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Arm pain

Arm pain

Posted by Hanifa on Jul 13, 2020 6:27 pm

Hello,
I had a left breast masectomy march 2019, then started my reconstruction in May 2019 by getting an expander. Jan 2020 the implant was put in. I am on tamoxifen for 5yrs.
since the first surgery I have been having pain in my left arm. It is quite week and painful. I get slight swelling on wrist. I have been wearing an arm sleeve and trying to do stretches and exercises to strengthen my arm.
the  pain is strong at times. Feels like it is being pulled from the inside. Sleeping is very difficult.  I cant put any pressure on my left arm. I position too many pillows in my bed and on my recliner..
I take tylenol, my husband massages my arm and shoulder regularly. But there is no change. Seems the pain goes worse. I am really frustrated,  I need help.  My oncologist says it will take time.
please advise.
 

Re: Arm pain

Posted by Essjay on Jul 13, 2020 7:12 pm

Hanifa‍ Im sorry you are suffering with pain still. Have you asked your surgeon for a referral to a lymphedema specialist?

I am sure the massage your husband is doing is doing no harm, but the lymphedema specialists use techniques that help break down scar tissue, cording, and deal with any lymphedema. I didn’t have lymphedema but I did have cording and scar tissue that troubled me. Some specialist massage helped and I was taught to do this myself. Plus I have some particular stretches to stop things getting too tight which leads to soreness.

How does it feel today?

Essjay
 
Triple Negative Breast Cancer survivor since July 2018

Re: Arm pain

Posted by MCoaster on Jul 13, 2020 9:31 pm

Hanifa‍    Sorry to hear about your continuing pain.   I certainly agree with Essjay‍ that it could be associated with lymph drainage.   Very good to talk to a doctor soon though as it could possibly be something else.  

Lymphedema is a subject top of my mind at the moment and ashcon‍ and I have been exchanging posts.   She is very knowledgeable on the issue.   From my personal experience knowing how to massage correctly is important as you want to drain in the right direction.  If you have not seen them yet there are some very good videos but make sure they are from a reputable source.  There are videos which encourage draining that you can exercise along with.  There are also registered massage therapist  who are trained in lymph drainage.   It is my understanding that the exercises we are given post surgery are to maintain range of motion but also to help with lymph drainage.   The lymphatic system is very important.

I would certainly contact your doctor ASAP asking for a definite diagnosis and  perhaps stress how much the pain is impacting your life.

Good luck.

Margaret

Re: Arm pain

Posted by Hanifa on Jul 13, 2020 10:34 pm

Hello Ladies, thank you so much for the advice. It is very help full.
I did see a lymphatic therapist. He did advise me to get the specialized massage treatments. I did call around , the only thing that stopped me was the cost. They are quite pricey for each treatment and I am  living on limited funds. I did see some videos online that we are following.
But I guess it is not helpng. I may just have to bite my tongue and go ahead and book an appointment.
In your opinion,  how many treatments do you think I would need to see some kind of difference?
also do you know any affordable therapists in the Durham region?

Re: Arm pain

Posted by MCoaster on Jul 13, 2020 11:54 pm

Hanifa‍   Glad to hear that you have a diagnosis and know where to start.  I am in BC in a fairly rural area so I don’t know the ON system.  Over here they sometimes do the first visit free or reduced. The therapist I see charges $70 an hour but she always spends extra time on me and teaches me the basics and theory so I am able to gradually learning to work on myself.   I have found Lymphedema Association of Ontario web address which is lymphontario.ca.  It covers the whole province but hopefully there is one near you.  They will tell you how much it is.   Does OHIP pick up some of the cost?   Sometimes if you ask therapists will let a husband etc observe so they can help their wife between visits.  Initially I was in such a mess that I spent $140 for 2 visits a week for 2 weeks.   I now go about every 10 days.    I too do not have deep pockets but it was definitely worth it as I learnt the principles of how to do it.  I think the overheads for most professions working on people cost them a lot for insurance and offices.  The computer is a good resource because once you understand how the lymphatic system works it helps to do the massage correctly.

Hopes this helps and that your pain is reduced.

Hugs.

MCoaster


 

Re: Arm pain

Posted by ashcon on Jul 14, 2020 11:00 am

Hi Hanifa‍ 
Essjay‍ and MCoaster‍ have given you some great tips and recommendations.  Especially about getting properly diagnosed and treated, if it is indeed lymphedema.
You mentioned wearing a sleeve, and getting swelling in your wrist?  Is it possible that the sleeve is too tight or the compression grade is too high?  The recent heat wave we've had doesn't help things either!

I, too, am in Ontario. Initially I saw the Lymphedema Specialist that was based out of my cancer centre where I got treatment - so OHIP covered the cost. (Then she left and was not replaced 😞 causing me to go out and find my own new therapist)
Do you know if your cancer centre has a Lymphedema Specialist on site?  This may be a way you could get around having to pay for treatments.
If not, then I would say (yes) it's worth paying for at least a few sessions, if you can afford them. 

I saw my new therapist about 6 times. Each session cost about $70, but my private insurance covered about 90% of that. (Do you have private insurance?)
She was great. She showed me how to do the massage myself, she even gave me some "kin" tape and instructions on how to "tape" my skin to improve lymphatic flow, so I am now pretty self-sufficient in managing both the lymphatic flow and the pain.

Like you, the pain I felt was quite significant, along with the feeling of being so "weak" in the affected arm. There was only one sleeping position that worked for me.  Even sitting in one position for too long was uncomfortable. I couldn't type on the computer for more than 15mins at a time.. So I get what you are going through. But now, about 2 years after my second surgery, it is finally not as bad. 
I hope that time is a healer for you as well.

MCoaster mentioned Lymphedema Association of Ontario.  Great resources are there including a directory of CDT therapists (link on right side of page).   If you can afford it, I would recommend going to a certified therapist, at least initially.  Many regular massage therapists say they are trained in the lymphatic system, but if you need to be properly measured or assessed for new or replacement compression sleeves, gloves, or gauntlets, they are the only ones certified to do so.

You've come this far to beat this disease. Don't let this bump in the road sideline you from living the rest (and best) of your life.
---- "Nothing ever becomes real till it is experienced." ----

Re: Arm pain

Posted by Hanifa on Jul 14, 2020 11:56 am

Ty so much for the great advice!. 
I will try to book an appointment .
Keep you posted!

Re: Arm pain

Posted by MCoaster on Jul 14, 2020 12:20 pm

Hanifa‍     I am glad that you are getting some good information and that ashcon‍ provided the ON info.

FYI.    If you would like sure that someone sees your post here and why their is blue this is what to do.  First type @ and then, with no space, start to type their name.  A blue box will appear and when you see the person’s name click on it and their name appear in blue in the post.  They will then receive a notification.  Also if someone hits “like”  for your post or if you do the same with someone else’ notification will be sent.   I have “liked” one of your posts.

Healing thoughts

Margaret

Re: Arm pain

Posted by Lacey_adminCCS on Jul 15, 2020 10:33 am

Hanifa‍ - Such an important topic thanks for posting. You have received some great info above.

Have you checked with the hospital where you received treatment to see if they have a therapist on site? I would try that first. 

Also our Cancer Information Helpline might be able to help you find services near you. Give them a call at 1-888-939-3333. They are so knowledgeable!

I hope you are feeling better soon,
Lacey