Allodynia

[LisaJF]

I was in the hospital for three days last week and was diagnosed of having "Allodynia" of my left breast nipple.  This pain started fifteen days after my stereotactic biopsy.  Nothing could touch my nipple, so I wore a plastic medicine cup over it with tape (really looked funny).  I suffered through five days of hell before I went to the emergency room and asked for pain relief. I could not take it anymore.  I was on Neurotin (normally I take this when my left arm flares with with a burning sensation down the tricep, ulnar and ring/pinky finger), Advil 800mg every 6 hours and I would cut out lidoderm patches with a hole in the center to put over my breast and still no relief.

They gave me narcotic via IV and mouth and it did help some extent, but not completely.  

They sent me home stating that I didn't belong in the hospital where it is meant to admit patients with acute care issues or detrimentally ill.  (Little did the resident know I am a medical professional myself and was flabbergasted when I heard those words uttered from his mouth).

They sent me home without prescribing me pain medication, treating me as if I was drug seeking.  Days and days later, I was still in pain.  Even now I still can't touch it completely without it hurting me.

I was wondering if anyone has experienced this sensation?

I think this is as bad or worse (due to the pain at a small specific area) as trigeminal neuralgia and post thoracic pain syndrome I suffered in the past.


I apologize if I have not been contributing to posts lately.  I've been out of sorts.

Good news though (as I predicted), the biopsy came out benign papillomas.

Lisa

[mrsjill]

I have had allodynia for several years.  I just found out today what it was called.  I have it all over my body.  I use fentyal patch and neurantin.

I have been to the hospital many times.  The time I went for the severe pain, I refused to leave without help.  I said the pain was so bad I wanted to cut off my leg. I wasn't going to but they would have sent me home with a small amount of meds as a drug seeker.   They admitted me to the psych ward with all of the other severe pain patients.  The hospitals need to know it is immediate.  So be specific and if you must, go over their heads.

[caroline405]

I have had allodynia on one side of my lower back for 8 years. Neurologists and pain specialists have been unable to cure it. The final excuse is that nerves do not follow a precise pattern. As a result, I can't wear loose clothes and can't exercise because movement or sweating exacerbates the rubbing and, therefore, pain. In the 8 years of have gained 75 pounds and an enormous belly, but the pain is just as bad. my general health has suffer but I have given up.

[LisaJF]

Aww thanks Kelly for your compassion.  I too, am sorry that I'm going through this.  No its not as bad as it was, but there are moments when it will get back to where it was before then go away in 10 minutes.  It's always there now but not at the caliber it was (which I am grateful).

Thanks for the birthday wishes!  It was a shame I spent it flat on my back in pain and tears!

I hope all is going well for you (as much as it can be?)  How's work?

<3 Lisa

[anon07072023]

I'm sorry you're going thru this. Is any medicine helping you now?  It sounds like it's not as bad now as it was? I hope it's starting to go away.  Sometimes I wonder about the treatment people are receiving by medical professionals....they're not so professional a lot of times, or compassionate.

Happy Belated Birthday !!!

Hugs,
Kelly

[LisaJF]

Thank you everyone for your unfailing support and concern.

There was so much more B$ to this hospital visit, but I am still too angry to even get into it..

I have thought that the left breast stereotactic biopsy elicited this nerve issue, but what puzzles me is that the pain did not start until 15 days later (had the biopsy on Dec 22) and the pain started on my birthday Jan 7th.  As odd as it sounds, I was looking forward to the lumpectomy on Jan 13th because the pain was so damn bad (actually 6 days of excruciating pain), so I could be put out of my misery for the little amount of time the surgeon needed to take out the nodule.  Pathetic right? I even begged the surgeon to cut the left nipple off.  He wouldn't though. LOL

The radiologist MD who performed the biopsy stated she felt that this nipple pain had nothing to do with the biopsy (which the biopsy site was distal (below) the originating pain).  The surgeon agreed with this too.  I'm still not sure about that because I never had anything like this before and only after this biopsy, this started.  Odd huh?

Although that night after my same day surgery, I went to the ER because it just got progressively worse than it was preop after the sedation and lidocaine wore off.

I wouldn't wish this upon my worst enemy.  

For those who do not know what Allodynia is:

It is pain caused by stimuli that is not considered painful such as movement (walking bounced my boobs, therefore nipple friction against shirt), or the lightest of touch.  Which I believe my Allodynia was in the mechanical, static allodynia category.  


Thanks for the well wishes, gentle hugs and love <3

Lisa

[sllowe]

No wonder you've been MIA!

No apologies necessary! You were dismissed, and treated badly, you don't deserve this. I'm so sorry. I have no experience to lend w/this issue. Just support and cyber hugs.

Thinking of you, and wishing I could make it go away :(

[drsdonthelp]

I have wondered where you were?? I may not be on the MS forum much, but I try to check every now and then to see what everyone is up too.

I am sorry that you were in the hospital. I have had a similar problem before and of course, I never mentioned it or thought that I should (I was young and brushed things under the rug all the time) There was a time around 10 or so years ago that I had a problem with my shirt, or bra feeling like if it moved across that area (nipple) it would hurt like crazy!! Extremely sensitive and painful. I just thought it was Me and my weird things that always happened! LOL Thanks for sharing !!  
Have you gotten a dx yet? I don't know if I missed it or not.

Love you and hope you are feeling better!!
Pam:)

[heartfelt77]

Take care Lisa rest and get well soon...   Before leaving the hospital I would have left him in on your little secret.  That would have really thrown him off.... Lol.  I wondered where you were.  I hope you can relax this week and don't have to go through this again.

Take care.....   Nice to hear from you.  Glad your ok.
Misty

[rendean]

Hey Lisa,
Yes I have suffered with allodynia  ( pain from a stimulus that doesn't cause pain, i.e. clothing, the wind blowing on the affected part, etc.) with my Chronic Regional Pain Syndrome in my foot. It was horrendous! I had it for 2.5 months.

I think you are doing the right thing by desensitizing the area even that it hurts like no other  pain, TN being the exception and that also cause allodynia in some people.

I hope the pain starts to abate and you feel better soon!

Gentle hugs,
Ren