I have an update to share - I went to my Physical Medicine Dr last Friday - We discussed my increasing symptoms of:
· Sleeping difficult – wake every 1 – 1 ½ - 2 hours from pain and discomfort – I dream about the pain, uncomfortable feelings and that my right hand no longer is useful - so, not only is it my day to day - but also continues into my nights.
· Ambien helps the sleeping – without it, there would be no rest - she (Dr) did say that I should request my Primary Care Dr to change it to the CR type of Ambien which is more time released, and it may help me rest longer periods between waking.
· I miss at least one day a week from driving to work and getting up early when I had a bad night – I then work some from home, so it is not really counted as sick day or missed day. I am fortunate in my line of work to be able to work remotely if necessary. Still - it is hard and way more tiring than before the symptoms progressed.
· Occasional headaches 7 – 14 times per week – strong pain in front side of forehead – nauseating for minutes – off and on over period of days
· Right side neck/jaw pain and jaw weakness for chewing - this is weird, as my jaw gets so tired, I can't chew but for a few moments. Then stop chewing and rest a few longer moments, and start again. Because of this, I have been choosing softer foods.
· Increased left hand pain – finger nails & fingers & palm/thumb
· Increased left forearm pain, top and bottom
· Increased left upper arm pain in front bicep
· Increased left side of chest near armpit stings/burns
· Increased left hand weakness – dropping more and small tasks more difficult - I almost took a co-worker's eye out this week, when the little coffee creamer cup went flying out of my hand, up in the air behind me, just as the guy walked into the break room! Oops!
· Left hand coordination getting worse
· Increased right hand/fingers/arm very itchy
· Right hand sensitivity greater –and again not being able to stand the right side to touch anything - not even allow it to rest on my leg while sitting - I have to turn it upwards so the back of my hand rests on my leg.
· Right hand weaker - and markedly thinner, muscle tone almost non existent - bones protrude, skin sunken in around them - bruising easily occurs - forefinger will sometimes not move at my will.
· Right fingers move on their own, lift up, bend, twitch etc. When they do this, I push them down or straighten, but as soon as I relax, they go right back to moving on their own.
· Right forefinger always pulls up like it’s always pointing
· Right fingers feel like they are quickly vibrating inside, but not outwardly moving - Left fingers started doing the same.
· Right hand – little and ring fingers always feel like they are bent under even when straight
· Right fingers will often twitch and jump uncontrollably
· Right hand increased pain in fingers, finger nails, and large thumb joint
· Right forearm strong sharp and burning pain, top and bottom
· Right upper arm bicep and front shoulder sharp and burning pain
· Right upper arm above elbow nerve/muscle constantly jumping/twitching
· Right back shoulder nerve/muscle jumping/twitching
· Right body side between ribs nerve/muscle constantly jumping/twitching
· Right side of back near spine nerve/muscle constantly jumping/twitching
· Right side of spine between shoulder blades area burns
· The nerve/muscle jumping/twitching in hands/arm/back/side makes me feel exhausted – it just doesn’t stop – 24 hrs a day, something, or all are moving - its not painful when the nerve/muscle jumps/twitches, just annoying and exhausting.
· Not sure what to do with the right arm anymore, how to hold it, where to rest it – hate the feeling when my hand touches anything
· Toes more painful on top of nails and toe tips
· Toes are numb tingly from above foot joint – stronger tingling/pain than lower leg symptoms
· Legs below knees tingly through the feet – constant
· Legs- restless legs during the day and more so at night
· Top of feet often intense pain
· Bottom of feet get burning hot – yet to the touch they are cool. This is throughout the day and night
· Right knee misfires a lot lately.... I will be walking or standing, and at anytime my right knee will buckle.
· I am riding a recumbent bike 5 miles – 32/35 minutes, on level one, 4-5 days per week – but still feel so weak at the beginning in upper legs and exhausted at the end.
· Stopped Aromasin for one month to see if it was adding to my pain and discomfort – no improvement or change noticed – I only have 9 months to go on it to complete 5 yrs, so I started taking it again on 2/14. I will finish the 5 year cycle on this drug for my Breast Cancer.
I asked her what she thought about acupuncture and it possibly helping with the stinging/burning pain - she was not sure, as she does not perform that. However, she has a colleague that is an MD and performs acupuncture. She said she'll reach out to her and get some feedback on whether she thinks it may help, or possibly hinder and cause the nerves more distress and irritability. Haven't gotten a response on that question as of this writing.
I also said that since my symptoms are getting worse, I wasn't sure if the low-dose Cymbalta was still working. She said that the dosage can still be increased and be considered low-dose for nerve pain treatment as opposed to depression doses. But, she said to see if it is working at all, stop taking it for a week. Within a week's time I would be able to tell by the way I feel regarding pain. I stopped taking it on Saturday, and by Tuesday I could definitely tell it must have been helping to take the edge off of the pain and helped with the feeling of raw electrical wires running through my limbs... I also noticed increased sensitivity to noise causing me to feel like my insides were startled by anything remotely loud. I started back on the Cymbalta today - Thursday - in hopes it'll go back to taking that edge off of some of the symptoms.
Good news to share - I will participate in two separate studies relating to RIBP - one with Dr Dorsey, at the Univ of Maryland. The other with Dr Radina, at the Miami Univ of Ohio. I am looking forward to helping those who have a desire to help us survive survivorship!
Hope all of you are doing well - stay strong - survive survivorship!