My story so far

[Kelly Anne]

Hi, I'm a newcomer, thanks for having me in the group. I am 57 years old and was diagnosed with Fibromyalgia over 13 years ago but it has only been in the last year or two I acknowledged my condition. I have had 3 lots of spinal surgeries one at the age of 28 in my lower back and 2 fusions 3 months apart in my cervical spine 13 years ago. After all 3 surgeries I had referred pain. Lower back there was leg pain down into my calf and upper spine mainly neck, shoulders and arm pain. After my last cervical surgery it seemed to take a long time to settle and I was still in a lot of pain although different to prior surgery. I went back to my surgeon who to his credit did every test imaginable. There were a few things mentioned such as a rotated cuff and some nerve damage but that's when my surgeon mentioned Fibromyalgia. I said I disagree with you, not knowing a lot about the condition, I thought what he was saying was it was all in my head and I certainly knew that wasn't the case. After ending up in hospital a few times over those years in shocking pain and reading my last MRI report that doesn't read particularly well I realised I needed to try and take some control over my condition. I have also included a pain specialist who is extremely supportive and I know I have someone else to go to. I suffer from anxiety/depression and have from my first lower back surgery. I still see a Psychologist for support and find her very helpful. I decided to join the gym and do classes with ladies who are a fair bit older than me and a fair few have injuries such as myself. They are the loveliest women I have ever met, and we all encourage each other. What I didn't relise was the classes I was doing which is aimed at my level not only helped me physically but mentally as well. I have had to take a break from the gym for personal reasons but cant wait to get back.

 

[SweetWithSour]

Wow you are a warrior, no novice when it comes to pain with the multiple surgeries , ,and an expert in listening to your body and what it has been telling you. Congratulations on pulling your Healthcare team together, including mental health. You are a ROCK STAR with coming to terms with the diagnosis and doing things that can keep you healthy and strong. On the positive side of the syndrome. By embracing it now, learning about it, and doing what you can to manage and minimize the symptoms in productive ways is fantastic! Take a moment to celebrate all these big milestones that you have passed!

For me, I find my anxiety and major depression are very much intertwined with my fibromyalgia and chronic fatigue syndrome. My mental health was involved and effected by this complex and tightening together weave. I'm still in the crazy difficult process of lessening this intensely tight weave.

What I have learned is not to forget to celebrate the accomplishments. Heck, some days that may be as minimum of getting out of bed. Push yourself to continue to progress. However, remember to not push so hard you have a backslide crash.

Learn to again listen to your body, and also be ready to know when it's lying to you. Try and identify those pain signals that are setting off alarms that are misfiring.

This is my process. I try to acknowledge them, thank them for their alarm, that they are no longer needed, and then try and help them calm down and relax (breathing, moment, warmth), I then say I'm no longer going to acknowledge your alarm and will be ignoring this as a malfunctioning alert.

I know my process may sound silly! And I'll admit it is silly. I'll also admit it works for me. It let's me feel that I'm in control and the pain, the condition, the disease is not in control. I have a choice, I've acknowledge, I worked to relax and calm, then I said I will now be ignoring you as there is no need for the alarm. It puts me back in the driver seat, not the pain, not the anxiety, not the depression. Me, being able to make decisions and choice to navigate this long complex journey.

So a very long winded reply of saying congratulations, celebrate some big milestone and enjoy the community and supporters you are building!

 

[sunkacola]

I know my process may sound silly! And I'll admit it is silly.

On the contrary, @SweetWithSour, your process is not the least bit silly. It's spot on.

It only feels a bit silly at first, celebrating the accomplishments, however small. I think of it as how I would praise a dog I was training, for getting something right. No reason not to use it on myself as well. Positive reinforcement works for everyone, not just dogs!

Your advice is pretty much what I would say and I agree with you on all of it. And I don't think you were long winded about it, either.

 

[Kelly Anne]

Thank you SweetWithSour from the bottom of my heart for your lovely message. I certainly didn't think your message was long winded either, I certainly could of listened to more. I appreciated you taking the time to reply to me. That was the first time I have ever openly talked about my condition even many of my close friends don't know. I was anxious about what response I may get from people who don't understand the disease. I certainly can tell you do. And I appreciated you sharing your experiences and some of the things that are helpful to you. My anxiety and depression are definitely intertwined with my Fibromyalgia and pain. I thought your process of dealing with your pain and how it puts you back in control was very helpful. Thankyou for sharing that with me. As it certainly is a long and complex journey to navigate. I don't know if it's common or not but the guilt and shame of not being there 100% for my two girls who are 18 and 16 overwhelms me quiet often. I feel like I'm letting them down. This is still something hard for me to come to terms with. I look forward to hearing from you again. x

 

[SweetWithSour]

I absolutely understand the guilt and shame part. Working with my counselor I've learned that this has been self imposed suffering. That yes living and navigating life with an invisible illness is difficult, but you don't need to suffer while doing it.

It has taken my years to learn that my body just takes a little more time to recover and that I need to plan and pace out the week for the most success.

Learn when your peek energy times are and try to schedule your more active activities at that time. I also know for myself, after 2:30pm my brain has shut down, so I don't schedule complex activities that I need to think or focus.

The most freeing thing I've done is owned, embraced and stopped hiding my fibromyalgia, anxiety and depression. I don't feel shame anymore and have stopped comparing myself to others. Some people will be able to do more than me, some less. I just worry about what I can do and have stopped trying to be perfect. I'm ok now if you walk in my house and see a tumbleweed furball from the dogs or if my counter isn't cleaned off. I'm learning the important things to put my energy towards and the other stuff, I'm learning to say f it.

You are amazing and have raised two wonderful young ladies. Teach them how to be a warrior too. Show them this with what you can tackle and more importantly teach them it's OK to say no to activities and take some downtime to recover.

Wishing you all the best! Come stand in the light and embrace all parts of you, including your fibromyalgia.

 

[sunkacola]

Once again, @SweetWithSour , your comments are right on, and pretty much the same as I would say. One of the most important thing I learned is just what you say....living with fibro is a challenge but it's not necessary to suffer mental pain along with it.

I haven't had children so I don't know a thing about raising kids. But it seems to me that a parent would be doing their kids a great service to show them that it's possible to live with limitations without feeling guilty about what they cannot change, because sooner or later everyone encounters a limitation to what they can do. I think it would be healthy for kids to learn that strength doesn't always mean being able to do everything and charge through all of the time, that a person's value doesn't rest on what they can physically accomplish, and that it's OK to be just who you are in this moment.