One year in and having a hard time coping..could use some advice

General
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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.

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this turned into a very long response. welcome to the site and feel free to vent we do at some time or another. we vent to each other cause no one knows our pain like those who suffer with it

i am not a mother but a nanny so i kinda know what struggles a mother has. i am not currently working but i have in the past had to have dinner ready for families so i know how tough that can be. at my house everyone is so busy that we offen just order dinner or get fast food. its rare that a meal is made.

i can understand u wanting to have dinner for 3 growing boys and i know how they can eat too lol i have several nephews about those ages. the one thing i can suggest for dinners is get a crock pot if u dont have one. there is this one cook book for crock pots that had a section called 5 ingredients. it was great cause things were very easy to make. but u can throw a roast in and the have frozen veggies just for roast. put in the meat frozen veggies the roast packet of spices and some water and there u have a great healthy dinner.i do however recomend adding some potatoes there wise there r not many. the box dinners at the store r great too. everything u need is in one i would say to alsways get 2 boxs though. there is one that is turkey and stuffing that i love. these box meals only take a few minutes to prep and then u throw them in the oven.

i know your boys r in school and most likley have homework and projects but just cause they r boys doesnt mean they shouldnt start to learn how to cook. i would start having them help so that if there is a night u just cant cook they can. my best friends kids can make chicken,pork choops, and steak usuing the broiler setting on the oven. somehow they usually mess up pasta not really sure how but they do. the oldest even knows how to make homemade mashed potatoes. my friend has lupus and its hard for her to make dinner so the kids help.

as far as the house maybe get a maid to come in every 2 weeks to do the deep cleaning of the bathrooms and such. if u can afford it its something i think would really help. i also use alot of the products that come as wipes that way i dont have to carry the ceaning product and paper towels and rags with me.

as far as work maybe try to cut back your hours so that u r not so overwhelemed and u will have more time to rest. i know someone on here goes into work at 10am instead of 8am. if u r having trouble sleeping u need to let your dr know and tell your dr why u think u r not sleeeping like pain is keep u up for example. we all struggle with sleep and there r lots of meds in different classes that can help but it helps if u know what the problem is. i know i have bad spasms so i need something to relax me. for some it could be they r in too much pain. know the cause is the first step in getting the right treatment. if your dr isnt helping u find one who will.

good luck gentle hugs to u