Okay, so we all know that laughing and talking are painful to those who have it 'round the clock. The bottom line with this condition is figuring out what keeps the inflammation down. You have to be your own detective and DON'T GIVE UP! So here's my challenge for you:
No talking unless absolutely necessary for 2 weeks. This means turning off your phone...when someone calls you, just e-mail back (I sent out a mass e-mail to my loved one in advance, they were very supportive...I'm doing this long term until I'm healed...nuts, huh? But I'm starting to feel a little better doing this combined with my regimen...yay!)....keep track of your pain on a pain scale of 1-10 each day and see if you can't get that pain to come down a notch.
This also eliminates stress....but you really have to commit to it. And add on to that only doing activities that are costo friendly...for me...that's walking only. Up for it? I know it's crazy, but so is this ridiculous condition. =)
Summer Retreat
4 years ago
hi lucy- by chance i just found your blog after months of trying to find a connection between talking and the chest pain i have been experiencing. im so happy!! happy, as in releived that i am not going crazy. the docs are all stumped. i have been my own doctor during this crazy time in my life. as it turns out there is vocal cord damage, and talking is difficult for me- but it does make the costo pain unbearable. have been on vocal restriction for weeks, which is helpful for the costo, but not for the cords. in order for the cords to heal i must use my voice and do some vocal therapy. i am a music teacher who relies on her voice for her livelihood- am on short term disability and hope to be back to work soon- i am going insane at home. like you, i am determined to heal. btw, my regimen includes chiropractic, phsical therapy, massage, vocal therapy, and lots of hot salt baths. for me the back pain is very severe- another riddle recently solved- didnt realize costo could cause that. in my case, this all began immediately following a case of bronchitis. i wish you well and will hold you in my thoughts as completely healed, and happy.
ReplyDeleteWow...thank you so much for sharing your story. I'm so sorry you are in so much pain. And your a music teacher? I love that! And I hate that you are struggling with costo when what you love to do most definitely is painful with costo. And the vocal damage you are dealing with on top of this. Wow. That's a lot. I'm so sorry.
ReplyDeleteOn a positive note, I'm SOOOO happy you found this blog, and that it in some way helped you, and you know what you have! That's wonderful, and diagnoses is a powerful tool to have on your way to healing.
And yes, the back pain is terrible! My medical massage therapist has nipped that in the bud, just something to try down the road, maybe?
Everything you are doing sounds awesome. You sound really proactive and determined, which is the best way to be with this condition.
I wish you the best, thank you for taking the time to share with me. I pray you find healing quickly so that you can go back to your music. And go back to it victoriously!
Lucy
PS- I just re-read your post and you are already doing massage, you ROCK!! Forgive me not catching that! (PS- I have my massage therapist let me lay of my side while she works on my back, then flip to laying on the other side- so I'm not laying on the stomach).
ReplyDeleteI'm always here to talk or listen!
Hugs to you,
Lucy
lucy! wow, thanks for responding so quickly :) i too am sorry for your pain. i am so grateful to have found your blog and have your story validate mine. you are right, having a diagnosis is so helpful for ones spirit. lucy, what you are doing here is wonderful- think of all the people you are helping! good for you. god bless you and your work.
ReplyDeleteYou sweet soul, thank you for that encouragement!!! Means sooo much to me!
ReplyDeleteHugs, prayers, healing, and a lifetime of music to you,
Lucy
hi lucy- i hope you had a 'good' day. today i started physical therapy, and i liked my therapist very much. he seemed very knowledgeable about costo, and gave me hope. wish me luck :) i am wondering about your talking issue, and what the docs are telling you, since i have run into nothing but brick walls with regards to that. if it werent for the vocal cord diagnosis, i would still be meeting with dumbfounded doctors. from what i know about costo, which is not very much, talking prollems usually are not part of the condition. what is your experience? have you known others who have had increased pain from talking?
ReplyDeletepeace to you.
Hi there,
ReplyDeleteGlad you had a positive experience with your therapist, that's awesome! Thanks for the update.
As far as the talking goes, my experience is that on really good days, it hurts less to talk and thus I'm a chatty Cathy. And on really bad days, I don't say a word b/c of the pain.
I have met a lot of folks who have more pain when talking. And several singers as well, who, unfortunately, notice it right off the bat. Since the pain increases with movement and and aggravation to the ribs, breathing can hurt and yet with more movement (with talking), it hurts more.
The only way I've been able to describe it to a doctor is to tell them that talking hurts just like broken ribs would hurt to cough.
Hugs to you my fellow music friend!
Lucy
lucy? did any one of your docs ever tell you the reason why our voice is affected by costo? i still have no idea what the reason for that is.... my theory: there is cartilage that conncects to the vocal cords. im thinking that cartilage got inflammed from the costal region. it spread there. what do you think?
ReplyDeletewell i went to work today and picked up long term disability forms. i would be crazy to go back to work in 2 weeks. as a music teacher. i am very sad. happening for a reason........
Hi there,
ReplyDeleteI'm sure it was really hard to pick up those forms today. Please keep me posted. My heart really goes out to you.
My own opinion is that it hurts to talk because it hurts to move the affected area, and when we breathe and talk, it irritates the area- like walking on a broken leg. My actual voice didn't hurt unless my throat was tight due to what I now know is food reaction. But my costo really use to hurt when talking. Does your throat hurt?
I SO know how you feel. I know it's really hard- I'll have you in my prayers tonight.
Many hugs to you,
Lucy
hi lucy. i just realized i didnt answer your question: no my throat does not hurt, it never did, even when i had the original upper respiratory infection that started it all. my testing continues... i got to see the results of the imaging and blood tests the rheumy took, although i have to wait til april 20 for our follow up consult. from what i could see, all normal, negative. i cant beleive having to wait so long between visits- i sure hope there isnt anything i need to know about! another thing- i realize i have never really gotten a costo diagnosis. i just imagined i did- it has been several times implied but never declared. i guess i beleive thats what it is- although i now reserve the possibility that there is an underlying condition causing it that needs to be discovered. possibly celiac. possibly something else.
ReplyDeleteive had a not so good week, but i asked for it. the muscle relaxers were doing great until i was feeling alittle too good and went and did some work in the garden. was doing really well until i picked up the rake. im still paying for it. i spent easter all by myself- just me and the cheesecake i baked for the family gathering i didnt make it to. glad cheesecakes freezes well! this one was a beaut. mango new york style cheesecake with an orange blossom creme anglaise. i hope its as good as the idea of it!
it looks like i will not be going back to work as i had hoped on april 21. it just doesnt seem realistic. i miss it sooo much! dont know how much longer i can go on without money. sorry to be such a buzzkill tonight lucy- guess im feeling alittle down about everything. i am definately going to ask to be tested for celiac- just as soon as my doc gets back from his easter vacay. youll never beleive what he wrote on my long term disa form as a diagnosis: chest wall pain, and laryngeal pain. laryngeal pain? i never said my throat hurts, ever. my chest hurts when i talk. ive been saying it that way for almost 6 months. it was the first thing i ever said to any doctor and remains the most important thing. why would he write laryngeal pain? i need to ask him that- maybe it translates to something i have no understanding of in doctor lingo. time for a new doc i think.
so how are you doing with your gf lifestyle? are you allowed popcorn? if theres one thing i eat too much of its popcorn. almost every night. it calls me from the cabinet. i think i eat too much sugar too, in all its forms. not a candy eater, but i do like things sweet. even my popcorn. i know- sugars bad stuff. might as well just kill me now!
hope you are well... love to you. your music friend,
Hey there my sweet music friend,
ReplyDeleteGlad your throat doesn't hurt. I'm so sorry you are going through this.
You are doing great and keeping digging. And you are right, most often there is an underlying reason for the costo. I know it's hard to wait while you are figuring out the reason for your pain.
I totally understand over doing it while on muscle relaxers! I have done the same thing when muscle relaxers seemed to be only thing that could help.
I'm sure not going back to work is know really hard. My heart goes out to you. I know you must really miss it! I know you are in a tough place in this journey, you hang in there, k? I know you will get to the joy of healing, it's just a matter of time.
I'm so happy that you are going to get tested for Celiac! Yay! Good stuff! Sounds like your doctor may not be so amazing...laryngeal pain!?!? Oh mercy. Sheesh.
I'm doing okay on GF. Not feeling amazing. But doing okay. Learning a lot. Your sweet to ask. I'm still not sure about popcorn...going to test that soon. I'm learning that my body is reacting to a lot more than gluten since it's been so damaged. But I know I'll finally figure it out one of these days. lol.
One day at a time...
Hugs to you,
Lucy
hiya luce~ its been awhile, sorry. i hope you are feeling well on your gf diet, and finding new ways to eat and be happy.
ReplyDeletei had an appt with a big throat doc (otolaryngologist) in philly. she came highly recomended to me by two music friends. well, she did a very uncomfortable test (and she did not have steady hands- boo!) to find that there is vocal cord paresis- only one of the cords, thankfully. so she interested in knowing the cause of the paresis- not sure if i was born with it, or perhaps the goiter in my neck pressing on it. so, next i go to a neurologist who will try to determine what the cause is. he will perform a nerve test on the nerve going to that cord, and then i will have an MRI with special attention to cranial nerve 10, with and without contrast (double boo!). she ordered enough labs for me to fill over 15 vials of blood, including one for maysthenia gravis. regarding the pain in the chest that i feel when i talk, she feels the paresis is innocent. she recomended that i see a rheumatologist (ha! already saw two) who can explain that phenomenon to me. i happen to have a follow up visit last tuesday with a rheumy who took tons of labs last month to rule out various forms of arthritis, including ankylosing spon (you may recall my telling you this). anyway i had the follow up with this rheumy who went over the labs with me, and very simply declared that it is all (voice prollem, and chest/back/rib pain) costochondritis/tietze that i got from the brochitis i had in october!!! this is the first doc to declare it. finally!!!! i high 5-ed him. he is so certain of it. i told him about the neurolgist and MRI and he said im doing it all for nothing- it will all come back normal. he recommended i do it anyway (of course), and to see the neuro first who may nix the MRI. really not looking forward to being injected with any contrast- thats badass w***. nope- uh-uh. not doing it. the only way i would consider it is if the neuro finds something highly suspicious. had my thyroid worked up and its all ok. the ultrasound came back normal. bloods, normal. the goiter is not even that big. most ppl dont even notice it.
anyhoo- i wanted to give you the latest. ive been religious about some things i could swear are working, and i would like to tell you about a new product. here is my daily regime:
blueberry solid extract
black elderberry capsules
noni juice
bromelain (taken on empty stomach-critical)
arnica montana(homeopathy- highest dose 30)
fish oil
new product= zyflamend. this is a combo of all well known anti-inflammatory herbs/products such as ginger, turmeric, holy basil... i took it 3 times, and had a headache 3 nights each time i took it. was great on my stomach, but not so sure it didnt give me those headaches. will skip today and see if i get a HA. this stuff is expensive ($33.00) but one can prolly find it online cheaper. its worth a look-see.
voltaren gel anti-inflammatory gel, topical)
flexeril (muscle relaxer)
the pain is now a 4-5 rather than a 9-10 and i can do more things better that i couldnt do at all before like open the dryer, open most doors, push food carts... i still opt to ride the go cart at target, but in general the pain has gotten much, much better.
the rheumy told me something i thought was interesting that i hadnt heard or read anywhere else: costo generally lasts 5 months for a 50 yr old, 4 months for a 40 yrs, 3 mos=3oyr old, etc. he said for me since i packed and moved with it, i set myself back, but he expects ill be all better by june (yay!). i am resting my voice more than not. i will try not to talk as much as possible- want that little cord to heal up!
ok i beleive thats enough for one email~ love to you.
oh, ps- i am teaching the choir one day a week to get them ready for graduation. i have lined up enough help to feel like james cagney in 'ragtime'. he was so old, they had to prop him up with poles for standing scenes! but i will stay on disability until next sept :( i miss teaching, but i think its wise.
Hi there,
ReplyDeleteThanks for sharing all of that with me. Sounds like you have really been driving hard for answers- that's so awesome. Although i know that tests are no fun at all!
Glad to hear your pain is less with these supplements and that your doctor finally declared a proper Ctosto/T. diagnoses- that's really great.
Glad you are getting lots of rest! Hope you are up and running come the next school year! Have a wonderful night and thanks again for the update!
Hugs,
Lucy
my thoughts are that it hurts to talk due to lung movement and possible vibration in that sensitive area. I have told people that it sometimes hurts for me to talk and they do look at me weird. It stinks but the best thing to do is take it easy talking until it calms down
ReplyDeleteHi, Are you still having problems? I too have similar symptoms when talking. It's so depressing and really effects how I feel.
ReplyDeleteI was recently diagnosed with Costo after realizing after two weeks of agonizing pain in my chest I just couldn't take it anymore. Im 15 and gym is just living hell. Running four laps daily then having to actively participate in a sport/game was misery. I kept hoping that eventually my body would get used to the sudden intense every day exercise (Im an artist.. I don't exercise much) but eventually the chest pain got so much worse. Having asthma, I worried about a number of things. I was afraid to sleep because of the pain. I finally managed to convince my mom to take me for a checkup and low and behold.. costochondritis. What sucks is even though I have a note to get out of gym for a week, the hour and a half long classes of sitting down, then racing through the halls to get to my class in 6 minutes (extremely big high school.. plus three floors.) It hurts to breathe or talk.. and my teachers are starting to get upset about my lack of participation in class. Unf, And its only been two weeks so far! I don't know how I can deal with this longer..
ReplyDeleteTHANK YOU!!!
ReplyDelete