Hi all, Found this forum from the Chiari site (which I also have). I was diagnosed with fibro in 1992, so I've been living with it for a VERY long time. I've NEVER been on disability and never left a job due to my fibro. Part of the reason for that, I believe, is that my former doctor diagnosed me very early and treated me successfully from day one. I got lucky. However, I worked in the medical field for over 25 years as a scientist, so I had some base in understanding of physiology anyhow, but I do credit my doctor for doing such a good job with me. I now live in an area that is not a good fit for me, but I feel fortunate that my issues have been controlled. I'm glad to be here, and believe me, I've been through it all....the fog, the lack of coordination, the pain, the sleepless nights, all of it. My youngest son was only 18 months old when I was diagnosed, so he's never known the "normal" me, and that's sad, but we've managed to accommodate my fibro as if it were a part of the family. Attitude is everything, I guess. So if you have questions, please ask, but know that I'm here in support of all of you, particularly those who are newly diagnosed.
Welcome to the group!
Welcome to the group, VinatgeHippie! Always good to hear from a scientist! Surely we can learn much from you!
Hi Vintage Hippie,
Welcome to this group. It is an amazing group of people! They have helped me so much and I pray that some time I can offer words of comfort like what has been offered to me.
Hi VintageHippie, welcome aboard. I'm kind of new here too, but not new to FMS/CFS/Hypothyroidism. I was diagnosed 23 yrs ago at age 43, but no treatment whatsoever, since all (13) docs in 6 yrs prescribed anti-depressants, which certainly did DEPRESS me, PLUS they didn't help me at all! They told me to find myself a boyfriend (I was widowed at age 24). I am now (happily remarried 10 yrs ago) going through a terrible flare-up and can hardly function. I'm presently looking into HYPOTHYROIDISM which is now believed to be the case of the "phantom" disorders of FMS/CFS!!! I have always had a good attitude and will continue to; thankfully I have a wonderful husband who would go to the MOON for me! Good luck to you, hope you can stay positive, and let's hope for a real "drug-free cure".............Lori
Welcome, welcome! I am sure we all have so much to learn from you.
I was diagnosed years ago but resisted it since my issues were only upper body, not all over pain. BUT after a recent trip to the pain clinic, and being diagnosed again, and then researching all of the symptoms, I have embraced the diagnosis.
I've just started Cymbalta, which has taken a lot of the pain away, and once I went from 30 to 60 mg, my energy improved.
I've also just started trigger point injections and they have taken away, maybe 70% of my pain. I'm going in again for a 2nd round as there are still, maybe, 10, that are firing. If I can get them all turned off, I feel like I'll be a brand new person and begin to do upper body strengthening.
I was a sculpted and very fit personal trainer for 9 years, and then the pain and inflammation started. I didn't know why. That happened in 2007 and it wasn't until just this month that I was diagnosed and began treatment. Prior to that I was actually asked to leave an internists' office as they suspected I was a hypochondriac.
Doctors.... can be horrible or great. I'm praying for great doctors for everyone, and a beautiful day today!!
LadyLori46 and TryingToThrive both hit on things that I think are very important: 1. MIsdiagnosis or mistreatment--if a doctor tells you "it's all in your head" or "you need a boyfriend" or any of those STUPID things, then find a new doctor. Clearly, they're not a real medical practitioner at all; 2. Denying you have fibro--I never denied it because I didn't know what it was, but I have lots of friends who did----accept it, get on the road to recovery as soon as possible, and keep LIVING. Fibro is a bump in the road. It's not terminal, it's just FRUSTRATING and yes, at times, debilitating. BUT the sooner you accept your diagnosis, get PROPER treatment, and get back to living, the better off you'll be. There are myriads of studies out there that equate the worst cases with how long it took them to get properly diagnosed in the first place.
Remember: You need a fibro-literate doctor just like I needed a lyme literate one when I got lyme disease. A regular doctor who's well versed in fibro (or even a rheumatologist) is VERY rare. They may SAY they are, or even advertise that they are, but they often are NOT as well versed as they should be. Just be your own advocate. No one else can do it better than you can do it for yourself. :)
Hi Vintage hippie
Welcome to the group I'm a newbie as well to both the group and fibro. I have also have other condtions as well but unfortunately I am on a disability through work. I try to stay positive but it can be difficult at times especially being alone with my daughter and I. My daughter who is 13 is a shut in due to her severe anxiety, depression and
OCD but I haven't given up on her she is now starting to
leave the house 2x a wk thanks to a program I fought to get her in.
I feel so guilty sometimes as I am supposed to be a positive role model for her and here mom can't even do a simple task as the dishes sometimes. I get so lonely sometimes that I wish I had someone to lean on sometimes for support. You know someone to say to me no worries I will make dinner or clean up or just to tell me it will all work out.
Sorry I think I got carried away but I got the sence that maybe you would understand. Thanks for listening