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tleeves

New member
Joined
Nov 20, 2013
Messages
3
Reason
DX FIBRO
Diagnosis
11/2013
Country
US
State
FL
Hi Fellow Fibro friends! I was just diagnosed with fibromyalgia, which is also called "central sensitization disorder" by Mayo Clinic in Jacksonville. They have recommended a two-day treatment program and I will be attending on Monday and Tuesday. I met with the psychologist that runs the program yesterday and felt she was really concerned and interested in helping us to learn more about this monster so we can hopefully have a more positive life.

This disease has robbed me of my 30 year career in which I can no longer function cognitively at an executive level. This feels like failure to me and that I've let my family down as I have always been the breadwinner. Now I wait at the mailbox for my disability benefits to arrive, which is pretty much when they feel like sending. I'm terrified that I will lose my medical insurance! And I know I need to move out of this house and lower my monthly living expenses. Anyhow, I doubt the session will help me figure all that out!

About me real quick...I'm a 46 year old mother of two boys, 20 & 25 and married for 22 years. It all started 4 years ago with burning pain on tops of my feet and in my joints in my hands. Then enlarged lymph nodes in my neck along with fatigue, joint poin, cognitive impairment, rash on chest, hair falling out, etc. Initial diagnosis was lymphoma until the biopsies came back negative. However, I still continue to have the enlarged nodes. They removed one altogether and it showed "reactive hyperplasia". I also have excess tissue in my throat and lingual tonsils. I would be curious to see if any of you guys have a similar experience with the enlarged nodes in neck?!

So now I'm at Mayo trying to get answers...so far, fibromyalgia and I hate the stigma that goes along with this disease. My blood work looks great (cause I know someone will ask), some arthritis in hands, feet and top of femur. History of saliva stones, uveitis and dry eye/mouth.

Thanks for listening! :?
 
RIGHT OFF I PICKED UP 2 WORDS YOU USED, "Disorder" then...DISEASE. The reason I'm bringing this up is, there are some Dr.s refer as disease, and others disorder. THE REASON BEING IS TO HAVE A DISORDER, IT'S SAYING THERES THIS HEALTH PROBLEM WITH THESE DISORDERS. COMPARED TO...THIS IS A DISEASE, TO WHICH THERE HAS BEEN SCIENTIFIC RESEARCH THAT SHOWS, IT IS A DISEASE.
JUST WONDERING WHAT FLORIDA STATES INTERPATION IS, AND HOW IT WILL EFFECT YOUR HEALTH. AS FAR AS TREATMENT GOES.
ROBERy OF ONE ONCE VIVATIOUS personality, ready for anything, has turned to.....PRAY ALOT, NOT A BAD THING, GETTING REALLY GOOD ABOUT SHRUGGING OFF THE " doubters ". The rude crude nasty nieve *******s. I Don't have income from ssd, tried once, now I have to hire a lawyer. IT'S insanity! If we get down to it, the generation I came from said work or go without, the boomers, there in titled you know! Not married? Single and pregnant? Let's give you a home, pay for all your health and the babies Untell there to old to recieve. Or better yet, ahhhh you hide here pay no taxes, don't worrie, the rich get richer , the poor get poorer, there's no modest income any more. Wow I'm crabby! Sorry, oh wait ! I'm not sorry, it's just me right now. Good thing I don't have terrets.
 
Hello tleeves, welcome, we are glad to meet you.

My onset is kind of similar to yours. I was diagnosed earlier this year because of burning pain in my hands and feet. My personal details are surprisingly similar to yours - I am 47, mother of 2 teenage boys, married 18 years and the breadwinner for my family. I feel lucky I am still working at this point.

I have not experienced lymph node issues (or rashes or hair loss). I'm still pretty new at this, though. You might consider posting your question in the general discussions section. I think more people will see it there.

I've found this forum to be very supportive place, and hope you do too. Please feel welcome to exchange information, make friends and vent as needed.
 
Have not been diagnosed with nodes in my neck, but something is wrong in there. It was so far down on the list when I was diagnosed I didn't bring it up. Now that I know more about fibromyalgia I will ask as I have had some swelling off and on for a couple of years and it is sometimes difficult to swallow or I kind of choke. I read somewhere that difficulty swallowing can be related, so I try to ignore it for now. I guess I should move it up on the list. The rheumatologist who diagnosed me did check my throat and ask me to swallow. On that day I couldn't swallow for her.
 
I have swollen lymph nodes on and off, and often have difficulty swallowing. I also have muscle tremors all over, but they are most problematic in my throat because it effects my speech and singing ( I'm a singer/actress/director). My doctors haven't paid any attention to my lymph nodes; not sure I've mentioned the swallowing; my neurologist is pretty concerned about the muscle tremors. I think he is intrigued by my singing problems. :) I would be really interested in what your docs have to say about the lymph stuff.
 
tleeves - by the way, we probably wouldn't ask about your bloodwork. I think most of us have perfect bloodwork like you except maybe vitamin D deficiency which is common for us. I'm so sorry you had to leave your career. I hope you have found/will follow be something fulfilling that you are able to do. I know that day may come for me and I'm trying to brace myself for that adjustment.
 
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