Waiting for biopsy - where did the joint pain come from?

[Dinaxxxx]

Hello ladies,

Thank you so much for taking the time to share your experiences.  I am waiting on results of my second biopsy to confirm the GM diagnosis.  I have had 4 abscesses and a huge portion of my breast has been hard as a rock with inflammation for the past 2 months.  

Initially, I thought I had mastitis.  I stopped nursing my second child 4 years ago.  I didn't respond to the first antibiotic, so they tried a different antibiotic and then scheduled an ultrasound when my symptoms didn't resolve.  They found a cyst and it was drained by a breast surgeon (pus came out, so they cultured it - it was sterile).  More abscesses developed and the cycle repeated of ultrasounds and breast surgeon visits to drain them.  The first biopsy did not show cancer (I was worried about IBC).  They repeated the biopsy a few days ago.  

The infectious disease Dr. and the Breast Surgeon both think this is GM and they feel we should go forward with that dx, regardless of the biopsy (based on the symptoms).  I saw a naturopath and she has me on an anti-inflammation diet, along with mega dose probiotics, fish oil, milled flax seed, turmeric, mushroom capsules and liver detox.  I am also low in vitamin D, so I am taking 4000 units of vitamin D.  I have low iron, but I am not currently taking an iron supplement.  

I started having joint pain ( feet, ankles, knees, lower legs, fingers, wrist, forearms) a few days ago.  It is really bad.  I emailed the surgeon and she said that GM is not generally a systemic issue, so I should check with my primary care provider to address the joint pain.  This seems short sided to me.  

I am awaiting a referral to a rheumatologist, but I don't want to take steroids or any of the other medications.  It seems like they are just shooting in the dark, and I don't want to risk the side effects.  

How many of you have also had new joint pain with GM.  I did not have this before.  800 mg ibuprofen seems to help, but I don't want to take that for an extended period of time...

What have you done regarding time off from work?  I have been on short term disability and I wonder how long other women have been off from work?  There is no way I could work right now.  With all of the Dr appts and the pain/abscesses... no way!

Thanks,
Dina

[Dinaxxxx]

I am moving forward with a bilateral mastectomy.  My breast has gotten so much worse.  My surgery is in two weeks and I am full of anxiety!!!   I am ready to put this behind me.  I tried acupuncture and traditional Chinese medicine for 3 months and it helped with the joint pain, but the breast continued to get more and more diseased.  

[Laurel_Wessie]

IGM and joint pain? Yes.

I really believe it is the IGM because I've never had this kind of pain in my joints before being diagnosed with IGM or when on antibiotics. Also, my doctor did a rheumatoid arthritis blood test and it can back negative. I'm 57 and have aches and pains sometimes but this is much, much different.

I have also lost a fair amount of hair. I asked my doctor about that and she said fighting infection could absolutely cause hair loss. Argh...

I didn't want to do steroids either and my doctor agreed. I am on the mend though, it's taken time. For me it'll be a year in November. Hopefully you are feeling better too.

[DD420]

My joint pain was a side effect from the antibiotics.  Are you or did you take Levaquin,  Avelox, or Cipro? They cause serious physical side effects (I learned the hard way).

[ktbh8]

I just started having jaw, shoulder, neck pain - after being diagnosed with IGM about 6 months ago.  The jaw pain is horrible, and I went on an emergency visit to the dentist, no problems there.  he felt it might be related and told me to follow up with my primary care physician.  I asked my breast surgeon to please put me out on short term, but she wouldn't agree to it, despite the pain, an abcess that has been draining for weeks, and multiple appointments.  It is really frustrating and I  know it is affecting my job.  With three kids, a separated husband, a full time job makes it even harder!