Newly diagnosed and new here

Support
1

I am 35 and have dealt with health issues my entire life. I was born with an immune deficiency disorder, and in my teen years was when it switched to autoimmune issues and the gazillion tests began. I have also dealt with mental health issues, mainly depression and anxiety, most of my life.

Throughout the years of seeing doctors for my numerous symptoms and finding nothing from all the tests i got done, I practiced self care. I’ve on and off improved my nutrition (have had many setbacks there lol). I have regularly worked out for years. I also have a strong faith in Jesus and have quiet time with him every morning through prayer, devotions and the Bible, and journaling. I have also been involved in recovery since 2017 for my mental health.

Over the past couple of years, my symptoms seemed to be rapidly getting worse. Back in my twenties I mentioned fibro to a doctor, and she said, “let’s not look for something that’s not there.” Other doctors in more recent years mentioned it being a possibility. Finally, after seeing a new rheumatologist in the place we moved to in Tennessee, he gave me the official diagnosis back in December 2021.

At first, I was greatly relieved just to have an answer! At the same time, I felt discouraged because i had basically already been doing the things that are recommended with no real relief.

I’ve now come to a point of feeling hopeless for the return of quality of life. It is so affected now. I have 2 kids, ages 7 and 9, and a husband (who is very supportive!). I didn’t work for nearly 8 years after having my first one. I went back to work on 2020 after my husband lost his job. Working retail, which is most of what I’ve done. I found i couldn’t do full time hours anymore.

Last year, i finally got a job in my field of passion. Mental health. I have a strong calling to help others with similar things I’ve been through. It’s a residential treatment center for teens, the age i was in the prime of my depression. It was hard and a lot to adjust to, but i finally have a job i love.

However, even only working 18-24 hours a week with only 6-8 hour shifts (where i actually get to make my own schedule!), i find myself utterly exhausted and unable to do much else. It’s gotten hard to clean, to go out places in the community, and do extra things. It’s even gotten hard to go to my recovery group! To go to church.

What’s worse is this mental battle i go through with myself. I’ve downplayed my symptoms all my life saying it was normal. Now that I’m acknowledging my pain, i find myself thinking that i only brought this on myself because of how poorly i handle stress and trauma. And that I’m only getting worse for psychological reasons. I’m STILL downplaying it.

At one point, i worked 2 jobs full time. I jogged 2-4 miles almost every day. I did intense strength training. Now i can’t move up and do what i want to do because i can’t work full time. I can’t finish school and become a therapist because i can’t handle the load with everything else. The only working out i can do now without flaring up is walking and yoga. And i am lacking in my community because it’s gotten so hard to go out on top of my mental health issues.

I am just feeling alone and frustrated in this. I needed a place to vent where people understand and know this battle, including the mental battle. I have a good head on my shoulders and have a lot of recovery tools, but i am suffering right now.

Thank you for reading this far :heart:

7 Likes
2

Hello Picklepuddles! Welcome to our Fibro family! I’m really glad you are reaching out for support. We are here for you. I’m sorry you’re having to go through this. First, you were dismissed by a doctor. Ah! When I was diagnosed with fibromyalgia in 2018, I knew very little about it. And I had worked full time, in a hospital, for 23 years! I don’t remember a patient ever telling me they had fibromyalgia. I went through periods of grieving. It was like… I used to be able to do this or that and BAM! No more. My grieving process is definitely better than it used to be. I also have depression, anxiety and complex PTSD. I had a minor surgery today, so I’m a bit tired. But, I love going to church. But at least half the time, I’m unable to go due to fibromyalgia. I try to tell myself that my life is different now. I try to ask myself what can I control? What can I change? Believe me, it’s not easy. But it has helped me to accept that I cannot work anymore, that it’s ok to rest, it’s ok to miss going to church. I then watch the service online. If you’ve experienced trauma, which is stressful and completely out of your control, please know IT WAS NOT YOUR FAULT. You didn’t bring this on to yourself. No way. Nope. But you came to the right place. You can be you. You can be real. We get it. I get it. :hugs: Freedom

5 Likes
3

Thank you so much for the encouragement :heart:. I never thought of this being a grieving process. Looking at it that way will be helpful. I’m glad i came here. It felt good to release all that, and it feels good to be reminded that I’m not alone.

5 Likes
4

Sounds very similar to me! I used to be able to do a lot more, now I am tired most of the time. Two things that have really worked for me: really try to get good sleep, and to allow myself to be tired and to rest. I’ve had to stop beating myself up for not being able to do things. I also have learned to do what I call “energy rationing”: even if I’m having a good day, I force myself not to do too much because I usually end up paying for it the next day. I’ve tried a few different medications but sleep and rest are the only things that really seem to help. And, of course, giving myself permission to rest!

5 Likes
5

Hi Picklepuddles - great advice and experiences from @Freedom and @Chameleona.
Chameleona’s “energy rationing” is a brilliant image which goes beyond the “Spoon Theory”.
Scaling down is so hard when we’ve been very active, especially if we have tended to define ourselves by our merits instead of Grace, wanting to prove that we’re good boys’n’girls.
Now’s the time to first let go and let ourselves be healed a bit, learn that it’s our turn, learn to self-care. The more we can do that, the sooner we can take up a positive attitude again.
That’s the first target, nothing else. Take our health in our hands, meaning no longer overdoing it, looking for our sweet spots by taking everything down and then edging it up again slowly.
At that point we can start making priority lists and learn to enjoy a much slower life than before.
The art is to then savour this slowness, this lack of productivity, as a new life which isn’t worse than the old one, perhaps in a certain way better, because humbler.

4 Likes
6

I have appreciated every comment on here! Each of you have given me good insight. @JayCS you saying “it’s our turn” really spoke to my heart with the rest of your comment. I’ve gone back and forth with pity parties and blaming myself, thinking I’m milking it too much now that i have this diagnosis. But I told my husband when I was talking to him about it this morning that maybe I deserve to have some pity parties after how much I’ve downplayed how I feel my whole life. After years of codependency and feeling like everyone is my responsibility, it’s my turn. After years of pushing myself to do what’s expected of me in society, it’s my turn to rest and slow down.

4 Likes
7

@Picklepuddles when I get my new computer I will bd able to put down a few words. My mobile is pretty bad to type. I feel for your situation so much and would like to talk to you. Until then take care girl. Mary

2 Likes