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transparentWelcome to FibroModem.

Feel free to look around – you can read posts, learn about treatments or just go shopping. There is lots to do so, click on something and see where it leads you…

I am not a doctor or any other kind of expert in Fibromyalgia (FM)– I am just a fellow sufferer who is sharing what I am doing to combat this awful condition. If you want to know more about me, please have a look at Background Check.

But I do want you to know that you are NOT alone in this battle against this horrible (and sometimes debilitating) condition.

There are thousands, millions of people who suffer from FM. Please join our VISIBLE Army to help make our condition more visible.

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Everybody can spread FM awareness

Not just people with FM!

If you happen to enjoy my writing, or just want more information about FM, I have started an e-mag called LIVING WELL WITH FIBROMYALGIA – it’s free to subscribe. Just click the link, in the right column, to go to the subscribe form. I also welcome contributions at contributions@fibromodem.com

HeaderI have also started FCK, a Fibromyalgia blog directory – if you would like to read more, about others who are fighting the same daily battles as you. I realise that our logo is rather confronting but, I think, it is about time that we bring ourselves to the forefront (no matter what it takes!)

We need to get working if we are ever going to get these doctors in gear about our condition.

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WorldPlease join our CFS & FM community by clicking on the globe.

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Got an opinion?

51 Comments     0 Pings

By Anthony Sun Feb 3rd 2013 at 3:32 am  

I feel this is a fantastic initiative, I’ve only just become aware of your great effort to make Fibromyalgia ‘understood’, by its suffers, and the world in general ! Congratulations.

By lauraeffy Mon May 20th 2013 at 3:50 am  

Please please look into and try The Guaifenesin Protocol!

By fnmyalgia Mon Jan 6th 2014 at 9:06 am  

@Lauraeffy. I looked into guaifenesin and I found the majority didn’t follow Dr Amand’s protocol, but used Mucinex etc as an adjunct to regular meds. Which provided great relief of the sicca (dry, irritated mouth) and snot problem!

By Janina Linton Mon Feb 4th 2013 at 12:58 am  

I have had this condition for 5 years now, some I see much longer and can’t imagine the day by day struggle for everyone. I am happy to be part of this wonderful support group and thankful for your site. There is hope for us all

By Glynis Knapp Wed Feb 6th 2013 at 9:32 pm  

Hello, I love your new home but I think drapes at the windows are much nicer than the Venetian blinds you have put up!
That was just a bit of fun, couldn’t resist you see. Well back to reality, I have found your new home for us, your Fibro Family, nice and easy to navigate. I enjoy reading the information that relates to me in particular first and others second. Does that sound selfish? I hope not as I don’t mean it to be, but I think we all probably do that.
Well long may this home be blessed by having you at it’s head, many thanks, Glynis Knapp xx

By Purple Law Lady Sat Feb 9th 2013 at 8:20 pm  

Lucky that i kept reading…nearly SPAMMED you – but great introduction! Glad to see you here.

By Fabienne Karstanje Parey Thu Feb 7th 2013 at 1:49 am  

Still love it, and of course, still prepared to follow you!!! you may have troubles to believe it ( I know how we all feel from the inside), but you ARE really a sunshine! Thanks for being here, Simone! <3

By Fabienne Karstanje Parey Thu Feb 7th 2013 at 1:51 am  

shoot, thanks brain fog, forgot the half I wanted to write, lol…. Question, does your forum still exist? Not easy here, I think the time’s difference is too big, but I’d stil like to check it once in a while…

By Purple Law Lady Thu Feb 7th 2013 at 12:36 pm  

No, I deleted the forum because no-one was really chatting – and it was very lonely over there.

By myfibroexperience Thu Feb 7th 2013 at 2:14 pm  

Wow I can’t believe we are so close to our awareness date again!

By fmsstella Fri Feb 8th 2013 at 10:00 am  

Hi Simone
Still finding great uses for your site. It doesn’t LOOK very different from the WordPress one. You just have your own domain name. Hope all is going well with your hospital stay.. I appreciate all your hard work. You are so dedicated. Mind you don’t get diagnosed with SSD!
All good wishes
Stella

By Purple Law Lady Sat Feb 9th 2013 at 12:32 pm  

Hi Stella!
I wanted the new site to look as much like the blog site as possible, so everyone would feel comfortable.
I’m really glad you found me again.

By Wytewing Mon Feb 11th 2013 at 6:25 pm  

Hiya Simone,
I posted this at your old address as I didn’t know you had moved. Just in case you didn’t already know, Lyrica hits the pbs list on the 1st of March. I ended up emailing the department of health out of frustration. It is a miracle drug for me as it and Cymbalta have meant that more days than not I can now drag myself out of bed. While the weather is warm I am relatively pain free, its just the fatigue now and that has greatly improved.
Wytewing 🙂

By Purple Law Lady Mon Feb 11th 2013 at 7:01 pm  

Gotta love the warmer weather. My fatigue is killing me (and my brain!)

I can’t wait ’til March – no more ordering from India!!!

By Santiago Tue Feb 19th 2013 at 7:48 am  

Does anyone know if Hyperbaric Oxygen Chamber Therapy has been used to threat Fibromyalgia?

By Purple Law Lady Tue Feb 19th 2013 at 5:30 pm  

I have heard something about it (but it appears to be filed deep, deep in my mind). I may have to do some research on it.

By modifiedgirl Wed Feb 20th 2013 at 1:05 am  

Fibro fog must be getting the better of me-I can’t figure out how to subscribe to your daily emails

By Purple Law Lady Wed Feb 20th 2013 at 1:36 am  

on the left under the calendar – hope the fog lifts.

By Katie Wed Feb 20th 2013 at 11:47 am  

XXX

By Michelle Bradley Fri Mar 1st 2013 at 10:12 am  

I was diagnosed over 13 years with Fibromyalgia, and 3 years ago with Lupus, certainly each day is a ‘struggle’, but I focus on the positive and all the support from friends & family. Also I pray and ask God for ‘strength & comfort’ daily..Thankful for this website to have the opportunity to meet people & make new friends, plus offer & receive ongoing support. I appreciate being a part of this Fibro Circle of Friends. Have a Wonderful Evening!

By Purple Law Lady Fri Mar 1st 2013 at 3:09 pm  

Hi Michelle! Thank you for introducing yourself and I’m really glad that you’re part of our new circle.
Walking with a friend in the dark is better than walking alone in the light.

By Tracy Rydzy, MSW, LSWT Mon Mar 18th 2013 at 11:59 pm  

Great initiative…I try to do awareness on my blog too…too many ignorant people who feel they can judge us

By Tammy Thu Apr 11th 2013 at 8:36 pm  

It is so wonderful to know that your not alone. To be able to go somewhere knowing that everyone here knows what you are going threw. Thank you Simone to have this for us so that we don’t feel alone.

By Terri Welsh Sat Apr 20th 2013 at 2:46 am  

Well, I typed this once and I don’t know where it went!! I also just had to pull the string of my tea bag out of my throat upon swallowing it!! Talk about a Fibro Day! It went from 73 and severe storms to 33 and spitting snow here in Indiana! Everything hurts! I agree with the saying that fibromyalgia is the other F Word!! I feel the right to have some whine with my cheese today! Nothing is helping!!!

By Purple Law Lady Sat Apr 20th 2013 at 7:29 pm  

Be careful – cheese may make IBS act up!!!!

Just fine to whine here.

By Mary Penn Mon Apr 29th 2013 at 11:57 am  

I like this site a lot and thanks for helping people. I was diagnosed almost 3 or 4 years this summer. The doctor I saw doesn’t really know that much about Fibromyalgia.

By Purple Law Lady Mon Apr 29th 2013 at 3:32 pm  

Have you found a new doctor? If you’re looking, check out the Fibro-Knowledgeable Doctor section. These are all doctors (or other providers) who have been recommended by readers of the site. Maybe we can find you one, too?

By Linda Hill Thu May 2nd 2013 at 3:42 pm  

I bought some products from you guys couldn’t be more happy with my stock thank you very much I have bought more to support you & your company to find a cure for this horrible dam thing I have fibromyalgia xox linda :::: my husband & I have our own Business & I could put on my counter anything to help the cure if you have a poster anything you think that can help spread the word please contact me at. Linda-hill @live.com.au

By Purple Law Lady Thu May 2nd 2013 at 3:58 pm  

Linda, thanks for your on-going support. You can put anything you want from my site on your counter – there are posters and postcards in the Paint Your Town PURPLE section, or you could put a link to one of the videos (this one is pretty good: http://fibromodem.com/?page_id=10231)

If you want something else, just let me know.

By Sally OBray Sat May 4th 2013 at 9:56 pm  

I have had fibro for years.diagnosed 8 years ago.it is in crisis just now and am bed bound.get everything under the sun and feel pretty grotty.I will enjoy reading through this.x

By Stephen in Anaheim Sat Jun 15th 2013 at 7:14 am  

Hello, I just wanted to a leave a comment since this is the first time that I have visited your blog. Congrats on doing such a great job! Fibromyalgia remains woefully misunderstood and the more people who take the time to write and spread awareness the better. I do not have fibromyalgia myself, but a friend of mine does. As it goes with so many, she lived with this condition for years and years before it was diagnosed.

By Angie Sun Jun 16th 2013 at 7:51 am  

It is definitely good to know that I am not alone! Diagnosed 5 yrs. ago, never even heard of it. After learning and experiencing the things I have, I am sure my Grandmother suffered from it as well as degenerative bone disease. No one believed her either! Now I can surely tell you a person CAN hurt ALL OVER! The pain cannot be explained but is sometimes almost unbearable! God bless you!

By Merry. ( Meredith ) Fri Jun 28th 2013 at 2:44 pm  

I can empathize with dealing with Chronic physical pain ! In my own Journey that has been about 3 yrs – after a car accident , my Dr’s said I would have to learn to ‘manage the pain’. BUT as a Massage Therapist and knowing the Body and it’s systems pretty well I was and am frustrated that many Dr’s do not continue to find the source, the root, the cause of pain within their Patients. Fibromyalgia , MS, ALS and many more have unknown causes well I have found the ‘root’ of what I was told was Fibromylagia……actually 2 things – one is Pathogenic and the 2nd is Physiological.

This past September my Body gave out, could not even hold my head up, lift my arms, I hurt EVERYWHERE. Hurt to move, hurt to sit and yada, yada, yada…..
My Aunt & Uncle are Atlas Orthogonist Chiropractors in California- 3,000miles away from me but when he heard my condition he told my parents to send me out there right away………there is a longer ‘background’ story but the main thing is to give you the information.

The Physiological root of the full body nerve pain was that my Atlas, C1 vertaba, was rotated, subluxated, 15 degrees to the left and tilting posteriorly. The Medical Dr. That took my x-rays after the car accident FAILED to see that my C1 was NOT in the anatomically correct position. So I don’t go on, and on here look up the following to see if any of it resonates with you and to learn……..:)

Atlas/Axis Subluxation Complex Syndrome
Medullary Lock
NUCCA
Atlas Orthogonal ( http://www.ballchiropractic.com) – my Aunt & Uncle’ s ,
Dr’s Carol & Joe Ball , their site is filled with
A lot of great information and explanations.
We found an Atlas Orthogonist Chiropractor close to me Thank God! There aren’t many Dr’s, including neurosurgeons, that the Atlas and Axis are not on their radar.

In addition to my injuries from the accident, I found out too, this past Dec, that I have Lyme’s Disease 🙁 which alone attacks the Nervous System. It is an epidemic not just in our country but in Europe too! The tests many Primary Care Physicians do is not sensitive enough to detect the spirochete bacteria and the co-infections that come with it in many cases. The Western Bot blood test processed by Igenix in California is the way to know if a person is infected. An LLMD , LYME LITERATE MD. , is necessary for the best course of treatment. I have a lot of information about Lyme too……..so please feel free to connect with m. merryb08@yahoo.com.

The simple reason I happened to find your blog was I was looking up some technique information on Reflexology for my practice…….just now slowly able to work a little bit :)……..my Client’ s are very loyal and have been very patient with me in dealing with this……..and have helped a few pinpoint there ‘mystery pain’ that through massage , acupuncture, chiropractic etc. have just been managing…………not good enough. ;).

Sorry so long, my friends say I lost my ‘edit’ button in the accident too 😉 but there is so much and I want to help those out there suffering for an unknown reason and share 2 possible reasons why that may be. Btw, my business site is http://www.trinity33.com if you wanted to see that I’m legit 😉

Wishing you peace & healing along this ‘bumpy’ roller coaster of a ride……

……….~ namaste ~

Merry

By Kasey Thu Jul 18th 2013 at 8:39 pm  

Not even a real illness

By Purple Law Lady Thu Jul 18th 2013 at 9:54 pm  

Thank you for making the effort to find my web site. It is disappointing that your comment doesn’t illustrate a similar effort.

By Terri Welsh Tue Jul 23rd 2013 at 2:42 am  

I will try my best to keep my cool to the opinion posted July 18th! I would say “Walk a mile in my shoes!” but I wouldn’t wish this on anyone! Just one day of being in constant pain of everyday normal life can be can be worsened by the passing of a car, the slamming of the door, or a ringing phone, or someone mowing their yard, by jarring, thumping, pain, prolonged physical activity and by emotional stress: EXTREME SENSORY OVERLOAD!!! Try living while avoiding much of the stimuli that life brings!!!

All chronic pain patient suicide rates are significantly greater than that of the general population! Hello! The needs of chronic pain patients are not being met! I advise the person who made that comment to make a friend with FMS! When you experience the sad honor of attending a memorial service for one woman who could no longer bear her suffering you might just change your mind about it!

And, no matter to the belittlement and victimization of FMS patients of some researchers that have written that patients with FMS have a lowered pain threshold is so not true! In fact, people with FMS experience a lot more pain from given stimulus than a healthy person would! In all actuality, we FMS/CM people, have a HIGHER PAIN TOLERANCE, even though we feel pain more readily! The amount of pain some of us endure is amazing!

People who make comments like that, just as our care providers, need to become ENLIGHTENED AND EDUCATED in the options available for the treatment of chronic pain. WE DESERVE NO LESS!

Fibromyalgia and Chronic Myofascial Pain has changed every aspect of my life! My own family members struggle with believing it! Why, because those of us who can, will push hard to keep some resemblance of the life before this pain!

FibroModem is MY SUPPORT GROUP! I thank God I found this site! I was about to give up! I was going to apologize if I offended but no, just try one day to live in the pain I live in!!

By Robert in Alabama Mon Jul 29th 2013 at 9:20 am  

Hello there! I just wanted to say how impressed I was with this site. Fibromyalgia is a complex disease that not too many people know about, let alone take the time to write about. While I don’t live with fibromyalgia, I spend a lot of time writing for a medical research blog, and plenty of the posts have been on this complex disorder.

By Lisa Sun Sep 1st 2013 at 6:06 am  

Thanks so much for you & your website I have fibro for the past 3 yrs.I finding it hard to deal with.Thaks again.Lisa S

By Lisa Sun Sep 1st 2013 at 6:13 am  

Terri I really know what your going through if you ever need to talk .Please email me @ vickers ken60@yahoo.com.Hope yor day is going well .Lisa S

By angie bailey Mon Sep 2nd 2013 at 7:57 pm  

Hi everyone im new here I looking forward to speaking with people who really understand what were going through . I was diagnosed a year ago and have trued the meds , done physio , iam now at a pain clinic , I see my consultant in 2 week again he put me on lycria but I just hurt and struggle with everyday . The weather effects me all the time and the humidity kills me , its rainy today but warm ! Sendibg hugs to everyone xxxx angie

By joshuajdavid Wed Dec 11th 2013 at 12:20 pm  

Great writers too ; )

By Linda Wed Feb 5th 2014 at 5:11 am  

I’ve had Fibro for 20 + yrs. I did the studies for Cymbalta, Lyrica and Savella. The Savella doesn’t do anything and Lyrica and Cymbalta give me restless limb all night, legs and arms. I did my own study on Guaifenisen and it helps me with energy to stay alert. I work out 3-5 times a week, however my body is feeling. I use pain meds if necessary, but a little bit of Mary Jane relaxes my muscles and I can deal with the pain and bullsh*t! Medical marijuana should be an option. I’ve done 10 years of chiro, massage, accu, and PT. I find doing PT at home on your own schedule works best for chronic pain patients. I use my Wii fit and walk when I can. Swim and excerise in a pools is the bomb. I know everyone is different, just wish more people understood us. Especially the Medical Community! God Bless us all! Looking for a Doc near Daytona Beach! Thank you for the blog!

By Wilma Fri Feb 14th 2014 at 12:00 am  

tried gabapentin… but kept forgetting to take it. so i took two at night before bed and ended up in the hospital ER. That’s a serious drug.

By Santiago Sat Mar 22nd 2014 at 11:13 am  

I have a question and hope that you can help me. I dated a wonderful woman for over 2 years, she sufferes from firbromyalgia and she is in my opinion one of the strongest people that I have ever met. To deal with the pain that she goes through on a daily basis and still have the strength to smiile and go to work even thou her body hurst is very tough. At one point during our relationship we talked about getting married, but 9 months ago she said that we couldn’t date anymore. She said that she felt loved, but she could not deal with the stress that the relationship was causing. She asked me not to contact her because that will just cause her more stress. Her birthday is coming up and I was hoping to send her a birthday card. I don’t want her to get stressed because of me, but I also want her to know that I still care for her and I don’t want her to feel alone. My question is, do I send her the card?

By Purple Law Lady Mon Mar 24th 2014 at 4:25 pm  

Sweetheart, this is a very personal decision – I don’t know the woman you are talking about so I really don’t know how she will react to a card from you.
I might (in the same situation) send her a card, via mail (don’t drop it off – she obviously does not want you around at the moment), wishing her the best and reminding her that she knows where to find you if she needs a friend. That’s it – no pressure.

By Kelly Tue Mar 3rd 2015 at 11:34 am  

I started my own local fibro community… https://www.facebook.com/groups/FibroSupportFrankfortAndSurroundingAreas/ It allows me to share, vent and heal. It is the best room on face book! PLUS learning about KRATOM, I am now off 11 out of 13 medications and my chronic pain is now under control after 10 yrs of no end in sight… I’m optimistic!

By Purple Law Lady Thu Mar 5th 2015 at 11:46 pm  

Congratulations on starting your own FB group – I don’t know if it’s the best room: I have a page which is pretty darn good, too (https://www.facebook.com/FMawareness)!

By Chrissy Brown Thu Aug 20th 2015 at 6:25 pm  

Watched Million Dollar Minute today 20 August 2015 and heard the best news I have heard since being diognosed with chronic fatigue and fibro 5 years ago. What good news to have something in our own country that we can relate to, well done.

By Purple Law Lady Thu Aug 20th 2015 at 8:28 pm  

I have had tons of emails and phonecalls since that went to air. BUT your’s is the most appreciated…really!

By Cherie Sat Aug 22nd 2015 at 9:17 am  

Good to see you on Million Dollar Minute and find someone here who has a blog. I have had FM for 35 years and it took almost 20 of those to be diagnosed (like so many others!) and sometimes it gets the better of me – probably the most frustrating part is that I can do something one day which has no adverse effects and another day the same thing will put me flat on my back. Thank heavens for Lyrica!

By Purple Law Lady Sat Aug 22nd 2015 at 2:53 pm  

Hi Cherie,

It took me 2 weeks to get over the filming day at MDM! And I can’t believe the jump in visitors to this site…up 1700% (yep, you read that correctly).

I hate the unknown factor of FM as well. It stops me getting (and keeping) a job or even volunteering because I am so unreliable (ok, my FM is the unreliable part!)

Anyway, I’m glad you’ve found me.