Hey Everyone
Ive recently found out that i have fibromyalgia and im struggling with my emotions about having this.
i dont really know what to do or how to truely feel about having this as i feel like i have lost all control over my life. any tips on how to feel in control of my life again?
thanks
Hi Lovett
I am lucky to have a very supportive family who are more than willing to do anything to help me, and i have recently begun seeing a very supportive and helpful doctor,
Thank you for your advice
Fae
Fae,
Welcome to the group. I think you will find a lot of new friends on the board who are newly diagnosed and are going through the same emotions you are. You will also find a lot of new friends like Lovett who have been diagnosed for a while who can share what they've found to help cope with this diagnosis. I was diagnosed in February but have known I've had Fibro for a long time. I think your first step is to accept the diagnosis, while not allowing it to control your future. I spent February trying to reduce my stress therefore reducing my anxiety. In March I started researching ways to eat healthier because my doctor, who is amazing, suggested I give up gluten and dairy. In April I will add exercise, walking, and see if that helps. And I don't mean walking with a mission but walking and enjoying nature.
Also, unfortunately it will also depend on how Fibro affects you to how you need to cope. For me Fibro is mainly in my neck, shoulders and right arm. I also feel it in my legs if someone touches them or if I've been standing too long. Some others on the board, unfortunately, have much worse symptoms than I do. I believe the biggest thing with Fibro is learning to slow down and take care of yourself. Take Epsom salt baths, get massages, talk to someone who will listen (we are always here), sit down and rest when your body says its tired, eat healthier.
There is another post about, I believe the post is something like rate my pain. Where you can color, on line, your pain so you can show your doctor or family/friends where you hurt and how bad. There is also a free app called "My Pain Diary" that will allow you to journal your pain. You can add as many entries a day as needed. I have found that by doing things to minimize my pain is what helps me take control over my life. I have three kids and a husband so I can't lay in the bed and waddle in my pain. I have to put on my big girl panties, clean house, run the kids taxi, bring home the bacon, fry it up in a pan and never let him forget he's a man. haha
Gentle Hugs,
Stacey
Hey Stacy.
I am glad i found this website as i am feeling a bit lost. My legs are the wrost affected, i can barley walk with the pain i experince and when i do i use a walking stick, my hips are the worst and i am now expeincing pain in my wrists.
Thank you for the suggestion of setting targets, at the moment i am just going through each day just hoping tomorrow will be better, but i think having goals can help.
Im trying not to let it take over my life as i am not the type of person to stay still, but unfortunatly the job i was doing (a care assaint) meant i was on my feet all day caring for others, and its impossible for me to continue that now.
Thank you for your advice
Fae
Sorry ot hear that. I struggled with it for years it was hard to wrap my hed around the fact. I went to therapy to get my head to where i can deal with it. The one thing I kept saaying to myself is this will not kill me I am not going to die from having Fybro. Pain is going to be there but it depends on wither I am going to let it control my life. Have a great doc who listens and make them listen I had Drs. that thought I was crazy you are not. The pain is real. Plus be an advicate for yourself. Hope this helps a positive attitude can help but I know its hard sometimes.
Thank you for your advice
Fae
Fae,
Try a heating blanket on your legs when you are resting. That is what I do and when I get back up I can move so much better. Unless heat makes your symptoms worse. Its easy to let it take over your life and then we get down and depressed thinking we have to stop doing all those things we love doing. Could you maybe do care assisting that isn't so demanding? I know some people pay for care assistants for loved ones in nursing homes. It gives the patient someone to talk to and to make sure they are being taken care of but the nursing aids and nurses do all the actual "work" you just make sure its getting done for the families that can't be at the nursing home 24/7. Just a thought.
Gentle Hugs to you and don't let it get you down. We can all beat this!
Stacey
Hi Fae:
I am so sorry that you have joined our club, but I'm that you made your way here. Hopefully you will be able to find some support. I've been sharing my new blog regarding Fibro, CFS, and Costo with others who may find support from the pages: dancingintherain-always.blogspot.com. It is full of very honest reflections regarding the emotional and physical challenges that I have faced.
Hoping you find this a restful day,
DancingInTheRain.Always
I was also recently diagnosed and am having the same trouble you are. Everyday I feel something different (hopeful, lost, confused, etc). I don't have any answers for you, but if you need someone to talk to, I am here. Maybe we can help each other :)
Bethany
Hi Bethany:
I agree, let's support each other; this is a tough process that we are experiencing. Also, I've started a blog, with very honest reflections about the emotions and experience of this process, you may find it helpful: dancingintherain-always.blogspot.com
Take care,
Dancingintherain.always
Hey Everybody, Thank you for all your kind words of support and all your advice, it has been very helpful and made me realise there can be ways around having fibro
i hope you are all well today
Fae
Hi Fae,
I can totally relate. I was just diagnosed late last year and working at accepting it is true. At first I was relieved because I was afraid I had lupus or MS. Now I am working at learning on how to deal with the symptoms. I feel I am taking too many meds and hope that with time I can wean myself off of them by educating myself about the disease and how to diminish flares. I am finding this site very helpful and other members extremely supportive and empathetic. I continue to work, exercise and enjoy life. I have certainly diminished my activity level slowly over the last year and thought it was just because I was busy and losing motivation with many stressors going on in my life. But now I realize it was fibromyalgia slowly taking its grip. At times, I still worry that the symptoms are something life threatening and it is just a matter of time before my true diagnosis is discovered. However my symptoms are classic fibromyalgia and reading other posts on this site affirms that for me. I guess like many diseases the shock of initial diagnosis results in grieving for the loss of control which we thought we had, accepting what ever limitations it brings, and then moving on to make the most of what life has in store for us. The serenity prayer is a good one. "God grant me the serenity to accept things I can not change, and the courage to change the things I can". I am grateful for this site and just realizing how helpful it is to talk about my feelings about this diagnosis. I joined the site about a month ago and just posted for the first time two days ago and the responses were so helpful and I eagerly checked my email to see what further words of wisdom I received. Good luck to you on this journey - you are not alone.