My Journey with Fibromyalgia Part 1: In the beginning…

I’m writing about this because I am still in excrutiating pain despite really strong painkillers and physio. It is an invisible disease but so incredibly debilitating.

Twelve years ago I was diagnosed with osteoarthritis in my neck. Ever since then I suffered with neck pain that caused me to suffer with terrible headaches and unbearable shoulder pain.

Osteoarthritis is a degenerative disease meaning it will only get worse. You can try and slow down the process but invariably it will deteriorate. What happens is that the cartilage between the vertebrae disintegrates leaving you with stiffness and lack of mobility as well as pain when trying to move those joints. The cartilage that helps facilitate the movement isn’t really there anymore so you have almost bone on bone. I’ve since developed this in other areas of my body.

I was diagnosed by an orthopaedic surgeon. His course of action for me was to do traction and facet infiltration. The traction helped because what happens is your bones start pinching nerves in your neck. There is very little space between vertebrae because the cartilage has disintegrated. So you get the pinching. Man is it sore! The pain radiates down your arms. Remember alot of nerves are in that area. Pinching those nerves means whatever it pinches, you will feel the pain that corresponds to that nerve. So he would have me go into hospital and have traction.

Basically they hook your head up to weights with a harnass under your chin (so sexy right?) that pull at the back of your neck. This opens up the spaces between the vertebrae. It was a painful enough process to be medicated with pethadine (some really strong stuff) during your hospital stay but at least it released the trapped nerves.

It was really funny because I was in the orthopaedic ward and I was in my late 20s surrounded by really old women!!! Traction treatment was done with me being on the weights for 2 hours and then 2 hours off the weights. I would become the little helper in the ward everytime I went! Those little old ladies sure loved their pethadine fix! They would send me to the nurses to tell them it was time for our injections! My orthopaedic surgeon would always laugh and say I had the neck of an 84 year old woman.

I then developed problems with my sacroiliac area. I’ve shown a pic of this in one of my previous posts. We did traction for this as well. It was like a belt with weights hanging from the bottom of my bed. So imagine me in hospital with my neck in a harness with weights attached and a harness around my waist with weights attached!! Looked like something out of the movie Saw!! I was being pulled in different directions and no, it did not make me taller like I thought it would!

Traction I could deal with… but when I had to go for facet infiltration. Oh my God!! The trauma!!!! So what happens is they need to shoot you up with steroids between your vertebrae. To do this they need to have you on the x-ray machine to guide them between the vertebrae in case ,God forbid, they hit a nerve or something. A delicate procedure. It involves a very long, thick needle. You are required to remain completely still in an awkward position. One wrong move and you can have some serious trouble.

So I’m on the x-ray bed. They have sprayed my neck with antiseptic stuff. The doctor and two nurses are there. It’s cold and I’m shivering. I look over and see the array of long, demonic looking needles. Huh uh. Whoa cowboy. “Um, can’t we do this under anasthetic?” I ask, my voice cracking. This was back in the day when needles made me faint. “Unfortunately not he says. We need you to be awake so that you can indicate when you feel us hitting a nerve” (later learned “indicate” was screaming).

Time to get started. I am positioned. To my complete shock a huge nurse comes and lays on top of me to keep me in position and from moving! What fresh hell is this?? It’s a long thick needle. It goes in and I can feel it scrape against my vertebra. OH MY GOD. This is number 1. I have 5 more to go. I keep my eyes closed and repeate the Our Father. I can feel the sweat dripping, my chest tightening and becoming clammy. I’m willing myself outside of my body. Far, far away!

Second needle. “You’re doing great!” the doctor says. “Mm hmm” I mumble through clenched teeth and lips that are being bitten on so hard I’m afraid it might bleed. All of the sudden this extreme, unfamiliar pain hits me. “Oh fuck” I half scream! I just blurted it out. Inadvertently. “Ok sorry, sorry we hit a nerve” the doctor says. NO SHIT! Now I’m really starting to feel faint. I start to try and mentally distance myself from my body. It happens twice more with me inadvertently screaming again. “All done” the doctor says. “You were really great!” As I have many more of these facet infiltration sessions I always hear this afterward.

The doctor says “I don’t want you to move. Lie here for a while.” He instructs the nurses to get me water. They spray something on my throat to stop the bleeding caused by the needles. I’m dizzy. I want to throw up. They can see I am going to faint. Eventually I come out feeling very fragile and very sorry for myself. I almost feel like they accosted me. Held me down and did things to me while I was incapacitated and helpless. As we leave the tears start to flow. It was a traumatic experience for me! Now I am not a crier so when I cry Irfaan knows it’s serious. He comforts me and I give myself licence to gobble cake. You know, because traumatic. I had many more sessions and became desensitized to it. It became perfunctory.

Okay so he was treating my wonky joints but the muscle pain and spasms were unbearable so I almost felt like there was no relief. I started seeing a physiotherapist as suggested by my orthopaedic surgeon. She was great. She was ahead of her time and knew my orthopaedic surgeon and they were in contact about a treatment plan for me. She would do alot of work with me. Even doing hot stone massages. Using her magnetic machines and gadgets on me. The problem was it didn’t put an end to the pain. So what was going on here? My joints were being treated and I was having regular physio so surely there would be progress?

I had another hospital stay after I had a pain block epidural for my lower back. While I was in hospital I was in serious distress with muscle pain. My orthopaedic surgeon arranged for me to see a neurologist. The neurologist did a consultation with me and did some tests and said that I had fibromyalgia. That was 9 years ago. He sedated me and put me on a course of medication to treat the fibromyalgia.

I got home and started the medication and developed a serious reaction to it and stopped it immediately. I started reading up on fibromyalgia. Yes I had the symptoms but I refused to believe that I had this disease.

I had the impression that it was more a mental condition and I totally poo poo’d this disease. Oh puhleaaase! I don’t have this. I don’t have mental issues! This was my understanding of it based on the information I read on the internet. At that time there wasn’t neaaarly as much information as there is now. I thought weaklings got this. It was imaginary… little did I know what was to come…

Come back for Part 2!