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As soon as l t this ALL be fibromyalagia "
I took notice .
I had severe Crohns disease in my early 20's . Perforated colon , colostomy, loads of surgery etc . Got the t shirt.
Enough trauma and illness for one lifetime , or so l thought . I rallied , studied hard , and worked as a Nurse for the next 30yrs . My health was never brilliant , so l worked 3 nights a week on the nurse bank . So that if l was feeling awful , l wasn't letting anyone down . I continued to study , and got extremely qualified, for someone stuck on nights . I had to accept that that was as far as my career was even going to go .
@ 10 years l woke up sick , and never got better . To cut a very long story short , l was eventually diagnosed with Fibromyalagia. Text book symptoms . Prescribed all the correct medication. For a while it seemed like that diagnosis was all wrapped up . Then there were more and more symptoms . I remember saying to my doctor "is this it , or is there still more to come" over and over . As the years went by there didn't seem an inch of me that wasn't broken or dysfunctional in some way .
Doctors were gaslighting me ., and my quality of life was so poor , l wanted to give up . This can not all be fibromyalagia ! ! !
I happen to read something on the net , which lead to something else , and something else . I tried to correlate all my symptoms , determined to find a connection between all of them . I was so ill that l was bed bound , and had loads of time to read . I researched for weeks . Then l read something about FND . Weeks have gone by and lm still researching . That's where lm up to .
Is THERE anyone out there that has considered FND and fibromyalagia together . They do apparently co exist , and it would answer all of my combined sympoms .
I'm only at the start of this new journey, but if anyone has a opinion on this , l would be eternally grateful
Replies to "As soon as l t this ALL be fibromyalagia " I took notice . I had..."
@alisonuk Wow I wonder if I hav this also? I wil hav 2 ask mi nu Dr. i hope U kan understan wat im typin. I lost mi spelin en mi actsodent.
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@alisonuk
I can totally relate to the myriad of symptoms ,the eventual gaslighting and searching endlessly for answers. I have not found it yet, as i continue to decline functionally .
Both of your diagnoses are actually labels given for symptoms that don't really fit the traditional medical model, as are mine.
So I have turned to another way which although has not helped yet at least has people who "get it" who research chronic pain and symptoms and are welcoming community. It is mind body or neuroplastic treatment methods based originally on the work of John Sarno who from NYU who posited that much of the chronic symptoms are not due to structural causes, many of which are found in most people as they age but the brain misfiring signsls, so while not psychogenic it is psychosomatic so that brain perceives danger dysregulates the nervous system. These types of symptoms are known to be considered by those in the field as much more intensrcthsn purely structural .there's a growing body of neuroscience research indicating the various pathways these symptoms occur . I recommend looking at the website of the Association for the treatment of Neuroplastic Symtoms, Neuroplastic.org I believe. Lots if resources and lots to find on YouTube
Look for Dr Howard Schubiner's videos on pain
He also has a great book called Unlearn Your Pain.
Although I'm way from doing well actually almost home bound , nothing else makes sense now. You have nothing to lose by trying it
Also check out Curable app.
Hope this helps even the tiniest bit!