About one year into diagnosis and having trouble coping

Hello there. I am new here. I was looking for a place to vent and get information and help managing my Fibromyalgia. I was first thought to have MS a couple of years ago when I started getting chronic neck and shoulder pains. After a few years of MRI's, spinal tap, and EMG's. They did find some lesions in my neck etc., but I got a second opinion and was later diagnosed with Fibromyalgia. I do feel comfortable with this diagnosis as when I researched it I realized that it sounded finally like exactly what I have.

While I am relieved to finally have a diagnosis and a treatment plan I still feel don't feel like I am on a good path to getting better. I am a caregiver...I manage a home healthcare agency,and a mother of three. Lately I have been feeling really discouraged because all this new pain keeps coming up on top of my neck and shoulder flares and at times I just feel hopeless and helpless.

I try to express my pain to my spouse, and my doctor but I don't think anyone quite understands how I feel. My spouse is a very loving and caring man, and definately helps me pick up the slack, but I feel like I complain too much. One day my neck is burning, next the muscles in my arms are burning, and the next I am getting shooting pains in both syatic nerves. I feel like nobody really takes me seriously cause it's so often a changing problem and a changing pain. I always have chronic pain in my neck, but lately it's just been getting worse other places and I just feel so discouraged. My physical therapist gets to work on one problem and is all confused when I tell him the next time that the majority of the pain is all together in a different place.

I think just talking to other people that experience some of the same things may help me. I really want to keep on working and doing my motherly duties. I'm afraid if things don't get better soon that I will lose my position in my job and income that I worked tirelessly for years to get. I feel so guilty sometimes. When I am not at work I am nearly always laying down trying to get sleep that rarely ever comes. I get so frustrated when I can't get comfortable and it makes my anxiety through the roof.

I used to be such a better mother and housekeeper then I am now. My sons are 16,15,11 and they are really loving understanding children. They help me and understand my pain and don't want me to feel guilty when I am down. I still can't help but feel guilty that I have no energy to do the things and be the person that I once was for them. That is the hardest part for me. I still try to keep things clean everyday and make sure there is a good meal when they get home from school....but it's a struggle and it never used to be.

I'd just like some advice from someone that has dealt with this longer and maybe some help about how you cope and get through the day and all the duties of life with this disorder.

Aww just read ur story and my heart goes out to you…I am also new on here and although not yet diagosed have suffered a couple of year of bad fatigue…body aches and pain all over.many symptoms…I understand your situation…I am a physical therapist in home care and have a family…I too feel guilty…I’ve gradually cut out more and more of what used to be easy…baking…thorough housekeeping… I’m finally not blaming myself…trying not to be angry…I listen to christian contemporary radio a lot to do my best to keep a positive attitude over the pain…sounds like you are blessed with a loving family…your love for them and just doing what u can each day I’m sure makes God smile…best wishes and gentle hugs

Hi Taerlyn,

Welcome to the fibro group. Like you, we all suffer from fibro and try to cope despite all of the pain. Your story is identical to most of ours. We work, have a home life, but are disrupted from our tasks from the terrible pain we suffer. We feel guilty that we can't keep up from the pain. We go to a slew of doctors and are given prescription after prescription...and, as you point out, the pains keep changing locations! We make an appointment for one ailment only for it to fade and be replaced by another one.

Unfortunately, spreading yourself thin is one way to make the fibro intensify. I can't emphasize strongly enough how important it is for you to not do this, as well as to rest as often as you can, and to try and reduce as much stress from your life as you can. Many of us (myself included) can attest to you that we pushed the work envelope to the limit and ended up with a hideous case of fibro that has only become worse in time. Please learn from our mistakes and slow down.

Your two oldest sons are at an age where they could help with housework and cooking functions, to keep you from tipping over the edge. You can't be the person you were before fibro, but with some cooperation from your family, you can try to keep yourself at the place you are now with your fibro.

I would also suggest that you assess your work situation. Most of us cannot cope at work due to the fibro and either quit or work part-time. Most of us have reluctantly left very good jobs. But it's leave (or reduce our hours) or end up with many more fibro symptoms.

I do take you seriously and completely understand your illness. Unfortunately, only another fibro sufferer truly understands what you are going through. If you think about it, would YOU understand it if it weren't you but a friend who had it? Truthfully, I still don't really understand this illness. For instance, if fibro is from overactive pain signals in our central nervous system, then why do we end up with ailments like tennis elbow or irritable bowel syndrome? Why do many of us end up with autoimmune illnesses? Why do the pains keep traveling around our body, like a three-ring circus? See, this illness has many mysterious components to it.

Please feel free to join us in our discussions. They help so much with coming to terms with being ill, as well as BEING BELIEVED ABOUT BEING ILL. Plus there are many wonderful people on here who will do their best to guide you along in your fibro journey.

Warm hugs to you,


Yeah, I totally understand, looking back, I feel like I've had Fibro for about 4-5 years, right before I got pregnant with my only daughter. And thought since I am overweight, thats why I'm in stiff, or just getting older (haha I'm only 35) so everyone feels like this with age, and we all just don't talk about it ... But after a rock bottom 3 weeks of crazy, I went to a psychiatrist to listen to me thoroughly, since my PCP never does that! And he diagnosed me right away. I am so thankful for him. I dont have insurance, and they are expensive, but worth it cause you have their full attention for a whole 1 hr 1 1/2 etc. I take Cymbalta, and it took me from a 3 to a 6. And in addition I take pain killers for work mostly, I am a server and a house cleaner. And a mom of a 3yo girl, so I'm pretty physical some days, so I have to stay toughl:>