to ladyjack, she referred me to see a pain specialist. UGH. 

      Thanks again.

      Bre

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    • Posted

      Could it be that the infection got in through a break in the skin cause by those blemishes or did they occur after the infection started? At this stage, you'll want to focus on sorting out the remaining symptoms, but it is a good idea to try and figure out what causes it as you can then work to head it off next time. If there is a chance that it is getting in from outside through a break in the skin then you ould look into getting some anti-bacterial soap (I have a prescription for Dermol 500). As your leg sounds to still be in a bit of a state it could be an idea to start now - you don't want it to happen again before you've got over the last outbreak.

      As I mentioned in my other reply to your recent comment - when you see the pain specialist and they say the pain is from nerve damage then ask about something like amitriptyline if they don't suggest it themselves. If it is nerve damage then this could be a big help.

      And well done on kicking the habit. A few guys I know from my local managed it but some of the others never did. That in itself is something you should be proud of and everything else is just fixing the aftereffcts of the cellulitis. It might be a bit of a grind and it feels hopeless at the moment, but you will get better. And if you can stay clean and get healthy then you stand a good chance of avoiding this again or at least not suffering so badly from it next time.

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    • Posted

      Thanks for your reply.

      No, the blemishes occured after the infection started in my foot. I remember when the infection started VERY well, before the swelling even started because it began with burning pain. As it progressed in my foot, I began to get these blemishes near my knee/on my shin. I think  I got the infection from taking a shower after a woman who had an infection on her face that looked like some kind of flesh eating infection. I think perhaps she had cellultiis on her face and when I took a shower after her, it somehow got into my left foot (doesn't make much sense since the only scabbed wound I had was on the top of my right foot)...that's the only explaination I can come up with.

      Pain specialist can't get me in until March...I left a message with my doctor to see if she could refer me to one that could get me in sooner. I also made an appt with her this Weds to see if we could change something. I am already taking Lexapro & Gabapentin for anxiety - I have a referall to a psychiatirst that I have been playing phone tag with for about 3 days now.

      Thank you so much, it's such a blessing to be clean now. Not saying that it's easy...in ANY way, shape or form...but it is most certainly worth it. Thanks again that meant a lot to me. 

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    • Posted

      A quick Google suggests that cellulitis is quite common with IV drug use (so staying clean is a good thing) but I suspect this is mostly through infections getting in through sites of injections. However, it is possible that it could also cause issues with circulation, which is one of the "internal" causes for cellulitis (and this problems can be caused by things like lymphedema or diabetes) or your drug use has weakened your immune system.

      http://www.medscape.com/viewarticle/468419_3

      http://alcoholrehab.com/drug-addiction/drugs-alcohol-immune-system/

      If the doctor who suggested you had nerve damage has put it on record, then your doctor might be able to sort out something for that. The complication is your anxiety medication, but you won't know until you try (I was worried about side effects but had none which was a relief) and it could be the antidepressant effect will lessen your need to take them.

      Good luck.

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    • Posted

      You are so sweet to do a Google search on it for me. I am doing a Google search on it myself now & learning so much. Thank you!
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