When did you accept your diagnosis?

[kait0220]

Hi folks. I need some help (29F). Over the last 18 months I have gone from feeling like a 10 to feeling like a 3. I have been to a dozen doctors, had tons of tests (bloodwork, 5 MRIs, colonoscopy, POTS testing, ENT testing), medication trials with no effects, EVER. All my tests are fine. To all of my doctors, I'm as healthy as can be. But I feel awful, every day. My hands have been in pain every second of every day for over a year. I had to give up all of my hobbies, and even now working on my computer is painful. My rheumatologist can't find anything wrong with my hands except for the pain. MRI was clean. I've been seeing a chiropractor for 6 months for back pain.

I get INSTANTLY fatigued doing anything. I used to be a weight lifter, and now loading the dishwasher completely wipes me out. Simply laughing causes me to cough and choke and get fatigued. I sleep between 12 and 14 hours a day. And it's not just drowsiness - it's severe and instant tiredness. I have to go lay down or else I'll just fall asleep at my desk. A lot of my other symptoms look like fibro - but the pain is not widespread. It's localized to my hands and I guess my back (but the back pain comes from standing up for a few minutes). I also overheat from any activity. It's 64 degrees in my house right now . I was "working" out in the back yard for 10 minutes this weekend and was wearing essentially a bikini level of clothes and STILL sweating like a hog. It was about 75 degrees out. I couldn't even go outside last summer. I can't garden, I can't cook, I can't even walk my dogs for more than a few minutes. My bf and I can't even be intimate because I'll either overheat, be in pain, or what feels like have a heart attack.

My issue is that I cannot accept that "nothing" is wrong with me. The speed at which I declined and the severity of my issues (I am close to having to go on ST disability at work) makes me think that something physically noticeable must be going on. I have a hard time accepting fibro as a diagnosis because it's so arbitrary to diagnosis. My bf even asked if it was somatic symptom disorder and it was "all in my head." This really rude neurologist said "eh you're fine, it's probably just fibro." But I'm not fine. I'm a 29 year old who just two years ago was incredibly active, happy and full of life. Now I feel like I'm 100 years old and I've given up 90% of the things I love. I don't want to just treat the symptoms until I KNOW what's wrong with me. Every time I hear "you test came back fine" I get so frustrated. At this point I'd rather get bad news than no news.

So TLDR, how did you accept your diagnosis? "At what point will you give up [on getting tests and seeing doctors] and just accept it and treat the symptoms?" - My therapist.

 

[sunkacola]

Hi Kait,

Sorry you have to find yourself here, joining the club no one wants to belong to.
The thing is, it's not true that "nothing is wrong with you", so no wonder you cannot seem to accept that. That is not really an issue, it's just rational. If nothing were wrong you would feel fine.

The problem is that if you have FM, there's no way to prove it because the diagnosis is only made by ruling out everything else it could be. You don't have to accept the irrational ("nothing is wrong"), but if you have FM it is in your best interests to accept that something is wrong with you and the something is fibromyalgia.

Many of us here understand how hard it is to accept that. I was always very active, and also a weight lifter, and super strong with endurance that often put companions in the dust. Not so much now. I had to stop lifting entirely which was one of the hardest things for me because I loved it intensely. It was one of my main hobbies. I tried so many times in different ways to go back to it and ultimately had to accept that it is not ever going to happen. But even so I have not sold my weights. (insert eye roll at myself here).

"eh you're fine, it's probably just fibro."............is a contradiction. People with fibro are not fine. They have fibro! And that is not a "just".
Ignorant and/or cruel people like to say it's all in your head or make light of it. I think that is because it's easier for them to think it's nothing or that you are causing it than to accept the fact that this syndrome can actually hit anyone at any stage of their life and bring them down. People are too scared of that, so they like to blame the person with fibro because to them that means it won't happen to them! But, it could.

You can't ever KNOW what is wrong with you if what is wrong is fibro, because there's no test that will come back and say "it's fibromyalgia and here's the proof". All you can do is get all the tests you want or need, and when you are done with that you may simply have to accept that it is fibromyalgia,.

I accepted the diagnosis when I had exhausted everything else and a doctor who had it himself diagnosed me. But true acceptance of what it means to have fibro was hard won and took time.

Fortunately you can actually do more than just treat symptoms. I made a post that is pinned at the top of the General forum that has all my best tried and true advice for things you can do to help yourself. Check it out and see what you think.
I have been where you are. I understand what you are saying, as I felt the same way at first. I am here to support you as are many people here. You are not alone, so hang in there and come here if you need help.

 

[Affinity]

So TLDR, how did you accept your diagnosis? "At what point will you give up [on getting tests and seeing doctors] and just accept it and treat the symptoms?" - My therapist.

I had a therapist say this to me and I got a new therapist. I cannot accept it. I want a solution. My new therapist encourages me to be realistic in what goals I set but she also believes that I can see improvements and I am in fact improving. I refuse to accept I am doomed to live in pain every day for the rest of my life. I am going to keep fighting it.

 

[kait0220]

Affinity - I love your mentality. My therapist is usually so great. She got me through a horrible depression and encourages me to focus on what's happening in the moment instead of worrying about the future. If I feel tired today, take it easy. Accomplish my goals in small, attainable steps. I like that. But I can't stop searching for an answer. The one thing I disagree with her on is this topic. I can't not think about the future. I want to change my career, but if I'm going to keep declining to a point where I can't work full time, why bother? I'm almost 30 with no kids and now I can't plan to start a family, I can't even plan a vacation. I have used the exact same phrase that I feel "doomed to live in pain every day" and although I know that catastrophizing and future telling is bad, it's the only thing inspiring me to keep fighting.

 

[sunkacola]

I had a therapist say this to me and I got a new therapist. I cannot accept it. I want a solution. My new therapist encourages me to be realistic in what goals I set but she also believes that I can see improvements and I am in fact improving. I refuse to accept I am doomed to live in pain every day for the rest of my life. I am going to keep fighting it.

Just to make sure I am clear.....I don't suggest anyone give up or "accept I am doomed to live in pain for the rest of my life". That would definitely not be helpful, and that's not what I am saying......(.just in case you thought I was.)

What I mean by acceptance is that if you spend your energy refusing to accept reality - what actually is happening in the moment, being angry about it, or pretending it doesn't exist, you won't have the energy left to help yourself. There are so many things that a person with FM or other chronic pain conditions can do to help themselves and to feel better. But first you have to accept that you are where you are before you can help yourself.

Think of it this way: Say you are stranded on an island in the ocean. If you spend your time raging about saying "I don't believe I am here, I cannot accept this, I shouldn't be here, why did this happen", you won't have the energy to find food, make a raft, signal for help, and so on. That is the kind of acceptance I am talking about. Acceptance is not apathy. Acceptance is not acquiescence or approval. It's just seeing reality so that you can figure out what to do about it.

I had to accept that I cannot lift weights any more unless I want to put myself into terrible pain for days at a time. If I had not accepted that, I would only have been harming myself, maybe even doing permanent damage. But that doesn't mean I don't still do what I can to help myself improve.

There may never be a solution found. But striving for it is important, and if we don't do what we can then it's unlikely to appear like magic.

I accept that I have fibro. I accept that today I am in pain. And simultaneously I am doing everything I can, each day, to help myself manage this and to feel better. I have improved a great deal since I started taking this approach.

Good for you for doing the same!

 

[Affinity]

Affinity - I love your mentality. My therapist is usually so great. She got me through a horrible depression and encourages me to focus on what's happening in the moment instead of worrying about the future. If I feel tired today, take it easy. Accomplish my goals in small, attainable steps. I like that. But I can't stop searching for an answer. The one thing I disagree with her on is this topic. I can't not think about the future. I want to change my career, but if I'm going to keep declining to a point where I can't work full time, why bother? I'm almost 30 with no kids and now I can't plan to start a family, I can't even plan a vacation. I have used the exact same phrase that I feel "doomed to live in pain every day" and although I know that catastrophizing and future telling is bad, it's the only thing inspiring me to keep fighting.

I ended up searching for a therapist who specializes in chronic pain and while she does encourage me to be realistic I feel like there is a difference between being realistic and feeling like I am giving up. I know exactly how you feel and I just can't give up either. If I don't keep fighting it definitely won't just get better on it's own.

I remember going to a rheumatologist a couple of years ago who told me not to worry about fibromyalgia because I could live basically a normal lifespan except with an increased risk of suicide because there is like an 8x risk of suicide among FM sufferers. I was so mad at him, like he truly thinks a diagnosis that gives people 8x likelihood of killing themselves is just fine because it doesn't otherwise kill you on it's own. Anyway I got rid of him, too. I feel like it's up to us to decide whether or not we are going to buy into someone else's recommended approach, and maybe with your therapist she is wonderful and helping with depression but not so great with chronic pain. But ultimately we get to define the terms under which we manage our own issues.

 

[Affinity]

Just to make sure I am clear.....I don't suggest anyone give up or "accept I am doomed to live in pain for the rest of my life". That would definitely not be helpful, and that's not what I am saying......(.just in case you thought I was.)

What I mean by acceptance is that if you spend your energy refusing to accept reality - what actually is happening in the moment, being angry about it, or pretending it doesn't exist, you won't have the energy left to help yourself. There are so many things that a person with FM or other chronic pain conditions can do to help themselves and to feel better. But first you have to accept that you are where you are before you can help yourself.

Think of it this way: Say you are stranded on an island in the ocean. If you spend your time raging about saying "I don't believe I am here, I cannot accept this, I shouldn't be here, why did this happen", you won't have the energy to find food, make a raft, signal for help, and so on. That is the kind of acceptance I am talking about. Acceptance is not apathy. Acceptance is not acquiescence or approval. It's just seeing reality so that you can figure out what to do about it.

I had to accept that I cannot lift weights any more unless I want to put myself into terrible pain for days at a time. If I had not accepted that, I would only have been harming myself, maybe even doing permanent damage. But that doesn't mean I don't still do what I can to help myself improve.

There may never be a solution found. But striving for it is important, and if we don't do what we can then it's unlikely to appear like magic.

I accept that I have fibro. I accept that today I am in pain. And simultaneously I am doing everything I can, each day, to help myself manage this and to feel better. I have improved a great deal since I started taking this approach.

I agree with you, sunkacola, and I can accept my diagnosis and that I am in pain today, but I refuse to accept that this can never change or that I cannot find a long term solution or recover someday. A diagnosis isn't the same as a life sentence. I watched a movie this week about a group of people who all have fully recovered from fibro or chronic fatigue and it's my goal to be among them instead of suffering indefinitely.

 

[JayCS]

Hi Kait - I'm on both roads, praps because I'm a good task-switcher. I together with my GPs thought it might be fibro quite a few years before it flared, even tho we didn't know that much about it. When I got the diagnosis 4 months after my full flare started I sort of accepted it inside of about a week as the main condition I probably have. However I've also diligently followed up any other things it may be with my 45 docs and 75(?) treatments, originally myself suspecting it might be something autoimmune too, like my centre for rare diseases also thought. Even now after their suspicion has been dampened by checks, I still have the feeling (due mainly to my feverish-feeling and cryotherapy) that some fibro-forms may at least have an autoimmune-component, and the cytokine/chemokine/mast cell-hypothesis would agree with that.

So there is something wrong with you and you are not fine. It appears that way because we as yet don't understand our bodies well enough to 'physically notice' what it is that is wrong. Chance is if your tests didn't come back fine, as was the case several times for me (spinal tumour and serious cardiovascular issues), you'd have something additional to fibro, not instead of it, and even if instead, it might be considerably worse - yes, there are a few things that are ;-P.

Personally I think that your therapist's open! question! is great, at what point you will give up, even if can be understood provocatively, which doesn't make it wrong or insulting, that's a therapist's job (unless they keep pushing it despite you having an answer). My answer always will be: I won't ever give up, I'll continue searching and separately I'll continue finding treatment. But I won't beat myself up for either or for the apparent contradiction. And I'll continue accepting.

And I'll continue being thankful for my self-healing powers, something my therapist and my physiotherapist independently reminded me of just this week...

 

[WhoDat83]

Hi folks. I need some help (29F). Over the last 18 months I have gone from feeling like a 10 to feeling like a 3. I have been to a dozen doctors, had tons of tests (bloodwork, 5 MRIs, colonoscopy, POTS testing, ENT testing), medication trials with no effects, EVER. All my tests are fine. To all of my doctors, I'm as healthy as can be. But I feel awful, every day. My hands have been in pain every second of every day for over a year. I had to give up all of my hobbies, and even now working on my computer is painful. My rheumatologist can't find anything wrong with my hands except for the pain. MRI was clean. I've been seeing a chiropractor for 6 months for back pain.

I get INSTANTLY fatigued doing anything. I used to be a weight lifter, and now loading the dishwasher completely wipes me out. Simply laughing causes me to cough and choke and get fatigued. I sleep between 12 and 14 hours a day. And it's not just drowsiness - it's severe and instant tiredness. I have to go lay down or else I'll just fall asleep at my desk. A lot of my other symptoms look like fibro - but the pain is not widespread. It's localized to my hands and I guess my back (but the back pain comes from standing up for a few minutes). I also overheat from any activity. It's 64 degrees in my house right now . I was "working" out in the back yard for 10 minutes this weekend and was wearing essentially a bikini level of clothes and STILL sweating like a hog. It was about 75 degrees out. I couldn't even go outside last summer. I can't garden, I can't cook, I can't even walk my dogs for more than a few minutes. My bf and I can't even be intimate because I'll either overheat, be in pain, or what feels like have a heart attack.

My issue is that I cannot accept that "nothing" is wrong with me. The speed at which I declined and the severity of my issues (I am close to having to go on ST disability at work) makes me think that something physically noticeable must be going on. I have a hard time accepting fibro as a diagnosis because it's so arbitrary to diagnosis. My bf even asked if it was somatic symptom disorder and it was "all in my head." This really rude neurologist said "eh you're fine, it's probably just fibro." But I'm not fine. I'm a 29 year old who just two years ago was incredibly active, happy and full of life. Now I feel like I'm 100 years old and I've given up 90% of the things I love. I don't want to just treat the symptoms until I KNOW what's wrong with me. Every time I hear "you test came back fine" I get so frustrated. At this point I'd rather get bad news than no news.

So TLDR, how did you accept your diagnosis? "At what point will you give up [on getting tests and seeing doctors] and just accept it and treat the symptoms?" - My therapist.

Kait,
i know what you are feeling. 38M. been diagnosed with FM last august. in the previous year and half i did not know what i had and been three times at the ER thinking i was having an heart attack and obviously i was scared. i had pain in my left arm, sweating, feeling hot and dizzy. Turned out i was "fine" cause the EKG and blood test were remarkable as they said.
So, i was like..ok i m sure it is not mental. my body feels awfully in pain and everywhere and every day.
only last august, as i said, my rheumatologist told me it was FM.
Since than i join this group and gather as many info as i could to see if i can make it better. i started yoga and tai chi which i read everywhere it helps and it actually does. not a yoga person cause it is too slow but i had to adapt and think to make my body feeling better.
As per today there is not a cure but bright side is that it is not deadly. So the only thing we can do it to accept it and rationally live with it trying to make it better.
it s really difficult to accept it..i know..but sooner or later we have to.
I was really active as a person.. and now, even with some obvious abstacle, i m trying to do the same things i used to even if at the end of the day i feel tired. i m keeping playing beach volley, coming to work, give my daughter and wife the attention they need and doing some handy job to my new house.
sometimes i feel the same in bed, as you said, when me and my wife are suppose to get in business but i do it anyway.
i think that stopping myself of doing stuff (which it can be everything, sex/play/work/walk/move) it s not an option for me.
Sunkola posted really good suggestions that you should try to follow and see how you feel.
there will be good day and bad days when you have flare ups but we can learn how to control them and make us feel better.
and Hey..we are right here if you need to talk, vent, seeking for a suggestion. i do the same.
oh..and a therapist is a good idea. i got one and talking to her was beneficial as well. i always thought therapist were useless and people should cope with their own issues but i discovered myself to be wrong. it helps and not all people can cope with their issues by themselves.
Said that... you are young and i m sure beautiful. enjoy your life fully even if you have pain or fibro ok?

 

[JayCS]

i started yoga and tai chi which i read everywhere it helps and it actually does. not a yoga person cause it is too slow but i had to adapt and think to make my body feeling better.

Me too. Plus I can't do exercises or stretches longer than about 30''. So I do fast, short yoga back exercises. Tai Chi is painful for my arms, still, altho my acupressurist is working on it. Trying it lying down showed me that just putting my arms up for 30'' is a help (like legs too.)

i think that stopping myself of doing stuff (which it can be everything, sex/play/work/walk/move) it s not an option for me.

I used to say that, when it was just Ache and pains. I still say that as far as pain and even Ache is concerned. But I have no choice when exhaustion sets in, I get the feverish-feeling and plain cannot move much, stumble (dangerous for cycling), can't keep up with my wife going for a walk (or that'd be it for the day) and realizing that pacing will at least allow me to do something. 3h of activity per day is often my maximum, I just haven't usually got more spoons any more. And I used to work 50h/wk and had no problem with muscular sports 2h/d. Besides, my wife, if not my neighbours, wd complain about me crying and praps groaning - from the pain. ;-P She suffers more than I do from my fibro.
So good that it's not an option for you and I hope that it stays that way...