Reactions to diagnosis of fibromyalgia? Happy? Relieved? Sad?

[Eff2013]

I have my phone consultation on 8th September. Im worried they won't say its fibromyalgia but just my age or in my head. I just want to know and can get on with it.

I wish you all the best Kittykat12. I know it is probably not the ideal way to have the consultation but given the situation now it is better than nothing at all. I hope you get all your questions answered. I found that by writing a list of questions I needed to ask made the process a little easier. Best of luck to you and please let us know how you go.

 

[Eff2013]

Hi E,
When I first was diagnosed I thought I had just got a death sentence. I kept thinking about my future and what it would entail. I sat and moped and felt sorry for myself for a few months, which made me feel worse, then I sat up, gave myself a talking to and determined I was to not going to give up! I watched my Mother fight and win cancer twice so I know I had fight in me...
I started researching in what I could take supplement wise to help me, I started exercising and just made sure to keep doing the things I enjoyed. Each one of us are different in our symptoms, no 2 days are the same, you will have good days and bad days. On those bad days just rest. I do believe it progresses with each year, I have found the summers are worse for me. But please try to keep moving and only you can decide what to take and how to handle the symptoms.

Hi Carolyn Rhodes,
You sound like you have a very positive attitude. It's a wonderful outlook to have on life.I too have been doing a lot of research and have been taking supplements.(vit.D, fish oil, CoEnzyme Q10). Every little bit helps. Also removing some inflammatory foods from my diet.
It is so true, we have good days and bad days. I totally agree with just resting on the bad days. In the past, I would push on and then wondered why I couldn't move for days. Rest is very important, without the guilt attached to it.

 

[RLG]

Good morning, all. It gives me a sad sort of comfort to know that I I'm not alone in it and helps me put my own symptoms in perspective. Every week is different. Pain moves around. April/May were complete and total all over multi symptom flare--unbearable. Better now, in part because I now have names for most of it--good to know its not in my imagination, sadly.

Today I take one more step toward normalcy--a new normal at work. I am fortunate to have people in my life who seem to accept that.
Just want to add that I had a chest CT done...found scarring and mild damage from the ARDS and ventilator I endured in 2016. Ugh.
If you knew me you'd know that is...not acceptable. I am determined to live my life in peace, in service to others, and find laughter in it and remain productive.

Wishing strength, productivity, understanding, and compassion to all of you today!!!

 

[sunkacola]

The pain does move around, and it changes in intensity as well. Sometimes I will go for days being able to get up in the morning without pain, and then a couple of weeks of getting up in a great deal of pain every morning. Rarely I get enough sleep and wake up feeling really good. Sometimes I get almost no sleep at all, and that can go on for days.
Apart from obvious causes, like doing too much work physically the day before bringing corresponding pain the next day, I never know what it will be on any given day.

For me, lately it has been focusing a lot on my legs, which is not uncommon for me, but now it is my shins as well as my calves and thighs, and every step is painful. It's hard to keep motivated when the pain is over so bad, and on top of that we have a pandemic to deal with so the usual life activities are either severely curtailed or non-existent. All we can do is keep putting one foot in front of another.

Actually, I think maybe the hardest thing for me is that I cannot manage a really regular exercise schedule. Working out every day, rotating workouts and activities, is best for me, and I get into a pattern that brings me joy and anticipation each day looking forward to working out or going hiking or whatever it is . But when a bad flare happens for several days it throws that schedule off and and it's hard to get back on the rotation again. Especially when it is 115F outside. But so it goes. We all can only do what we can do, and keep going.

 

[RLG]

The pain does move around, and it changes in intensity as well. Sometimes I will go for days being able to get up in the morning without pain, and then a couple of weeks of getting up in a great deal of pain every morning. Rarely I get enough sleep and wake up feeling really good. Sometimes I get almost no sleep at all, and that can go on for days.
Apart from obvious causes, like doing too much work physically the day before bringing corresponding pain the next day, I never know what it will be on any given day.

For me, lately it has been focusing a lot on my legs, which is not uncommon for me, but now it is my shins as well as my calves and thighs, and every step is painful. It's hard to keep motivated when the pain is over so bad, and on top of that we have a pandemic to deal with so the usual life activities are either severely curtailed or non-existent. All we can do is keep putting one foot in front of another.

Actually, I think maybe the hardest thing for me is that I cannot manage a really regular exercise schedule. Working out every day, rotating workouts and activities, is best for me, and I get into a pattern that brings me joy and anticipation each day looking forward to working out or going hiking or whatever it is . But when a bad flare happens for several days it throws that schedule off and and it's hard to get back on the rotation again. Especially when it is 115F outside. But so it goes. We all can only do what we can do, and keep going.

Oh, sunkacola, I really feel for you!!! I get it, all of it. I understand and you sure are not alone
My 'workout rotation' is a huge joy in my life, too. I may not be as good as I once was, but it brings me so much happiness. It sucks when my body has other plans. For a short time there this spring the pain in my thigh and knees (and elbows, hands, feet, jaw...) was starting to make me feel a little fear of the very thing I love so much. If shaving my legs exhausted me, working out was kind of terrifying.
Press on, sunkacola!! There is a tomorrow, and another after that one waiting for us.
<<Hugs>> to you. Hang in there.

 

[Eff2013]

RLG and Sunkacola, you have both articulated my very thoughts. "Every week is different. Pain moves around" AND "Apart from the obvious causes .....I never know what it will be on any given day." So true and so FRUSTRATING.
My major flare in June and most of July was concentrated primarily on my wrists, arms, shoulders and fingers. It was so bad I was convinced it was something else. Now the intensity of the pain has gone and travelled to my upper back. And it's not just pain that makes things difficult but all the other weird things. So where next?
Yes Sunkacola it really IS difficult at times to keep motivated when we are always in some sort of pain.
What keeps me going at the moment is my short walks around my neighborhood. (on my good days only).
I'm an outdoor person and love my garden. I keep telling my husband that it is calling out to me. It needs some love and lots of care. Something I cannot give it at the moment and that makes me sad and frustrated. I used to spend hours pottering around.
I totally get both of you and feel your pain. This forum has truly been a lifesaver for me. Hearing your stories gives me strength in that I know I am not alone.
So let's soldier on and keep strong

 

[JayCS]

I've always been interested in strange diagnoses like MCS, CFS and FMS, praps because my body & mind were never easy.
My docs (and I) had suspected fibro for quite some years. The first rheumatologist Oct19 didn't find anything, and said it couldn't be fibro, sent me on to a neurologist and endocrinologist. That irritated me, I was sceptical, and then Feb20 the second rheumatologist did dx it as fibro. It pigeonholes about 80% of my symptoms, which I was more thankful more than whingy.
Then I could pinpoint and alleviate quite a lot of them by finding direct influences (inside of several months by very analytical and asking loads of people). But some, including the main ones, are a bit different to what most have, so I was still interested in finding something more. A centre for rare illnesses as dxed sth. like Hashimoto (thyroid) and suspects sjögren's. I think I'd be satisfied then. On the other hand they won't change that much. The pigeon-holes help me find a certain mindset and others who I can compare with and learn from to alleviate and cope. So I work at it on a macro-level and a micro-level. But the micro-level is the one that works. I work at them like a detective, puzzling around, interested, curious, the darn thing is with every new diagnosis I feel I myself am "the murderer" yet again, like in films about, and then I have to work at defending myself by finding ways around them, protecting myself...

 

[Affinity]

When I was first diagnosed I already knew I had suffered from it for a long, long time and even though it confirmed what I already know I was like "screw you" and totally avoided any sort of medical management of my symptoms. I was able to mostly manage things on my own for about 5 years after that until I had some other sudden and unexpected health issues arise in May 2019 that totally set off the fibro as well and since then I have really struggled to regain control of the symptoms and this year, since the pandemic started in March, I think the added stress has made it even harder to manage.

So it didn't make me happy, and I felt like it was just another way of saying "we can't really help you but here's a label".

 

[sunkacola]

I felt like it was just another way of saying "we can't really help you but here's a label".

Yep. That's basically what a diagnosis of fibromyalgia means.

 

[JayCS]

My centre for rare illnesses has dxed Hashimoto and suspects Sjögren's, and before the results the doc said we like helping to show you what's behind the "unsatisfactory dx". But when I look & think about what this means it's more than a label, but they still can't help me. This is then exactly what all 4 docs said in the rheum. clinic too about Sjögren's (or both?): So what...! *sigh* Plus: I have to find the right state of mind - ay, sunkacola ;-)

 

[sunkacola]

Jay.....yeah, I know.
But with true acceptance comes the right state of mind.....most of the time. And you are working pretty well on that.