Fibro AMA

Well ... phew! ... after appearing on That Grief Relief Podcast, I started having some very long conversations about fibro. People had a lot of questions. So here they are for your reading or viewing (coz there is a video) and learning pleasure. 

If you have any questions after reading this post, please feel free to get in touch - that's what I'm here for after all 🤗

But first, as usual: please please please don't take anything I say here as a substitute for getting a diagnosis and support from a qualified medical professional.

• How bad is the pain on a scale of 1-10? 

It changes almost every day and it does change during the day. On a great day, it's zero and it stays zero. And I have had great days - granted I can't remember when my last great day was ... I'm guessing a couple of years ago. 

Before the meds, I remember being asked this question by a nurse before going in to see the doctor and I said '13'. I don't know why I chose 13 especially because there were days I could barely move and these would be more like 100. I guess I must have been comparing my pain to other people who I know would be in huge amounts of pain and I probably reckoned I should be more 'realistic' about my level of pain. Also, I know I have a high threshold for pain (not as high as my middle sister, though - as far as I'm concerned she's superhuman!) so that makes it difficult for me to gauge how much pain I'm in but the point was to let her know that the pain was off the charts. So I went for 13. 

The nurse smiled and looked at me like I hadn't understood her simple question and she was feeling sorry for me because of that and said 'I asked you on a scale of 1-10' and I said 'I know. And I said 13.' She wrote 10. 😡

That's what the mainstream medical profession does when it can't understand what the patient is saying, it decides on what it does understand, what fits, and it writes that down. I did tell the doctor about this little incident. 

I haven't had days of 13 since starting the medication, thank goodness. 🙏 

On a scale of 1-10, I feel like I hover around the 3 or 4 mark for the most part these days. As the day progresses, if I do something that my body decides is traumatic, the pain can go up. 

• I don't understand how you know or how you decide what you can and can't do. How do you know what movements will or won't result in pain?  

There's no single answer to this. Sometimes, there are places that hurt and I have to just be careful not to put any pressure on them at all. If you read my posts about fibro pinky, that's one of those times. I quit typing constantly for a few weeks - I'd limit myself to a few short bursts during the day and sometimes I wouldn't type for an entire day or two. And now as long as I don't type consistently for days on end, fibro stays away from my pinky and other fingers most days. If you haven't read the fibro pinky posts, they're here: 

https://thatfibrothing.blogspot.com/2020/10/fibro-pinky.html

https://thatfibrothing.blogspot.com/2020/11/update-on-fibro-pinky.html

But really, for the most part, it's only after years of getting to know my body again and how it functions that I've gotten to the point where I know what will or won't end up hurting. It's almost like being a baby all over again and discovering what your different parts do and how you use them. So now I know, for instance, that wearing heels or jumping on the trampoline will hurt - maybe after five minutes or maybe the next day. And how long they'll hurt for is anyone's guess. You'll know from listening to the podcast with Katie that some pains come and go and there's nothing I can do to not make them appear nor is there anything I can do to make them go away, like the Wolverine pain or fibro pinky which just showed up one day and went away whenever they decided to go away; and some pains are always there, like my back or knees that will get uncomfortable more than painful during the day if I sit for too long or lie down for too long or clean my entire apartment in one day instead of over two days.

All that said, sometimes, I get thrown a curveball ⚾ like when I wore my comfy boots to a friend's wedding and danced very comfortably all night and the next day I had to literally crawl out of bed and wait a few hours to be able to stand like Gollum because my back, knees, hips, and ankles hurt so much - which has never happened before or since. God bless my daddy for allowing me to lean on him all day whenever I needed to move from one place to the next!! 

It took a couple of days for me to get back to normal.

• How do you know if a pain you're having is fibro or not? How do you know you don't need to go to a doctor? 

Years of experience with fibro 😝 It's true; that's the only way I know. Generally, I now know, instinctively, when a pain is fibro and when it's not. (whisper: it's usually fibro lol) 

Sometimes I reckon I might be mistaken so I'll rub a muscle relaxant cream on or take an over-the-counter muscle relaxant; they never work. It's fibro. 😂

• In the video you say you're not in pain but that your brain tells you you are. What does that mean?

This is my bad and thank you for bringing it up. I've gotten used to talking about fibro within the understanding that the person I'm talking to has of it because I'm still not used to using my knowledge of it to frame the conversation (and I realize how hypocritical this is having just said that the mainstream medical profession decides on what it does understand and frames the conversation based on that). What Katie meant with that question is 'do I have a reason to have pain' not 'am I in pain' because yes, I'm in effing pain all the time (!) but I don't have a physical reason for the pain to be there and never go away. It's my brain and pain receptors shooting off crazy signals for no good reason. 

A better answer to that question is quite simply: yes, I'm in a lot of pain sitting here with you for no good reason. 

• Why don't you just throw out the heels and motorcycle stuff? 

😱😱😱

Bite your tongue!! 

What if there's a cure tomorrow? What if I heal tomorrow? I live with hope every day. Every day, in the back of my mind and sometimes in the front of my mind, there's hope that I'll read an article that says 'Cause and cure for fibromyalgia found'. Or maybe I'll get an email from Alex Howard or Jamie Richards that says they've found a successful healing path. 

As long as I have the motorcycle helmet 🏍 and the heels 👠, I have hope. And I won't willingly remove that hope from my life. Even if I wanted to - and I know that there are people who would because they believe that living with hope is tantamount to living with disappointment until hope becomes reality and they don't want that - it's not that easy. To me, that feels like giving up on myself. I love myself too much to give up on me. 

• What's the biggest change you've had to make? 

Wow! This is a tough one. Obviously there have been many, oh so many!, physical changes to accommodate the things I can't do and the things I shouldn't do. Learning how to hold a plate, for example, so that my wrist doesn't bend every so slightly 'that way' and hurt for days or weeks afterwards. 

I suppose the biggest change, though, has been to do with how I feel about myself. I've always been a super high achiever and, for pretty much my entire life, my identity was wrapped up in my achievements. That's the lens I saw myself through. Fibro threw all that out the window. I can't achieve everything I want to achieve now, whether that's getting my skydiving license or typing a blog post a week 🤷, so I had to learn to love the person that I am. 

And, not for nothing, but that's a difficult transition to make. 

• Could the fibro be related to my breast implants? I'm going to combine this with one of the most popular requests I got which is to run through what I mean when I talk about my body and trauma.

So the short answer is 'yes, it could be'. The longer answer is: you'll have heard me talk a lot about trauma with a small T (which I learned to recognize from Niki Gratrix) and that trauma can be physical as well as emotional. You'll also have heard me talk about how what sets off my fibro sometimes is my body (or mind) deciding to decode pressure as pain - so the pressure on my fingers of constant typing sets of fibro in my fingers - getting a massage sets of fibro in whatever part of my body I've had the massage and about how fibro results from an accumulation of years of combined trauma (I've referenced Dr. Bessel van der Kolk's book 'The Body Keeps the Score'). 

Well, having your body cut into and foreign ... things ... put inside it does constitute trauma! 😲

While I do know of one person with CFS - I've spoken about how CFS and fibro are similar enough in cause and healing that what's used for one is usually used for another - who has had her implants removed, no, I'm going to have my implants removed for a few reasons. 

• You said you've tried a lot of stuff to help with fibro but you don't mention craniosacral therapy or CBD oil. Couldn't they be used to help manage the pain or even heal from fibro? 

There might be and I would love to try them. The thing is, CBD oil isn't available where I live and before you ask, no, I can't have it delivered. As for craniosacral therapy, the research shows that it can be helpful as part of a multidisciplinary intervention. There are two considerations I have when it comes to craniosacral therapy: first, there's only one person I know who I would trust to work with my body that way and she lives a seven hour plane ride away; second, healing from and living with fibro is expensive! 💰💰💰

Unless you're shelling out mega bucks for your insurance - which I'm not - anything you choose to do is generally not going to be covered. My doctor's visits and meds, the two constants in my healing journey, aren't covered by insurance; and the other things I've tried weren't covered either: months of Ayurveda, I forget how many acupuncture sessions, yoga, counseling. By far the most expensive thing I tried is cryotherapy. I tried this after reading that it had been shown to be effective in trials - there was only one research paper that I could find online and the results the authors reported were positive enough that I figured giving it a try wouldn't hurt. The researchers reported their findings after 10 cryotherapy sessions; I had over 30. Had it worked, we'd be calling it money very well spent; it didn't so it's a massive expense.  

Why did I try so many sessions? Hope. And we tried different things that hadn't been mentioned in the research paper I found - different temperatures, more than a session a week (which usually isn't done so kudos to the team for trialling that with me), a combination of full body and targetted cryo.

(side note: To many people's surprise, yoga actually makes me hurt. I guess it's coz it puts consistent pressure on my joints for longer than they wish to experience it 🤷)

• You said in your conversation with Katie that the medication you're taking is affecting your eyesight. So what are you going to do about your meds?

Under the supervision of my psychiatrist - I mentioned in my conversation with Katie that I get my meds from a psychiatrist because fibro is classed as a psychiatric disorder since there's not physical cause or reason for it - I've been veeeeeeeeeeeery gradually decreasing my meds. I just have to keep an eye, no pun intended 😝, on myself and observe any changes.

• Is there really no cure? There are people online who say they've been cured.  

This is a question my mummy asks a lot 💕 As far as I'm aware, no, there is no cure. And honestly, I haven't listened to anyone who says they've been cured since the very early days of my diagnosis. I listened to what they had to say, sometimes I tried what they tried, and I still have fibro. And as I learned more along the way and tried very many interventions, I've become convinced that there isn't a cure yet.  

• Once you got diagnosed, what advice did the doctors give you? 

Well, they all agreed that I needed to move and, contradictorily enough, not moving hurts and moving hurts. You've got to find a balance and find what works for you. Yoga doesn't work for me but I know someone else with fibro who swears by it. What works for me, for a reason I really can't understand, is strength training. 🏋 It's the least painful method of exercise I've found. 

The thing is, fibro likes to throw you curve balls. So your balance may change over time. Initially, my balance was a combination of indoor cycling and body pump. When fibro moved to my fingers I had to find a new balance which is how I ended up with strength training. Thanks to Covid, I've been focusing a lot more on meditation especially because body weight exercises hurt ... don't ask coz I don't know 😶 ... I'm hoping to get back to the gym soon so we'll see how my body reacts 🤞

One word of caution I'll give you is this: don't listen to what kind of exercise people tell you to do! Only you know your body with the degree of intimacy it takes to know what will hurt. In my case, all the doctors told me to swim, but swimming hurts - according to them it shouldn't, but it does. Personal trainers are the worst! I've had a handful over the years and, inevitably, they just will not listen when I tell them that something will hurt or does hurt. I don't care how many qualifications they have, they simply refuse to listen. 😡

• How do you work out if you're in pain all the time? 

Well, as you'll have read in my first post there was a time when I wrapped myself up pretty much from head to foot. 🤖 I don't do that anymore but I do carry them around with me and I do still wrap parts of myself up sometimes - my wrists, my knees, my ankle sometimes ankles. Even when I'm not wrapped up, I'm in pain. I work out with the pain, not without it. It's like what people say about bravery not being the absence of fear but, rather, of doing something with the fear in your heart.  

Some days I hurt more than others so my performance isn't as good. Some days there are some moves I absolutely can't do. I deal with it when it happens - I work out less, do different moves, use smaller weights ... whatever it takes to get the job done. While there are days when it hurts too much to work out they are, thankfully, few and far between.

• You said singing works for you. But how do you sing so that it creates the vibrations you were saying need to be created to stimulate the vagus nerve?

I sing really loud! Like, really loud. 🎤 I also tend to sing songs that are sung by men because that's just how my voice is comfortable with getting my entire throat to vibrate - think Eddie Vedder or Steve Perry. That's not to say that if you're a soprano you can't create those vibrations, you just need to find the songs with the right tones and pitch that allow you to create those vibrations. Opera might be your thing or even raspy vocals like Macy Gray or Bryan Adams. 

• What do you mean that your body changes on a cellular level? 

It's quite simple, really. First, like I've said in previous posts and in the podcast interview, I developed lactose intolerance and insulin resistance so that's my body changing on a cellular level where my cells no longer react to the food I eat in the way that they used to (I miss pasta and pizza and rice and cereal!!! 🍲); second, when your sympathetic and parasympathetic systems are malfunctioning, for lack of a better word, and your body is sending and receiving false pain signals, that's also a change on a cellular level - that's your cells not behaving the way they're supposed to. 

• Why did your tinnitus come back after the tapping? 

Truthfully, I don't know and I haven't been able to find or get an answer. 

I have hazarded a guess and that guess is that I haven't addressed, or tapped on, the fundamental reason that's causing my tinnitus. Now, while I'm pretty sure - and the science will back me up here - that it's stress-related, I don't know for sure where the stress is coming from. In order to find out, I'd have to make a list of all the things that cause me stress and tap on each and see which one gets me results. The thing is, there's no way of knowing how long the tapping will take and, while it would be beyond wonderful to never have this incessant ringing in my ears 🔔, I am also conscious that my current state of mind is one in which I am feeling upset that tapping hasn't worked and I'm not open, at this moment, to trying it again. It's been my experience that when I go into things with anything less than a 100% openness and willingness to try, I become more stressed which then, naturally, has the exact opposite effect. 

• If you were so unhappy at your job, why didn't you just go to another company? 

Because that wouldn't have stopped me being unhappy. Simple. One of the reasons I was unhappy which I knew wouldn't be solved by going to another company, was that I wasn't being true to myself and authentic in my life. I was walking and talking and behaving like someone I'm not - hiding my true self in a package that was acceptable to the people I was working with. And I didn't want to do that anymore; it was one of the fundamental sources of my stress, and had been for almost 20 years. I knew I needed to be somewhere where I could be me and that somewhere, at this time, is working for me; working with people I want to work with, having the freedom to represent myself in a way that I'm comfortable with, and being able to walk away from working with people I don't want to work with. 

• How do you know you're getting better? 

Well, before fibro, I used to be a stomach sleeper - I'd fall asleep on my back but generally wake up sleeping on my stomach with my arms curled up under my chest. When fibro hit I started sleeping curled up in a fetal position for the six hours that I could lay down because that's the position that hurt the least. A few weeks ago, for the first time in seven years, I woke up and found that I was sleeping on my stomach with my arms curled up under my chest. That's why I believe I'm getting better 💖 Don't get me wrong, I still hurt all over. In fact, my fingers are the most uncomfortable part of my body and, in addition to fibro pinky, I've got other fingers with different pains in them. My wrists hurt, too. And that explains why it's taken me so ruddy long to get this blog post up! But I'm sleeping on my stomach again and that's an improvement I'm happy to have!