Hey there everyone… I’m new and I’m reaching out with hopes of finding some understanding. Seems most people… Even those in my house… Seem to think this is all in my head. I am 44 and I’ve had 2 spinal fusions… Had my thyroid removed due to a goiter… I just recently had surgery on my right thumb joint. The dr removed the joint due to arthritis and took a tendon from my forearm and rolled it up put pins to hold it in place … So that’s my new joint. I’m in pain every single day but my pain management dr just in this last year diagnosed me with fibromyalgia. I’ve felt I have had this for quite some time. My mom also has it. I feel like I sit with my heating pad on my back and neck all of my waking hours. Well I will stop here … I hard to come across as too whiney… But I seriously need some understanding!! Hope to get some responses! ~Sue
Hi Sue. Nice to meet you!And you did not come off whiney at all. This is the place to vent, share, support and get and share information. You came to the right place!!
Welcome Sue! I am glad you reached out and introduced yourself. I look forward to getting to know you. Look around, lots of great information here. I am sending you positive thoughts and hugs.
Thank you both for your responses. I’m trying to figure out the site and how to add people.
I am new to this site as well, and VERY happy to find it. I have only recently been diagnosed after 31 years of searching for answers. 31 years of people telling me that there was nothing wrong with me. 31 years of struggling. 31 years of being told that I was just depressed. Even though I am in middle of the worst flare up I have ever had, I now have hope. I have already found some new ideas of what might help. I am shocked to see that there are no support groups in my area, but so thrilled to find this one online.
Sue and STEJC, I am so sorry you are suffering but happy for you that you have a diagnosis!
The first thing that helped me the most, was a heated mattress pad suggested by my massage therapist, which I purchased online from Sunbeam. I use the Preheat function while bathing, so the bed is warm when I get in, then reset to Low. For the first time in MONTHS, I do not wake every hour to turn over painfully to carefully rearrange myself in the bed. Except for one getting up to the bathroom, I sleep all night. On waking, I am not as stiff and sore as accustomed. Marvelous. My husband did not want it on his side, so I bought Twin size and simply laid it out on top of our regular mattress pad and underneath the bottom sheet. $49.49 with free shipping and the best money I have spent lately.
I have been reading a lot about fibro, because the more I know, the more I understand, maybe the more I can help myself. The doctors do not have any real answers. Reading about research projects, they are all looking everywhere and many competing theories. There are so many symptoms in different constellations in each patient, hard for them to narrow it down.
I recommend Devin Starlanyl’s book “Fibromyalgia and Chronic Myofascial Pain: A Survival Manual (2nd Edition)”. It is very dense and a lot of valuable information. Some days, I cannot read it because my fog is greater. But on days when I can read it, I have learned so much.
Another good book at the beginning is Claudia Craig Marek’s book “The First Year: Fibromyalgia: An Essential Guide for the Newly Diagnosed”. It is broken up day by day and then week by week and then month by month. Over the last 3 months, I have read the entire book and meant to read it again. The progression is very helpful to get clear understanding.
I do not know if it will help you too, but I hope so, and send you my best wishes and prayers, as well. RA:)
Thank you for the support. I have been using heat for years. It had been the only thing that has helped. Now I use heat and then cold packs alternately. I have also been using relaxation tapes at night. Trying to eliminate the stress out of my life when I can. I will get those books when I can track them down.