As many of you who follow me on social media know, I went off to see a Doctor who specialises in Fibromyalgia. I was really impressed with the pre-appointment documents he sent me. I completed a Fibro questionnaire that I scored 90/100 on. Yeah this is not one of those tests where you WANT to score high! I loved that it covered so many aspects of Fibromyalgia that aren’t always common on these questionnaires. Things like having flu-like symptoms! I knew it wasn’t just in my head and I was glad to see that this doctor already understood these kinds of symptoms of Fibromyalgia.
loved that before I even saw him, he had some idea of what I was dealing with and I didn’t need to sit and remember everything I needed to say! This always causes me anxiety when seeing any of my specialists – brain fog gets me and I walk out frustrated because even with my list I bring along, there are things I forget to chat about!
Appointment day came and I was excited but also filled with trepidation. Here we go again right? How many times have I been excited at the prospect of seeing a new pain specialist only to be disappointed later? This somehow felt different. As the receptionist was handing me more documentation to complete, she said “ My Gosh you scored high on the Fibro questionnaire”. Damn straight. Also awesome because already I am being taken seriously right? One part of the paperwork required you to complete all the different modalities, approaches and other things you’ve done to ameliorate your pain and fibro symptoms. It had space for 20 things. I’ve been going through this battle for 14 years … I filled up those spaces really quickly! I’ve tried a lot more than 20 things to fix the pain so I just listed the most important/extreme things I did. I have to also say that post-appointment I was contacted by his office and we went through dates and efficacy of all these treatments. I love that this doctor does pre and post appointment work on your case! I feel that he is really taking the time to understand absolutely everything. Can’t say I’ve experienced this from a doctor before!
Time came for me to go in. I steeled myself, not sure who or what I was going to encounter this time. “Please Lord let this get me somewhere” I muttered as I went in. Dr Raath was a pleasant surprise. I can honestly say that in 14 years no one had described/explained Fibromyalgia to me like he did. He drew pictures and jokingly said “I will write the medical terms because I can see you Google information. I like patients who want to be in the know and understand”. I loved this. We had such a great conversation about the evolution of treating Fibromyalgia. From back in the day when they fobbed you off with Cymbalta, to the time that Lyrica/Preglabin was introduced as the wonder drug. He told me of his personal evolution in treating the disease. How he became frustrated with people who thought it was all just psychological. We clicked. He has written a book on Fibromyalgia. I was very impressed with his site as well, it really resonated with me. Could I possibly have found a doctor who actually got it? All aspects of this demon on my back that has taken over my life leaving me disillusioned, depressed, and wanting to just give up? Could it really be?
We discussed the approach going forward. I have been suffering with trapped nerves in my lower back for years. It has only become progressively worse! I also have such extreme pain in the discs in my neck. I suffer from occipital neuralgia which causes massive pain flares sending me to the ER in tears for pain treatment. Physio helps but isn’t the solution in this instance. We were going to look at finding lasting treatments that will help/eradicate the use of pain medications. Exciting!
The way he explained it is that there is a fire and what my doctors and I have been doing is trying to get rid of the smoke from the fire (pain) but not actually putting the fire out. He was here to put that fire out. I loved this analogy. It made so much sense!
His treatment is based on different pillars of Fibromyalgia that need to be treated such as chronic pain, sleep problems , Gastrointestinal problems etc. Now this is not the only pain I’m experiencing. My pain is widespread. I have extreme lower back pain that has now progressed to becoming so stiff I can hardly bend. The pain in my neck is also debilitating. It’s one of the reasons I stopped blogging. Using a laptop really causes my pain to amp up. I felt that I didn’t want to offer half arsed blogs. I’d rather not blog than remind myself all the time that something I loved, writing, had become this hard.
This is almost like layers of pain and symptoms that have to be dealt with in a similar approach to a checklist. He came around and squeezed my lower back and I literally ended up standing on my toes because it was so incredibly painful as he squeezed. Yup, I had trapped nerves that needed to be released.
I have had numerous pain blocks by the previous pain specialist into these nerves but they never worked. After my last visit I became really disillusioned with her. I was at my wits end. Here she was suggesting these pain blocks and steroid injections again!
She had no treatment plan. She was winging it based on whatever pain I was in when I saw her.
It started to seem like this was becoming a way for me to come back as a repeat customer. Paying insane amounts for each injection – remember I needed injections in my neck and lower back and this ran into thousands in CASH for me. So why was there no permanent solution? Why in all these years had she not gone in and released the nerves when the injections were so obviously not working?
She also had this weird policy of wanting a rude amount of cash upfront before performing any procedures in theatre – over and above what my medical insurance was paying her!
I came to understand that she was semi-retired. She now has grandkids and regularly goes on vacation to the grandkids leaving myself and other patients unable to fill our scripts!
You are then required to go and pay a GP for a script to cover your meds until she comes back. Then you see her and pay for that too? Woman, what??? I wouldn’t mind if this happened once or twice a year (Doctors have lives too!) and there is some fair warning that she would be away. This has now turned into a regular occurrence. I called for my last script and was told that she was basically away for a month and I would have to see another doctor for the script in the meantime. She also only consults twice a week.
I feel that with chronic diseases you enter into almost a marriage with your specialists. They are or should be in it for the long haul. After 3 – 4 years I came to realise that I was making no real progress with her. I started feeling like a cash cow. She would offer the injections every time she saw me. The cost of each injection was extreme and I would normally need more than 10! Not only was it not working, it was also wildly expensive! After my last visit I realised that this was just not going to work – ever. She was not invested in me actually getting better. Just being a repeat patient paying crazy amounts of money for things that did not work. It was time to take back my pain management and find the right person.
After doing some research on Fibromyalgia specialists in South Africa my husband found this new pain specialist. His website was so exciting! It offered so many different treatment options that I had even been aware of! I had options? This sounded too good to be true!
It was time to go onto the next chapter of searching for a pain-less life.
I may never be pain free but reducing my pain is imperative. I’m currently on disability. I want to be able to have a better quality of life and the only way is for me to pick myself up and try again, like I had done so many times before. I just have to find the wherewithal to do this, as daunting as it seems.
My appointment ended with us deciding on two things that would be done in theatre (no cash upfront payment!).
He had a pic of what he was going to do to my neck. We were starting with the radio frequency ablation to all the discs in my neck, on both sides.
For my lower back he was going to go in and cut the tissue/ muscle (depending on how trapped it was) to release the nerves. This sounded heavenly. I can’t remember what it’s like to not have painfully trapped nerves in my lower back. This too had a whole sheet with pics explaining the procedure. I was really happy that he took the time to explain both of these modalities in detail and also had me sign to say that I understood the procedure and the risks. Risks? Pshhh I would take my chances. This my friends is what desperation to be free of pain looks like!
There was much more to come. This was scraping the surface of dealing with my Fibromyalgia. He would also have me in hospital for 5 days to do ketamine infusions amongst other things after we dealt with the pain he could physically reduce.
The most important part? I had a plan. WE had a plan. Things were going to happen and I was excited although cautiously optimistic. I’ve been excited and disappointed too many times before. One thing those closest to me said to me was that they were experiencing me being optimistic. I finally sounded optimistic about the future of my pain journey. This really encouraged me!
We set the day for me to go into theatre a week later so that we could initiate the treatment plan.
I didn’t tell many people that I would be going in. I was scared of being disappointed but then also for some reason…. Terror gripped me! I became anxious!
It was a good thing that for the week leading up to the theatre situation I was kept busy. I only had two days beforehand to be anxious! I had been pushing it out of my mind and focused on my visiting sister and brother in law and my lovely little nieces and my Goddaughter who came to visit before having to write her final exams.
I would like to take a moment to say that my niece Nuhaa had made it to nationals in gymnastics. I was ecstatic for her! She really worked hard and persevered for years to get her spot in nationals. I am very proud to say that she placed 9th in the entire country! She is such a beautiful child and so deserving of this huge achievement! I don’t think she has even quite realised that she is ranked 9th in the entire country!
See… what a great distraction!
Listen, when anyone is messing around with your spinal cord and nervous system, things can go horribly awry. I was quietly crapping myself. What if something went wrong and I was left lame? Only one of the awful thoughts zooming around in my head.
Now I knew that the stitches / staples were going to have to stay in for 21 days in my lower back. I knew from what had been explained to me that my movement would be very restricted e.g zero bending etc.
Boy oh boy … I never, never anticipated what was going to happen post-surgery! Nothing prepared me for this!
You have to come back for the next part. Explaining everything that happened, pre, during and post surgery is quite the story! It needs a post all on it’s own! As we know… nothing is straightforward in Tracey’s world. Things can’t just be “normal”. Oh no, that’s just not how my life goes. It is at the very least… interesting? I can’t say exciting because some of this crap is not exciting. My life is a comedy of errors of sorts!
I will get the next part out as soon as I can. I am keen to share my journey with you. Even my doctor has encouraged me to share it to help bring awareness to the complex life of Fibromyalgia victims. It will also help you understand why I went radio silent for a while!
I’m still battling. Recovery has been much harder than I thought, so, as I am able to, I will update you on my social media accounts as well as my blog.
Please come back to find out about what I can only describe as “ WTF I DID NOT ANTICIPATE THIS!” as I describe the theatre antics and how the post op horror/comedy.
It felt good to write another blog post. I will be doing it more regularly as I have been inspired by occurrences where I realised that my blog actually has been helpful to some (will tell you those stories in another post). I’m glad I’m back to blogging. I hope you are too!
Stay safe everyone!
I look forward to sharing the harrowing next chapter in this story! Talk about a Halloween themed post!
PS: Follow me on Instagram at @_mychroniclife for more updates.