Thank you for replying. As I mentioned. All of this is new. Dealing with the pain does become somewhat easier when I find someone who can hear me and who can relate. Right now my biggest challenge is getting the doctor to hear me. I've been treated for so many other medical issues and now having to endure surgeries. All while dealing and processing the daily pain and discomfort.
Welcome to our community Newfibrogirl. Most of us have been where you are, newly dx fibro and then other dx (diagnoses) to boot. We're here to support each other, educate and make suggestions, and comfort when needed. You can rant and complain and we all understand. We don't judge of criticize each other.
I was very healthy until 2008-2009. Then I left work in 2010 for a pelvic mass. Due to one dx after another coming every few months I've not been able to work. Some of the newest and worst issues are fibromyalgia, sjogrens, hypothyroidism, tremors, imbalance, and memory issues. But I have a strong faith. It's what helps me cope day to day. I pray for everyone on here when I know their needs. And I'll pray for you too. I hope you can find support and information to help you learn to cope. My biggest change from fibro and sjogrens was having to learn to pace my activities with short breaks, and rotating standing and sitting appropriate time lengths. Good luck and blessed you! 🙏🌼
Thank you. Flappys.. I've been looking online and I did not realize how much info there is out there. I'm trying to digest it all. I .currently deaLong with finding a Dr to remove multiple tumors from my abdomen and uterus. In this process and brining my family in on my health struggles I've learned my sister has had a lot of the same issues I have . so I suppose it could be a bloodline thing.
Defiantly learning the pacing my life is a huge challenge. I'm not use to that. My flares are epic and surprising as to what brings them on. What advice do u have when it comes to speaking with doctor's. I feel I tend to babble. And I forget a lot of important information. How can I get them to hear me when I explain my pain.
Newfibrogirl, first of all, welcome to our community family. I'm really sorry that you are in such pain. We all learn each and every day, even after years of suffering, how to cope and adjust our lives to work around our pain. We all lean on one another and share our issues, pain and questions and get advice for each other, etc.. There is never any judgement here, Only compassion, sympathy, empathy and comradary. We all have different diseases, syndromes or conditions but the one thing we all share in common is that we all suffer high levels of pain. I hope that you can find the help and support that you are looking for. Always know that any number of us
Before going to the appt make notes, and keep it in your lap to refer to. Also get a second or third opinion if you feel I'll at ease with a dx (diagnosis). I usually limit to my 5 most important concerns, but I have had more occasionally.
Like my PCP blew off my elevated thyroid levels and inflammation levels, among other things. I found an endocrinologist and rheumatologist on my own. They dx me hypothyroidism and sjogrens & anemia this year. I just knew I was in too ugh pain with too many symptoms to just be fibro. My PCP kept saying it was all due to my getting older... I'm 54.
Educating yourself will help you, like symptoms... Do they match the dx, or is there more going on? Hope this helps! 🙏🌼
Yes this helps ..it also helps connect a few dots. I've been on thyroid meds for yrs and anemic for many yrs recently. I never connected then. My pains I've had for years but ignored then .just excusing them due yo long work hours late nights etc. Alwayzinpain thank you for your input also flappys thank you. Especially for the prayers. I'm hoping I soon can begin to gather information so I can be an asset here.
When they diagnosed my hypothyroidism and sjogrens I researched then. I was surprised to see they share many symptoms along with the fibro. I call it my "triple whammy" fatigue when it hits. I also have a genetic defect that prevents me from absorbing & metabolizing B Vitamins, especially folate (b 9). It's the MTHFR gene, and I've only met one other who has it in this community, Ferretbandit, though it's supposedly as common as one out of two people having it.
Staying exhausted and an oral rash helped diagnosed the sjogrens. They finally did a biopsy on the trash because it wouldn't clear up and is based out nearly 5 months. After starting the Plaquenil it went away and I began noticing slow improved pain and fatigue levels.
I hope you can use what you learn and through this community to inform your docs so they can find the right treatments for you. There is so much advice and suggestions from others, and you just have to do trial and error to find the best for you. 🙏🌼