Truncal LE and more:)

sweeney22

Hi-

I have truncal LE and it has gotten worse over the last month or so. I see the surgeons office tomorrow. I have already done PT for frozen shoulder and LE. That ended early June. This LE is giving me a fit! I feel the heaviness and dull ache for sure. But for some reason it is triggering this zing tickle like feeling in my chest and sometimes I cough uncontrollably. It is awful! Now I have burning pain. I had somewhat of a coughing issue prior to be dx w BC. It was more a reflux/sinus issue and I got that under control after seeing a naturopathic doc. But in March I was dealing with frozen shoulder issues and early LE (didnt know that part) and I was shoveling and must have done something bc all the symptoms I mentioned above started. So i finally went to PT and to the LE specialist.

I read that the truncal can exacerbate nerve issues. My PC doc thinks I may have a vagus nerve issue- my endocrinologist says it may be lymphatic! All I know is that if I use my shoulders and chest too much I get symptoms and if the LE is bad I get Symptoms! I am in PT now in a specialty caused counterstrain. It helps but sometimes makes me have a coughing flare up. I had an MRI - that was clear. (had petscan last june- clear). So I see a neurologist soon to see what her opinion is.  I changed from bras that I got from the BC fitter to genie camis and a couple other types of shapewear. That has helped some. I also wear a sleeve. I also have a wedge that is made for the underarm area and i sleep with that for increased compression. I have done the massage and that helps some. I have this pocket of fluid up under the back of my arm that is bad. 

Today I have that underarm pain that I had after surgery. Its burning under my arm and on my back! What is up? I thought nearly a year out this would be easier! This LE makes me feel crummy somedays esp when it bothers my chest area. If I get the coughing I feel super icky and sometimes have to take a valium to stop it. My PC doc seemed to not want to prescribe anything for me. Its fine bc I hate meds of any sort. Even valium (but it works). I am using EPO now and R lipoic Acid to hopefully get some nerve pain relief (and maybe control what triggers the cough). I know I have a few things going on probably but I know the LE is exacerbating it all. I love to workout and ride horses and have been very limited bc of these issues. I hope the surgeons office has some ideas. They mentioned a pump on the phone! I think they are like 10K! Even with insurance the copay would be huge..so I am not sure we can afford a pump. This LE is worse than the cancer surgery and treatments(i did not do chemo). I get bummed out alot bc I feel crummy. Undiagnosed shingles was mentioned to me as well. I just want it to go away!  any ideas? anyone else w truncal LE?

Jennie93

sweeney, I have truncal LE as well, but I don't know the answers to your questions. Hopefully someone will come along soon with some ideas. Honestly nothing I've tried has helped mine much, if any.  

Pure

HI There, 

I feel like I could have written your post:( I am working with an LE therapist twice a week but I am beginning to think that the fluid is sitting on a nerve and causing the pain. If the swelling goes up I get blood curling pain. I would rather die than live like this. Currently I just take advil for my pain. I am going to a doctor tomorrow and perhaps he can give me something specific for nerve pain. 

I am so sorry your going through this:(( Are you seeing a LE specialist?

coraleliz

sweeney-you mentioned a wedge for the underarm area. Could you elaborate? My truncal edema comes & goes. I compress when I have it.