I myself do not know what the stages are but the first stage I experienced was RELIEF...I finally had a diagnoses and I was not dying. Next came DISCOVERY...I wanted to know everything about my condition.(which the information is limited). Next came FIGHT, Maybe discovery and fight came at the same time...fighting to keep my life the same. to do everything I can to make me better...SUPPORT I began seeking people to share my journey with.I believe now I have entered into the ANGER stage... Realizing I cannot change it... I guess next would be ACCEPTANCE....while I accept that I have fibro. I do not believe I am at that stage just yet...maybe I am still in the other stages as well.. and maybe their are stages I am missing...
How has your Journey gone so far? How far have you come? Share with me how you have gone through the stages...maybe your stages are different than mine.
I've totally gone through the relief stage! when I first started to get ill I thought I had some sort of brain tumor or something, I have no idea how that logically explained any of my symptoms, but when you're 14 you tend to imagine all sorts of things!
Discovery is something I've pretty much avoided, I mean I try to learn what my boundaries are, but I think I'm still in denial, I'm still finding it hard to admit and accept that I actually classify as disabled... I am trying to let my pride go and actually seek support, but I'm finding it so hard to admit that I need it. there have been so many healthy people who advise me to exercise more, and eat healthy, or go vegan or some other such crazy thing... (not that vegan is crazy) but they often don't realize that a sudden dietary change can be a terrible thing for someone with Fibro!
I am not sure if I'm at a fight stage or ever have been... My emotions are confused and think I might go through each stage everyday. I try not to claim this monster which is living in my head, and often imagine just somehow scooping out the pain, as childish as that seems sometimes imagination is all that keeps me going.
I'll join you in the anger stage right now though I think... maybe we can imagine a killing spree together!
Great question. I think I am still in the “disbelief” stage. I’ve known since I was a child that something was not right. I was told eight years ago that I probably had fibro and lost my health insurance immediately after. I did not know what fibro was until I was diagnosed with it again several months ago. Once I started reading about it, I couldn’t believe it. It explained my life. I wasn’t crazy! Total relief stage. Then I think I was a little scared for a while. How bad can this get? What is going to happen to me? I am angry now about it but mostly I cannot believe that this is going to be my life forever. The pain and fatigue is so bad that it shocks me and I think “this cannot be real”. I always thought that one day I would get a real diagnosis of what was wrong, get on some meds and feel like my old self. Never did I think I had something that cannot be controlled or fixed. Hopefully next is acceptance for me also. Right now I don’t see how anyone can accept this.
Best wishes,
Melyn
Wow, reading this makes me emotional, I am glad to know what I have, still trying to be the old me and do everything. Hoping I will figure out way to work and not be in to much pain. I definitely haven’t accepted this, my future is so unknown. This site helps so much!
I have gone thru all of these. Right now I would say I am at the Frustration stage. Frustrated that my body is not letting me do what my heart wants to do. I alternate between that and the "Damn this Fibro, I am going to do what I want anyway." Of course the moment I try to do something I shouldn't my body rebels and it is back to reality. My brain has accepted the disease but not my heart.
You hit the nail on the head avenk... skipping discovery and straight to mad...and yes being furious. I have tried to hang onto the way things were... but I also know that things were changing all along!!! Slowly it crept into my life...it started when I was a teen...but I didn't know it...I see it now. So it didn't just hit me one day... it has been festering until it came to a head.
I was seeking answers when I found this group. I am thankful I found all of you!!!!
It's been around 22 years since started. So have been though all states. Discovery was by far the worst for me. The way I felt I did not think I would live this long and only prayed that I'd be old enough to be around to see my kids through their early years 18ish and that I had everything laid out for them, college, etc. Now the rest of the stages I feel like I float between them all the time. Except I think during my "first" discovery phase it was longer, but now I realize that will continue and really hope so because the more we learn the better off we are for ourselves, for our families, and others that we can help with the same DD. My fight stage was really before I was diagnosed as I mentioned earlier. But it is still a daily battle; but isn't life a daily battle. Ours just a little more severe. Acceptance was different for me, at least in the sense I will never give up fighting and won't accept this DD will keep me down. Right now my acceptance stage is take me places due to co-morbid diseases. Heart disease, Liver disease, severe Osteoarthritis, severe Osteoporosis. No I am dealing with two bad discs in my neck, outcome does not look great. Still in the discovery state in that disease, do I want to chance epidurals in that sensitive area or should I go right away and have neck surgery. I just don't know. i am seeing a therapist, life coach, whatever you want to call her, to help me make those decisions. I have my MRI's know how bad it is, now starting the search for the best procedures to have and where? I had to stop taking Ultram, which I took for 18 years and it worked with the fibro pain. But it trashed my liver, at least I think it did. I am now taking Buprenorphine and it has help me more with the neck pain than anything. Plus it works for 'my" fibro I emphasize mine because not all drugs are for everyone. But I have decided over many years of researching, trial and error , on Buprenorphine. Yes it is a narcotic but it works, It made a little more sleepy at first, which is not a bad thing if I am not driving. But no other problems with it. And still have plenty of room to increase my does. If I can get another almost 20 years out of it as I did ultram, I i will be very happy. Again it's easier on my liver as it is sublingual. tried the pain patch, butrans but did not work. I think it is mixed with the drug that blocks the effect and used more for those detoxing. So my next battle after my neck is my liver. Still in stage 1 of liver disease. I have NASH, Non Alcoholic Steohepatitis, which is non viral and had a clean liver ultrasound that did show NASH but no Cirrohsis. which is good. my liver enzymes have really dropped since on a good supplement plan for the liver and doing a liver flush and no drinking. Yes I miss having a glass of wine, but I am better off without it. Just lost my Father 3 months ago to liver cancer, and my Mom preceded him 8 years ago with Liver Cancer. So have to watch it. Even though my doc says liver cancer is not genetic I think liver disease is and that being NASH. They did not know much about NASH a few years ago.
Anyways as you can see I am going through the stages again with other diseases and am GOING to bounce back from those new diseases also.
I purposesly did not read anyone eles's reply to this thread before I wrote mine as I did not want to be swayed by others.
now I will read the others.
Everyone enjoy the rest of the weekend, and the week to come.
Great question. I was diagnosed in 2008. I did know someone who had/has fibromyalgia. She takes an Advil when she feels achy and that's it. Since that was all I knew that is how I thought it would be for me . So I floated along for a bit, not long, and I started getting worse then before I knew it, I was much worse. It is a slippery slope. Then the docs are telling me to apply for SSD. My mind was whirling. I could not believe what was hAppening to me. At point I did not even think about stages. Spring of 2013, it really hit me that this is my life for the rest of my life. I went thru a period of grieving who I once was and trying to accept that I would never be that person again. Just this past May I slipped downhill again. Again I have made drastic changes in my life to try to bounce back. This is all happening under my Des supervision. Now I want to say that I have very strong.faith and that has gotten me thru when nothinng else could. Do I get angry, yes,I am human.This has changed my life completely. I won.t ever give up! I hope this makes sense!
I, like others on here, got a diagnosis about 10 years ago. They gave me Celebrex, flexeril and fioricet. I took them for about 6 months and then stopped. Mostly because I lost my insurance, but also because I felt better. Then, I just basically forgot about the diagnosis. Changed my diet some to get rid of most of the processed stuff, started eating better, etc. Went along pretty good until about a year ago. Then my hips really started hurting...then I fell and my knees started hurting, my ankles and feet...then my shoulders and neck. I have an old back injury and I thought that was the cause, (I had forgotten about the Fibro diagnosis, remember). And then the fatigue. Oh, goodness.....that fatigue. So, I limped through living on Advil and gritting it out through the pain.
About 2 months ago, it was an "Aha!" moment. Oh, yeah - I remember now, I did get that Fibro diagnosis from the doc - wonder what that's about. OMG - so, I am making necessary changes in diet and routine. Started taking supplements - Vitamin B12 is amazing for me. I now have energy to go through the day, my joints are better and the "fog" is better. I also take another joint supplement. I am not saying this is for everyone or even for anyone else, but it is working for me. But it is complicated, and shopping at the grocery store now takes 2x longer because of the need for label reading.
So, I guess I am more in a discovery and fight stage than anything else. I will also admit to some denial, because I am still trying to find my "limit" on things. Favorite foods, mostly :P
I would love to discuss different foods and such, supplements, etc with anyone. (((((Hugs)))))
I wish you the best of luck, and thank you for sharing
Where's the OSTRICH phase? The I'm-sticking-my-head-in-the-sand-so-I-can't-hear-you stage, the I-can-power-through-this stage, the if-I-just-get-a-little-more-sleep/weigh-less/eat-better-this will go away stage? That's where I'm at... not that I'm losing weight or eating better... and the sleep thing has yet to work, but I'm still in denial. This can't possibly be another life-long, no-cure, no-one-can-see illness. "God" would never add Fibro to my plate to complement the degenerative bone disease, chronic severe depression, bi-polar disorder, and spinal stenosis. "He" would know better, so no way, no how do I have Fibro.
So what if my symptoms fit? How much does that doctor REALLY know... because there's knowing something and then there is taking someone else's word for it - which is what most people do, right? I mean, he says it Fibro because someone else told him that my symptoms meant Fibro. And THAT person who told my doctor that was told by someone else and so one until you get back to some researcher... Am I the only one who remembers Telephone? You start off with one sentence and by the time it gets back to you, it isn't remotely what it started as... that's totally applicable here, right?
I hate this diagnosis, so until it hurts really bad and I can't ignore it, I pretend the doctors just whispered to each other rather than wrote, published, and read scientific articles that lead a trained professional to a reasonable conclusion.
So, that's where I'm at... the kicker is, because I have difficulty accepting it myself, my husband has difficulty managing the symptoms or me when I'm symptomatic.
Yea i think mine is lymes,but can't prove it..Its been on the news more than a few times that a lot of fibro patients were misdiagnosed because so few doctors even understand just how far lymes has spread,all over the world now..Started in north eastern u.s.
I used to know someone in England who had Fibromyalgia , and there they have studied it and broken it into 4 stages of progression . The difference between how it is seen and dealt with is totally different , They also have government benefits for patients to apply for , And they not only get money they get what they would have made if they had not gotten it and was able to work . They also get PA's which are patient assistants who come to their homes everyday and help the patient , help with house cleaning , cooking and if you have school age children you get a free full time nanny . it's pitiful the difference .
I am in the Discovery/Anger phase right now. I want to know as much about this condition as possible. I haven't worked in 2 1/2 years due to the pain and right now the flare ups have me in bed at least 2-3 times a week. I want to know why. I used to be active and energetic. I was heading up art shows, writing for magazines, going out with friends but now, thanks to the Fibro fog, reading and writing is extremely difficult due to concentration issues, I can barely think about art projects and as for going out, well, it takes all my strength to get excited about being with people.
While I'm glad that I finally have a diagnosis, where do I go from here when I'm told there is no cure?
I am in a little of all the stages… relieved I am not dying though I sometimes feel like death, trying to accept it may be with me for awhile, so try to make the most of it, but get angry sometimes mostly at doctors. Lol. And most importantly I continue looking for answers and try to give and receive support.
Defeat. I no longer feel like a superhero fighting my arch nemesis. I feel like I am trapped in a nightmare I can not wake from. It's taking over. I try to keep positive and live my life, but, it is taking the joy out of my favorite things. Defeat.
After the last week and current on going problems from my husbands car accident I am in one hell of a flare along with my arthritis through the roof i am in Hell Stage on the edge of not tolerable.
I think I’m in the better reach out for help stage. Just connecting on this site is making me re-think my days. Whether it’s part arthritis part fibro. I need to tell my doctor. You know I think they already know I’ve got more problems than I let on. I come from a family that doesn’t take care of itself, I better push past that and start a new journey.
After acceptance comes grieving for the
I’ve you have lost. I am at the forever stage and have adjusted my life accordingly. Thankfully I can now do a lot of what I used to do but only for limited times. Humid weather and cold still prompt a minor flare otherwise I am pretty good. It took 12 years to get here with lots of very bad patches and lots of tears. I say never give up !
