My different type of fibro! is it common?

General
1

ME fibromyalgia, i just found out i have this type. it makes much more sense because this type

has constant flare up, never feeling semi-okay.

does anyone else have this type?

2

Aliana, I've never heard of it. Can you please tell us a little more about it?

Oh, man, I'm so sorry that you have constant flares with no good times! I can't imagine that. I truly hope that you can find some relief. God bless you, kid.


PS: Just read up about ME. I've found a message board dedicated to ME/CFS & Fibro, which might be of use to you, Aliana. Here's the URL: http://www.co-cure.org/msgboard.htm

3

I didn't know they classified different types of Fibro but my docs took so long to tell them apart, I fall into this group too. I have constant flares too an it takes ages to find "good day", whatever they are. I've had a permanent stinking headache for 7 years since the beginning of my illness too. It sucks doesn't it, and having to need regular "sleeps" (if you're lucky) most afternoons.

4

i just found out the other day they had different types actually! my mother had done some research and called my doctor and he explained it to her.

me too, its awful ): i wish you the best

right omg my migraine is so debilitating i really wish you didn't have to go through this!

5

i would tel you more about it but i dont know any more thank you so much though

6

Girls, I'm sorry you both have to go through it too. From what I've read, it's much harsher than regular fibro. I wonder if some of the people who are in the most extreme pain (Jillian, Sunflower, Eeyorelover) might have this form of fibro? It would be worth looking into.

I can only say I'm saddened that you both have this harsher form of fibro. Good lord, no one deserves fibro, let alone a stronger version of it. All I can say is come here often to vent, and we will gladly listen and offer support. That's what we're here for, to make life more manageable for others because we've been there.

7

Awww thanks Petunia. Thats so sweet of you. I have developed ways of managing as you do after a long time. That is prob why I am a little aggressive towards the fibro and need to distract myself constantly. Driving is important to me too for these reasons, and will fight to keep my license even if it means not going to the doctors/specialists for certain symptoms and getting the treatment I need. A sense of humour is so important too. For some reason laughter is so good for pain management and works ten times better than meds.

8

I'm trying to read some on it now sweetie hadn't heard and the more I read the more it sounds like me also will be talk9ing to my Doctor about it when she comes back from Vacation

9

This is really interesting, I didn't know they were classifying Fibromyalgia! Aliana, your doctor must really keep up with Fibro studies, so that is great for you. It's important to have the most informed doctors!

Now technical stuff:

I found a lot of cool information, and things that I think we can all look forward to by having our illnesses become more acutely defined. Right now there is much debate over this, and many websites contradict each other, trying to define what exactly ME covers.

This is not yet a definitive diagnosis used in the United States. Other countries have adopted this term, but they seem to lean more toward it being a Chronic Fatigue Syndrome reclassification. The National Health Institute in the US is still doing studies according to their website.


Even though the diagnosis itself is still debatable, it is an acceptable billing diagnosis under:

ICD-9-CM 323.9 converts approximately to:
  • 2012 ICD-10-CM G04.90 Encephalitis and encephalomyelitis, unspecified
    Or:
  • 2012 ICD-10-CM G04.91 Myelitis, unspecified


So right now, it's being classified under a very broad spectrum definition. Fibromyalgia was originally listed under a vague diagnosis, "Fibrositis", which breaks down to "Inflammation of fibrous tissue". We finally got a better Fibro definition, so hopefully very soon we can get the more detailed classifications !

10

oh noo haha my dcotrs arent very smart my mother has doen her research. she has a show for children with special needs so she finds a lot of unknown knowledge through that.

yess thank you for all the information!
xoxo

11

right!! i was amazed!

12

okay! let me see what he says if you could!!!
xoxo

13

thats good that you have amazing coping skills
i as well like to be in the car, i cant drive just yet but its one of my favorite things, as well as listening to music.

laughter and humor is good :D

xoxo

14

i know, its awful!! i really hope they dont have it!!
my mother understands it better now also, she didnt fully get why my flare ups didnt end until now!
thank you so much

it really means a lot

xoxo

15

Then I have to say your MOM is awesome !

Good research on her part .. and really impressive work she does.

Thanks for bringing this to our attention, it's great information!

16

Well, lookie here, Livestrong, a great resource says there are 5 types of Fibro!! Who knew this? Not me, so here is the link!

http://www.livestrong.com/article/224862-five-types-of-fibromyalgia/

Thanks for posting this, it will help us ALL!

Sounds like you got some good answers, Aliana!

Stay strong, girlfriend!

SK

My goodness, mine sounds like all of them, though I do not have CFS, or don't know it yet, if I do. I need to look at Renie's post, that looks like good info!

17

http://medical-dictionary.thefreedictionary.com/myelitis

http://www.medterms.com/script/main/art.asp?articlekey=3231

http://www.medterms.com/script/main/art.asp?articlekey=8049

18

I think I have a combo of all five types of fibro !! I seem to always be in a flare up. I wish others didn’t have this problem because it’s so rotten.

Having this site to vent is such a help!

19

What!
there are different types of fibro :0

I can feel your pain ladies. I am in a state of constant pain. Never ending pain, migraines and more pain. Oh an vomiting, diarreah and constipation. I thought I was crazy because most people I know or have met that have fibro get along pretty okay and have many good days. I am sick sick sick of pain and fibro and all its symptoms. I need a good doctor FAST! any suggestions? I live in CALIFORNIA

20

This is excellent information! I am going to show this to my Rheum and Neuro Docs! as I have a crossover type of Fibro also. This is Day 1 for me on this site and you've already helped me a bunch!! Thank you, Thank you!!!