New member in Tampa

[cstine]

Hi all!
I have felt so ALONE in the world lately so thought I would check into a forum... have been reading posts for the last 2 or 3 days and think i finally found people who "get me"!

I have always had a bad immune system and have always been sick with this or that.... I was always the one who was up from 6 or 7 in the morning till the time chores were done around midnight usually.... i had injuries or colds and worked straight through them. I never complained much. Used to play like a kid with my kids.... playgrounds, floor at home, rough housing on the bed Sunday mornings... I enjoyed life and my kids.

One day in late July 2011 my legs started to give out, i was super tired, couldn't function.... (they say there is usually a trigger and for me i know this is true. I remember the day it happened and these pains came right after.)

A rheumatologist diagnosed me right off. I argued with him in the office... saying, but i don't have this or that symptom... and left his office very angry that he thought i could have this disease i believed was a catch all for people when the docs didn't know how to diagnose them.
So, i saw a neurologist who did further testing then gave same dianosis... saw another rheumatologist. ... same diagnosis. I gave up on docs. I still refused to believe it.

I had been on Cymbalta for years before all this... as i found out accidentally 2012 the Cymbalta was a huge help with my symptoms. My doc also had me on Tramadol which does control my pain so i can function most days.

After tons of research and soul searching, in 2013 i had to give in and admit that this terrifying disease was my reality. Since then it's been a balancing act of kids, rest, chores, etc.

In addition, over the last 5 months my back issues have magnified 100%.... i am in so much pain every day i can't stand it. The doc is hoping physical therapy will help... otherwise i need back surgery asap and that scares me out of my mind.. .

I have great kids who usually are understanding... but they all have their issues and lives too.

So... i keep reminding myself... one day at a time.... one hour at a time... one minute at a time. ... and sometimes one second at a time...

Sorry for the long ramble... guess i needed to get it off my chest more than i realized...

thank you for listening.

 

[darkchocolate]

cstine, I am sorry you are feeling so alone. I can't imagine how that must feel. I am blessed to have a wonderful husband and two daughters.

I sure hope you won't have to have back surgery. Hopefully the physical therapy will help.

After reading your story and others, it really makes me think the fibromyalgia is a progressive disease in the way that we might start out with minor symptoms, that increase in intensity or location over time.

I have a hard time believing (at times) that I may have fibromyalgia because others have it so much worse than I do. Who knows, maybe I will get worse or I don't have fibromyalgia and the doctors just haven't found out what is wrong yet.

Any chance your doctor would know of a support group in your area? I always think it helps to talk with others that are going through or have been through what I am going through.

I hope you have brighter days ahead and you won't feel so alone.

 

[Cindykay]

Cstine - this is a great place to come to get that alone feeling taken care of. Hope you get some relief.

 

[cstine]

Thank you both for the messages
darkchocolate... for me when i look back i can see things from my childhood that fit fibro and it could have crashed into my life a lot sooner.... your comment about it seeming like a progressive disease i totally agree with... for me it has been...

I absolutely 100% pray for your sake it's not fibro... i hope the docs will find another diagnosis..... If it does end up being fibro you know where to find people who understand what you go through
Keep your spirits up! and keep us posted on what your docs find...

 

[Kanika J]

Hi cstine

I jst recently found this forum and I think its awesome ... I was diagnosed with fibromyalgia nine years ago after battling with its since the age of 17 -- I'm now 37 and fibro has been apart of my life for 20's and counting --- the acceptance is very hard -- because in the beginning were looking for a cure not merely an answer -- then to find out there isn't one -- and your suffering will be long lasting is enough to make you want to just end it all -- but we don;t because we can't --- fibro suffers are some of life's most sensitive optimist --- we hang on because we know -- sometimes hope -- and always pray that "this too shall pass" and it does ... I have lived with fibromyalgia and studied fibro for so long that I stopped counting and although there is no cure but its is very much manageable ... But my secret weapon against fibro is my optimism -- cuz anger -- disbelief -- and fibro rebellion so did not wrk --- I've been in flare up mode for the last six months -- every day is fibro day --- so for the moment i will cry then whn i'm done --- I have some cookies and hot chocolate with my name all over it ! ��

Oh yeah and Fibro isn't progressive its just complex meaning that there are more than 15 "symptoms" that you may experience with fibro and these symptoms have there own subset -- think of fibro like a tree with many branches and twigs -- there is a different look and feel when just the leaves russell as oppose to the whole tree shaking --- ok that might have been too deep of an analogy -- but all that to say you don't exp all the symptoms initially that wld be the progressive peace when over time a new one pops up -- this is also why its essential for us to make sure we have a doctor that is on our side and not jst collecting co pays -- Fibro -- MS and Lupus look the same !

 

[darkchocolate]

Kanika J, thank you for such a great description of fibromyalgia. You are right about attitude and being optimistic. I will keep that in mind whatever my diagnosis may be. I think your tree analogy is great, thank you for sharing that.

 

[diamond]

Hi cstine...welcome yes Kanika J's Tree is a very good description.

Everyone is different and all my increases in symptoms over 8 years i can pinpoint to a sressfull time ...even if its the anxiety over a bad flare that then introduces something i didn't even know was a fibro symptom like tinnitus and intersistial cystitis/vulvodynia.

Its an unpredictable illness as i never had any' lady problems' my whole life then one day it just started with no warning and became another thing to cope with.


Definitely take good care of yourself and don't waste precious emotions stressing about external things that may come up in your life that aren't really important. Easier said than done but try if possible to give your well being priority.

Only your health and kids and family are truly important.

With better days you can enjoy such simple things and lavish outings and possessions don't count for much when all you want is to feel well.

I hope too that the therapy helps your back and that you are spared the surgery

Take Care.

 

[cstine]

Hi Kanika J and willow, thank you for sharing and helping me along with the sharing process. I like the tree analogy. K- I hope your 6 month flare up ends soon... i see a lot of people say things like that regarding time and honestly i don't think i can handle counting the time that way... lol... i had started a fibro log when it all started and again when i finally accepted fibro... but can't continue as all i see are day after day of rough times... i have to take things a day and hour at a time... so i look at your comment with a lot of respect. I just hope we all have a peaceful night and a sunshine day tomorrow it's nice to meet you all... i am very grateful!