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.
Welcome, let me just say you have come to the right place, your story is so familiar, I remember being at that time in my life, feeling exactly what you are saying … Oh do I understand the guilt, and the feeling of why am I struggling to do what always came easy… You are at the beginning of my story … I worked full time… Took care of the house a teenage son and was the glue that held everything togeather for everyone. You are not alone…!!!
If I knew then, what I know now… I would say… You have to start putting yourself first, I didn’t , I kept pushing & pushing till it all just calapsed … That was this year & I struggled for 2 years prior to this , the good new is you are not alone, and you will figure it all out, it takes time, to understand limitations, when to say NO, and how to prepare for things you really want to do.
The acceptance and saying no were the two hardest things for me. As I was always on the go, did everything I wanted and never had to say No I can’t do that !! I
Listen to your body… Slow down, slow down, my dad used to say that to me, and he died a year an half ago and I have finally slowed down,
I remember thinking I have worked so hard to get to the point I am at, finally making good money, & I am a single mother, no financial support from anyone. So I really needed to work, but I didn’t slow down, I just pushed my self to shear exhaustion, 6 months out of work I’m still tired,
You sound like a wonderful mother, and you are so blessed to have three sons, you have to let go of the guilt, you just love those boys, dirty house & all & get them to help, best lesson for them, is to learn how to help take care of business !!! When my son was 16 I didn’t want him to worry about anything, especially me, so I never shared my struggle w him, until this year, I wish I had sooner
Welcome & know you are not alone, my worse pain moves all over also I’m pretty sure that’s common
Hi Taerlyn and welcome to the site. You will find that every member here can relate intimately with what you are saying because it is also our story. The roaming pain, the fatigue, the loss of sleep, the inability to keep up at work and at home...and then still more pain on top of it. Yes, this is what fibromyalgia is about. I truly wish I could tell you differently but you are a classic case of it. And although doctors will either tell you it is not progressive or they don't know, it seems to me from all that is written here as well as my own experience that it surely is progressive.
I think it's very important for you to be receiving proper medications so you can hopefully sleep at night and also be in less pain. unfortunately, it can take a while to hopefully find the right balance. But one very important thing about fibro - little sleep = more fibro. It's like a vicious cycle. Oh yeah, and it's hard to sleep because of the fibro pain.
You are welcome to come here to vent to your heart's content because we all understand you. We also want to get well but don't know how. Right now there just isn't an answer for us, as fibro is not well understood. But we support one another here because we know what it's like to feel alone and frustrated.
You sound like you are blessed with a good spouse and children. They don't understand but still love you and that's important. You definitely learn to count your blessings with fibro.
Thank you so much for understanding. Just knowing that someone does makes a big difference. I know that it's getting pretty bad and that eventually I am going to have to make some tough decisions about my work. My branch of the agency that I manage specializes in taking care of quadriplegic patients. It is a very beneficial job, but my doctors have been telling me the past few years that I should consider the fact that I may have to change jobs or not work at some point all together. It's hard as I have grown so attached to my clients, and after my divorce I worked as a CNA for 11 years before I got the opportunity at double the salary and more office work and less physical after so many years of working 24 hour more physical shifts.
I have never gotten much help from the biological father of my children. He was a abuser and it took a lot of strength to leave him and be able to support my kids. I haven't even told him about my disorder because I don't think it would spark much compassion in him anyways. Nothing else ever did. I have always prided myself on being strong and independent and providing for my children on my own despite all of our many obstacles. My children are great. They never give me any problems or grief when I tell them that I have to lay down or that I am in pain. They worry about the amount of medication I have to take sometimes cause I never used to take any. My bedroom has turned into my dungeon lately. My older ones help my younger one make sandwiches and after school snacks and stuff and do the dishes if I am having a really bad day. I really try to pick things up and make them meals whenever I can, and my fiance does help me with all of that as well. He is a really exceptional man and I am lucky to have found him.
I am fearful that one day I will just not be able to get up and go to work and it will all be over. I have heard the horror stories of people having to wait for years to be able to get SSDI. Im scared it will get so bad that I will miss work and be unable to pay some bills etc. and lose all I worked so hard to get. I finally got us out of damn near poverty for half the kids lives and into middle class and I am fearful of going backwards.
Im sure all this sounds petty compared to a lot of peoples stories on here. I just am having a hard time excepting the enormous change in my condition. It started with what felt like pinched nerves in my neck and just escalated into so many different things. I just cry and get frustrated when something new happens. I can't seem to get my anxiety under control, and it takes a lot to get the pain somewhat under control.
Sometimes I just imagine that this all can't be real and one day I will wake up without having to grab 3 kinds of meds just to get out of bed. I am having a extremely hard time trying to hide it from people at work cause my neck is always hurting and I am grabbing at it, and I get shooting pains in my arms and legs that are pretty obvious. SO very very tired all the time. I feel like I spend half my life in bed but only get like 2-3 hours of actual sleep at night. Sometimes I don't even know if I am really sleeping at all. I look like a hot mess and I used to take a lot of care with my appearance..now Im lucky if I can make it to the shower each day.
I feel frustrated that I am not having the same great effects from lyrica and cymbalta like some people seem to. I believe that the Lyrica and Tramadol do help so that I can at least get up and do the bear minimum. I feel frustrated cause I don't see or hear of many other combinations of things that will make it better. I have tried Savella too, only to get night terrors and psychotic thoughts from it and it scared the crap out of me and made the sleeplessness worse.
Sorry for the novel...this is really the first time/place I ever found so much information on my disorder and people that go through the same things. Thank you for taking the time to care and read about my situation.
I cannot emphasize strongly enough how much i agree with Dee on learning to say no, not pushing yourself and putting yourself first. Those who don't end up with a ramped up case of fibro. Dee and i both know this personally. Don't do this to yourself. Take very good care of yourself now so you don't send your fibro spiraling out of control.
Thank you all for taking the time to hear my vent = ). Though my doctor seems nice and willing to give me meds for my condition he doesn't do much in the way of explaining anything to me. Basically he gives me 6 months of refills and calls in steroids when it gets excruciating and about 15 mins of his time every few months. I went to PT a few weeks ago I was having a terrible headache from the tension in my neck for about a week. A new therapist had me lay down and did some technique by touching my head in certain places and BAM the headache let up! I thought it was some kind of miracle! Then he started massaging the front of my neck and it made that burning sensation shoot down my arm. I asked him how he was doing these things and he said it was some kind of therapy with Fibro tender points. I nearly cried. In all this time, and all these doctors, and all these therapists, and all these tests, and this was the first person I had met that seemed to actually know real things about Fibro and valid things about my pain. I mean my doctor just told me I had it after every other test known to man for MS didn't come back as they expected. I did have a lesion in my neck but none in my brain so they came to the conclusion after treating me for MS for two years that I didn't even have it! Needless to say when I left the headache returned and the rest of the therapy didn't seem to help much, but just that bit of understanding and confirmation that he knew exactly what it was and what I was talking about felt better then anything I had felt in a long time. Then the next time I went in he was gone and now im stuck with another person that wants to put my head in a vice which just creates more flares so I won't be going back for that. I have been through all that before.
But I thank you all and I am really appreciative to have found this site and so many people that seem to have the same story. I think this will be very beneficial to me as I learn and try new things to try to make this disorder/life more manageable...and a place to vent when I can't sleep!
Also I am going to talk to my doctor about the sleep and anxiety thing more. I keep telling myself I don't want anymore meds cause it scares me, but I know the worst of it comes from lack of sleep.
You have found a great group, support, understanding and info are great here.
May I ask if you are seeing a Rheumatologist? You care for so many, it is my opinion that these are the best Drs to care for us. I know, I have been through 3 brain MRI's looking for MS and SLE, I passed on the spinal tap, as I have Spondylitis and Stenosis from Psoriatic Arthritis. No one could diagnose that but a Rheumatologist, the second one in fact.
You can use the search engine at the top left of the page for research, to go to any subject and pull up all the discussions of the past, it is full of valuable information.
I urge you to know as much about your family history as you can as far as autoimmune diseases, this is one of the first things a Rheumatologist will want to know, as they are genetic diseases.
Hi, I am amazed at what that PT did on you as far as fibro & treatment for pressure points, was it message?
You also said when you went back he was gone, gone where ? As in left to work somewhere diff? I would get his name & find out where he went… It’s so hard to find someone like that … I’m thinking he is a treasure & future treatment maybe needed. I just know when you find someone that know about fibro, & how to treat it… Well let’s say he sounds like a keeper !!!
Hope you are taking care of your self !!!