Hi Everyone,
A colleague sent me this article discussing a study just completed at Harvard and Massachusetts General Hospital. The study found Small Fiber Polyneuropathy in half of the study's participants- all of whom were fibro patients.
It's so encouraging to see so much more research on fibromyalgia these days! They're listening!
Love,
Laurie R.
Hey BaltimoreBaby!
Good to hear from you! This is just like dropbox, you need a user name and password, right?
Do I need to send you my e-mail address, I'd really like to read this! Thanks a thousand!
ATTN: Harvard Study Link Reposting
Hi SK! I am sorry, I didn't realize this link would be trouble to open.
For some reason, it took you to my Harvard work email access point?!
Here's where the article itself is housed online at the Harvard Gazette, this should work-
http://news.harvard.edu/gazette/story/2013/07/nerve-damage-and-fibr...
Take care! I am on vacation at my sister's in DC, so have access to laptop! ;)
Love,
Laurie R.
Thanks, you're just about 70 East of me in DC, and next door to Marc! Hope you are having a really good time, and getting some 'kick back time'!
Wow, I am pretty close by to you. One of these visits maybe we can plan to meet up! 
Getting kick back time, but also helping Sis out with her housekeeping. It takes me twice what it did just last year, but I am still going. Slow and steady wins the race! Please let me know your thoughts on the article… that is if you are so inclined.
Looks like L-Kitty found this too!
Good article thank you for sharing. Have a great time with your sister.
Hi Baltimore Babe! Lovely to hear from you again!
The article is great news! It looks like some of the causes of fibro are being unravelled, and some of the causes apparently are treatable. That blows my mind! Maybe some of us will be able to escape this hell. Oh, and I hope that every member of the fibro board reads this post. It is that important.
Hey, have a great time with your sister. i know how fun it is to kick back with each other and throw the bull. Enjoy!
And thank you so much for this article. I'm saving it.
Thanks for sharing, BaltimoreBaby! So happy that research continues and hope that our doctors are reading the findings. This gives me more HOPE!
Don’t overwork yourself cleaning. You’re a wonderful sister to help her out! hugs~ Sandi:)
Hi Petunia! I have laptop access, so I am able to post more often. I have missed every one of you extraordinary people. I was thrilled a colleague sent me the article. I am going to ask my neurologist for the SFPN tests.
Also, Petunia, I meant to ask you… I know you had sleep study and my insurance denied my request to undergo and I’d like to appeal. Have you any experience with appealing insurance denial? Any advice?
Thanks for any help. Ok, back to my vacationing. Take care.
Love,
Laurie R.
Good article, we're making progress!
Thank you, Laurie. It is very encouraging.
DC is SUCH a fun place to visit! I took my son there when he was 16 and we had such an amazing time! He loved all of the museums with technology in them while I loved Arlington National Cemetary (all of the history there!) plus a FAB art museum that I found.
Awesomly awesome that you get to visit your sister there too. I hope you can kick that housekeeping's butt and then go out someplace fun with your sister!
I only got as far as having my doctor try a different tack (ie, another reason) when I was rejected for Lyrica at first. The dopes kept thinking that I needed it for depression at first. Then I was denied again because they said that I could use other drugs for pain relief. So FINALLY after I go an ulcer from using those other drugs, they approved me for Lyrica.
Do you know why your sleep study was denied, Laurie? Could your doctor ask to try again, based upon a different reason? Like if you "suspect" that you have restless leg syndrome or sleep apnea or another sleep disorder? (Put in suspect in quotes for a reason.) Or maybe if your doc. "suspected" that your poor sleep was influencing your pain, causing you to need expensive pain meds that could be avoided with getting better sleep thanks to a .... sleep study!
That's all that I've got. I'm just really shocked that you were refused the sleep study.
We are, we really are! It's just nice to hear that fibro DOES physically exist inside our bodies; scientists know what some of it looks like for some people, apparently. I don't know why I find that so exhilarating but I do! I'm happy to picture those frayed nerve fibers because I know they actually may be frayed in my body too or yours or BaltimoreBabes...they're there! Fibro is REAL and here is some proof of it! Woo hoo!
Thanks for the info!
There’s quite a lot being discovered lately. Good luck to the specialists trying to make sense of who’s got what exactly and what they can do about it. I’m thinking they may give themselves a few beasty fibro headaches! Its so nice to share lol.
Thanks, Petunia.
It's an "in-lab" sleep study my doctor and I requested, so it's very expensive and I am quite sure that's reason it was denied. Is that what you had done- an "in-lab" study? Doctor says she did not think that the home study would prove helpful in my severe case, so we wanted the "in-lab" study. From what my sister could discern from the medical jargon the denial letter from insurance stated,
"You have not demonstrated symptoms of excessive of daytime sleepiness i.e. narcolepsy and you have not demonstrated that you have sleep apnea and that it has been treated.".
I could not decipher their letter further as it was convoluted, contradictory and poorly presented.
Any further advice given the letter's contents, Petunia?
Thanks!
Laurie
I agree! I feel the same way. Other than exhaustion today, I'm so excited that progress is being made. If I were Irish ( oh wait a minute, I might be, oh well ) I would dance the jigg!