Hi all, I am Nat, and I guess I have had fibromyalgia for at least ten years, but maybe longer. I never thought that all my symptoms were related. I was diagnosed at the end of July this year by a GP, but I didn't really want to accept it, even though I suspected it for months before that, based on research and knowing a few people who suffer with it. I went to a rheumatologitst this past September hoping he would tell me something else, but it was the same dx.
So I am working on trying to accept it, as it has really changed my life since everything started progressing. I know some say it does not progress or get worse, just ebbs and flows, but I am sure it does get worse, because I never had all the symptoms all at once, this bad and for this long, until a little over a year ago. I used to be able to swallow a pill or two for what bothered me the most, getting some relief, and just keep pushing through the rest of the issues. Since my symptoms were so sporadic I never figured they were connected.
Anyway, I am just looking to connect with others who are dealing with it and hoping that maybe I can be a blessing to others who need it. Not a doctor, not an expert, but love to lend support. Great to be here!
Hi Nat and welcome! I'm sorry that you have to join the "Hotel Fibro" but we're here for you!
What stood out for me in your story is how you tried to "push through" your fibro issues until they became unmanageable. That's the way it seems to be for most of us. And, yes, I agree with you, it does seem to be progressive no matter what any medical person says. I was just thinking that very thought as I mentally complained about my shoulders hurting so, which they never used to.
It looks like you have started to put together a team of doctors to treat you, which is good.
This is a great place to come and talk. Or even just read. i think it helps so much to have others who understand your pain and who will listen.
My motto is, "I have Fibromyalgia, But Fibromyalgia Does NOT have Me."
When I wake up every morning after thanking God for another beautiful day, I recite my motto, sometimes over and over, until I believe it enough to receive it. I have Chronic Fibromyalgia with no pain relief for 3 years straight. I fight and you can to. It will not be easy but I will do my best to inspire you in a way that you will dig down deep inside of yourself and pull out your own self motivation that you will use to help you fight your way through these battles. You will not be alone, we all will be here for you but the motivation of help has to come from within YOU.....
The first thing you need to do is to go through your grief/loss period of reality. You have to let go of the old Nat. Easier said than done..... I know I've been there.
I still struggle with some things I miss ....... Privacy, is one of my pet peeves right now.... It sucks but it is my reality......
So! Nat, SMILE, even though you may be in pain; your SMILE could be the Blessing of someone else's day.....
Fibro is a big pain in the arse I tell ya and you know what it may or may not get worse, everyone is different but don't think about what hasn't happened yet. I think once we are diagnosed we feel like things HAVE to change and they don't have to change. Sure physical aspects of our life style changes but not who we are and I had to realize that now 8yrs into this that just because my body is changing does not mean that my personality had to change with it.
Fibro can get you very down and the flare ups can be very painful but, and there is always a BUT. . .we have the power to control it. We can choose the meds to take, the exercises to do. . .the healthy lifestyles to adapt to and learn to live with it comfortably.
It is so hard. .. I can't nor will I lie and say that it isn't. I am only 30 and I had to have a hysterectomy at 24 from this crap, I can't wear heels and dress up like I want to, I have to constantly wear these stupid arm splints and braces from the weak wrists, I can't do a lot of things I used to but what i discovered is that i can Now do a lot of new things that i never thought about doing.
My attitude towards fibro is this. . .our ancestors, our human ancestors who lived very short or long lives and throughout those lives they suffered from pains unknown to them without doctors to diagnose them but they survived. They hunted and mated and traveled to new places. We, humans, can take more pain than we think we can and the proof is in our ancestors, those who lived long lives and those who fought with illnesses in their short lives. I think that if my ancestors did it, then so can I and I know they didn't have all the medicines and machinery and doctors that we do now. If you wanna know how to live with this. .. take a look at our history and see the strong human beings who lived before us. . .it inspires me to fight hard like they all did. We have to show the next generation of those chosen to bear the pains of any disease, condition or what have you that we do not give in to what we are physically dealing with. We can't. . .we have a history of being far stronger than that.
I know you will be just fine. This is a huge group of ppl with all kinds of remedies and advice to give.
WOW, you go, Mo! I LOVE this argument! What a great way to put it and you're SO right! Even my grandmother was one heck of a fighter. She got the 1918 influenza that killed some 30 million and somehow survived it (plus many other things.) I never thought of fighting fibro in the light of drawing upon the strength upon our ancestors but you are exactly right.
Welcome Nat, so glad you found us and jumped right in and introduced yourself! We are one strong group, you will find great information, inspiration and a place to just 'vent'!
You are so right, it is hard to put all of these symptoms together and believe that such a wide array of problems and symptoms could be related, and come as a one word diagnosis. It is probably the most controversial diagnosis on the planet at present!
So good to have you with us, there is strength in numbers!
I'm a little surprised that doctors are saying it doesn't progress. I guess I was lucky enough that I was diagnosed early. I started with mostly numbness in the face that I thought was a stroke. I didn't even really find my doctors, they found me in the ICU stroke ward. I was fortunate to have my diagnosis suspected after a few days. They began treating me while still ruling other things out. But the neuerological and pain management team I had turned out to be so experienced, that they had even seen that although my symptoms were not as typical as most, they felt it was fibromyalgia.
One of the interesting things you said was doctors say it won't progress. I had the opposite experience. My pain management doctor told me after a while that since it wasn't going away it would in fact progress and even though I felt ok on my medicine at the time, he insisted on trying various treatments. He was hoping he could break the pain cycle and that would rid me of symptoms but it didn't work. However, he continued trying things because he felt that when it does get worse, he wanted me to have options. Well luckily, he did all this while I still had decent insurance. Now that I'm 100% out of pocket for specialists until I reach a high deductable (then it will be covered 80%), I was able to leave pain management and get meds from PCP. But knowing that we found that botox may be helpful if it gets unbearable is a great comfort to me.
Keep searching for that great medical team with experience. They are out there.
What you're going through is not uncommon - I went through a similar process. It took many years, visits to several specialists, lab tests, etc. to get to my diagnosis. When I finally came to terms with it I felt so frustrated and defeated. It does get better though - once you get to acceptance you'll change your focus to trying to improve your quality of life. You are in the right place to get support, find coping strategies, and compare treatment options. Best wishes to you on your journey!
Well, you have found the correct place. We will be here for you and help you anyway we can. You give us any new treatments you discover as well. We are all here to help eachother. Hate you have to go through this.
Are you working? Getting any enjoyment out of life. I seem to be sleeping my life away. Welcome.
Welcome to the group! I'm new on here too.. and finding it to have a lot of support, nice people and new information..
I have had this for 22 years now.. and so for me... I can tell you that is has NOT progressed. Waxes and wanes to be sure.. It was worse when i was newly diagnosed... at your exact age: 30. It took time to get the right program for me: the combo of meds, and lots of quality sleep. Being really busy, too didn't help.. had my two kids and never got good sleep - make it pretty bad. (until I finally got help then I started a steady climb up )
Yes, it takes time to accept and modify your life. It's the same stages as grief... shock, denial, anger, bargaining and finally acceptance. and maybe all of them at the same time!
For me.. when I was able to really balance EVERYTHING... my symptoms are much more in control. I use heat and my massage chair every morning/day and HAVE to move my body ... or else if I lay around too much it gets WORSE.
Well... I will pray for you and hope you have a good Dr. who understands Fibro. If not... find one ! They are out there.
Acceptance is all part of the grieving process that goes with having a chronic illness, as someone said earlier. Our lives are forever changed by things we can no longer do, places we can't go, people we lose contact with... and that's a very hard thing to accept.
Everyone goes through this in some form. I was diagnosed almost 20 years ago, and I was in denial for the first 10 years--even though I was working for my Rheumatologist, and saw the symptoms of FMS patients every day, I thought "there is no way I have that!". Now I realize I have had symptoms since childhood, and that my mother also had it, but undiagnosed.
I don't feel it so much progresses, but that we have stronger flare-ups sometimes. I think that it "changes", that we can develop different issues. Also that we have had some symptoms all along, but never paid attention to them until we got the diagnosis, and started looking for them. But I think it can feel like it IS progressing, when you add in the normal aches and pains we get as we age.
It will be very helpful having friends who understand, and by researching it you are already being proactive to try to keep everything under control. Come here and chat with us anytime, we're always here to commiserate with you!
Hello Nat and welcome. i know u will find many friends and support on this page. for me in the beginning exceptance was not an issue only because i was looking for a reason for how i felt i also didnt know how this disease would change my life. i have had to except alot since then.
i wonder if the drs say it doesnt progress cause it doesnt do damage. from the stories and post i have read it does progress in that new symptoms do appear. i know that may not b what u want to hear sorry. but i do feel that while we do get more symptoms there r ways to help us not hurt so much. there r so many post on how to help different pains. since everyone is different not everything works the same. i hope u can find answers and ways to help with your fibro symptoms.
I LOVE your motto ! thanks for sharing it! I'm a new member here (about 2 weeks) although I've had Fibromyalgia for over 20 years. Up until 2 weeks ago, I've never joined any support groups for this; but I'm so thankful for this website!
I also am glad to see that you mentioned God and your prayer/gratitude each day. I haven't seen anyone else talk about their faith (yet) but I AM new here. My faith is the cornerstone of my life; could NOT get through this illness like I do without it.
Hope you're having an awesome Sunday.. it's really beautiful today here in Pittsburgh!
Thank you, Gianna, for the welcome and inspiration. I have to tell myself that I have never been alone no matter what I go through, that my Father and Friend is always with me, so I can always look to Him for strength to keep going.
But some days, I wonder how to make it easier. I am thankful for finding sites like this, because they help.
Hi, YinYan, it's rare these days to read others talking about how their faith keeps them going. I appreciate that when I see it, too, because it seems to be all I have some days. I feel encouraged by reading about others' faith, and reminded of all I do have and all I still can do. It's not over, for any of us!