I was very active and sporty until my final year of University when, within a six month period, I had a car accident that gave me whiplash, a bad gastrointestinal infection that I didn’t recover from and lots of stress. A few months after graduating I was diagnosed with IBS (Irritable Bowel Syndrome) and a year after that I had full-blown Fibromyalgia Syndrome, although I didn’t know it at the time.
I then steadily got increasingly ill for 3 1/2 more years, first struggling to get a diagnosis and then getting very limited treatment that was brought to a halt because of a misconception a so-called specialist told my GP. In desperation, I then started seeing a private specialist who turned my life around completely within six months.
If all the information I now know had been easily available and widely known about when I first got sick, then I would never have deteriorated so much and had to give up so much. Because of this, I feel very strongly about raising awareness of Fibromyalgia Syndrome (FM or FMS) and helping other people in the situation I was.
I have been a moderator on the online support group at the butyoudontlooksick.com message boards for years now and through there have helped and counselled many people seeking a diagnosis, or dealing with Fibro, ME-CFS and a host of other chronic conditions. Before I was a moderator on butyoudontlooksick.com, I did a similar role on the helpforibs.com boards. I am now the Chairperson of the West Berks ME & FM Group which aims to raise awareness, provide support and make a difference for everyone affected by ME-CFS or FM in the West Berkshire area.
Having had to give up my chosen career of being a yacht-racing navigator and meteorologist, I am retraining to be a garden designer and hope to eventually work pretty much full-time at this. I am married to the wonderfully tolerant Simon and we have a Springer Spaniel called Archie.
November 28, 2007 at 8:12 pm
Dear Lindsey,
Thank you for commenting on my post “Sorry You Stroked, but Heart-wise you’re fine.” In your explorations of treatment for fibromyalgia, did you ever consider Ayurvedic medicine? I ask because I interviewed and wrote about a woman with fibromyalgia for my first “Own Your Health” book (written with Brian Berman, MD and published in 2003) and she gained quite a bit of improvement by seeing an Ayurvedic practitioner. I also interviewed a physician whose research has linked fibroymyalgia with chronic fatigue, as well as with MCS (multiple chemical sensitivity), and I wrote about her findings in a different chapter of the same book. By the way, the first patient I interviewed said her colleagues, as well as her husband, grew impatient with her fibromyalgia saymptoms, saying “but you don’t look sick!”.
November 28, 2007 at 8:28 pm
Ayurvedic medicine is one of the few disciplines I have not explored. I am now doing a lot better with conventional medicine, having seen a specialist who rxed a dopamine agonist.
January 5, 2008 at 12:33 am
Hi Lindsey! I would love to add you to my blogroll on Fighting Fatigue. would you like to exchange links with me? You have a nice blog here! Keep up the great work!
January 8, 2008 at 1:28 pm
Dear Linz,
Hi is this Dr that has helped you called professor J.E.DAVIES.
GOOD site Linz well done.
Regards
Sharron
January 8, 2008 at 1:43 pm
Yes, Prof J E Davies at the UK FM/ME Clinics (link under FM Relevant Links on left).
February 28, 2008 at 2:33 am
Lindsey,
Thanks so much for sharing your story! You seem to be helping so many! Check out my story at http://www.cidpandme.blogspot.com.
March 31, 2008 at 2:39 am
Lindsey,
Just found your blog while looking for information about fibromyalgia and chronic pain management — fantastic stuff! I’d love to know if you’d be interested in collaborating on a small FM project and I’d love to share more about it with you; would you mind sending me an email when you have a spare moment? Thanks!
Lesly @ http://www.wegohealth.com
June 3, 2008 at 11:20 pm
just wanted to pop by and say hallo. we at bydls appreciate you more than you know.
xo
June 8, 2008 at 10:06 am
Just wanted to let you know so many people thinking of you.
Keep your stories coming, it’s good for the mind to vent, express, write etc
Take care
xxx
July 5, 2008 at 3:35 pm
Hi Lindsey
i HAD JUST BEEN TO SEE A RHUEMATIOD DR YESTERDAY (FRIDAY 4TH JULY).AND WAS TOLD I HAD fIBROMYALGIA I HAD PICKED UP THE FULL HOUSE MAG AND FOUND YOUR STORY WHILE WAITING A LIFT HOME.i can tell u i was so releived to have a name put to my pain the dr told spoke about all the symptoms and i as told i have a full deck of them all,,she has gave me a booklet on iyt and a leaf;let on a patch called buprenorphine which i have to look at and discuss my my local gp my pain at moment is out of control and she thinks this will be more useful than the tramadol + paracetamol im using along with amitryptiline after all these years of suffering im hoping to get a lil ease from it now ..will look at your blog ..mary
July 20, 2008 at 8:18 pm
Hi Lindsey
!!My name is Cynthia Mittel, and I am currently doing research for a book about how people in around the world treat/deal with having Fibromyalgia physically, medically & socially. Let’s make our Fibro world a little smaller! It looks like you have a lot of contacts on this site, so I thought I’d send this directly to you. I also posted on the International Campaign blog.
I was diagnosed in 2001, and I am a Core Member of a very large support group in Southern California. I am setting up a “pen pal” program, and would like to see if anyone would like to join us? I will be setting up a database, matching members here with people across the globe, and after some initial questions back & forth, everyone will proceed (or not, it’s up to you) at their own pace. Either email or snail mail is fine, and I will be changing all names and identifiers to protect everyone’s identity.
If this sounds like fun, please email me as soon as possible!
Thanks,
Cynthia Mittel
cynamin.girl@yahoo.com
August 18, 2008 at 7:49 pm
Linz, it is you!!! I know you from Heather’s IBS board. Jeez, it’s been ages. So many super women there, JenX, etc, blocking on names. I’m still living with fibro, but my big problem is migraines. I’m currently getting them almost every day and I’m basically house-bound and bed-ridden. But the pain of an IBS attack is still worse! Can you believe it! (I was the one in the Santa hat, if you have trouble remembering.)
Love to hear from you, your blog looks great, I’m so happy I stumbled across it.
October 1, 2008 at 6:47 am
Hi Lindsey,
Love your blog and it looks like you are doing a great job of raising awareness about FM and creating a community. I also have FM and blog (messy)to help me get through but would like to draw attention to a petition to the PM against the use of CBT in the NHS for all conditions lumped under CFS, a great chance to shout about it! A link swap would also be great, thanks in advance. Jen
January 7, 2009 at 5:37 pm
Hi Lindsey,
Have you tried the guaifenesin protocol? Our fibromyalgia patients have been experiencing tremendous relief with this treatment. If was first developed by R. Paul St. Amand, M.D., with whom I work closely. I can help you find a doctor in your area.
Best Regards,
Dr. Tarcha http://www.thenaturaldoc.com
January 7, 2009 at 5:39 pm
No, I haven’t, I prefer to try proven treatments.