To my next doctor: A brief history of my pain
I have pain in the right side of my pelvis. It’s chronic — this pain taught me the meaning of the word.
Chronic: (of an illness) persisting for a long time or constantly recurring.
I have had this pain for two and a half years now.
What does it feel like?
I have difficulty describing what it feels like; despite how many times I have had to.
I have described the pain in my leg so much that I am tired of doing it. I don't want to talk about it anymore. I don’t want to explain to new people why my leg hurts and how I live with the pain perpetually. I don't even want to explain it to doctors. I don't want to describe the pain because I am tired but also because I have never quite known the words for it.
English, I have found, is terribly equipped to describe the range of feelings we can feel.
In 2020, when the pain started, I tried to keep a journal. Here are some of the ways I described the pain in that journal:
Area: Side of my pelvis
Sensation: Like there’s a substantial dent against the side of my leg
Area: Right foot
Sensation: A slight cramp that makes the leg feel uncomfortable. The foot feels closer together and the toes feel sticky
Area: Side of pelvis
Sensation: Throbbing pain
Sensation: Slight cramp in the middle of the foot and the toes
Area: Back of calf
Sensation: Similar to a sheen splint but light
Area: Inner thigh
Sensation: Same as the pelvis
Area: Side of pelvis
Sensation: Painful to walk
Sensation: uncomfortable to stand
Area: inner thigh
Sensation: uncomfortable to stand
Sensation: a swollen sensation
In 2020, when I was seeing a new doctor every other couple of weeks, I started to dread the question: describe the pain.
How would I describe the pain? I couldn't even identify the very specific region where the pain was coming from. I knew the general area. I knew it was on the side of my right leg — on my pelvis — around my pelvis — on my butt — wrapping into the inside of my thigh — throbbing down my legs — somewhere here — but nowhere specific.
I would generally gesture around my pelvis.
“The pain is around here doctor. “
Sometimes it radiates down.
I feel it when I stand for longer than a few minutes (cooking became hell)
I feel it when I walk for longer than a few metres (travelling is no longer fun because I know that it will mean more pain than normal. how can something so beautiful become so painful)
I feel it when I run (but I have had to stop that altogether)
I feel it when I am lying down. When I lie down on my belly, I feel it in my bum. Sometimes I just lie here and try to imagine the throbbing.
Over the past two years, the pain has faded into a dull consistent presence. Or I have learnt to tune it out, into the background. I experience the pain the way people with tinnitus experience the noise.
If you pay attention when around me, you will notice that I quickly find a place to sit down — sometimes that place might be the floor. You might even notice I walk with a slight gate but I hide that very well.
What happened? When did it start?
Sometimes this question really gets under my skin. Around the time when this pain came into my life, I was still finding language for the waves of depression I would occasionally feel. It annoyed me when people asked me ‘what happened.’ It was never that something had happened, I had suddenly begun to feel this way. I had suddenly begun to feel sad. Nothing happened. People would insist that something must have triggered it. Something must have caused this descent into sadness. I never felt this way.
So in the same way, when people asked me what happened to my leg, I did not have anything satisfying to say to them. Because nothing of any great significance had happened. I did not have a fall. I was not in an accident.
The most significant thing that happened around this period was that I ran a marathon. But I am not the first person to run a marathon. I was not even the least fit person to run a marathon. I trained for it for 6 months. This, aside from the fact that I nursed an active running habit. I ran 3 times a week on average, usually clocking 90 minutes of cardio. I had a low resting heart rate (the mid-40s) not because I was ill but because I was that active. I was an athlete.
I picked up injuries over the course of my marathon training. Injuries you would expect an athlete to pick up. I took care of myself. I stretched, I rested.
After the marathon. I felt fatigued as you might expect. I rested again. For a week. Then I started doing easy runs. But as my fatigue faded out, this pain in my right leg started to rear its head. At first, I thought it was leftover fatigue but when it was clear that it wasn't planning to go, I started to worry.
I never got to do long runs as I used to and I had to take my runs all the way down. Eventually, I only did 1km walks.
By this time, covid had shut the city down.
Soon after, I noticed the pain had begun to feel unbearable. It would not let me stand. It would not let me walk. It would not even let me lie down in certain ways. My life was dramatically affected.
One morning, in the middle of the lockdown, I told my parents I couldn't bear it anymore. The pain was an 8. Maybe I had a fracture I didn't know about. Or a dislocation. My dad drove me to the hospital because as a higher level Government worker, he was considered essential.
Rate Pain and mental wellbeing (no and description)
How has it impacted your life?
No one ever actually asks me this question. No doctor.
I try to, of course, include it in my description. I tell them, this pain is impacting the quality of my life. I tell them I used to be an athlete and now I can’t even run. I tell them and I swear I try to express how serious this is to me but I am not sure it ever quite lands.
I went to the hospital a couple of weeks ago for the first time this year. After doing this for so long I have become tired of the experience. I know that nothing new will happen. What else will they do? More than that, I am not looking forward to a doctor not matching my level of concern.
I will sit in that chair and I will in my heart be crying for help, crying to return to what I used to be, crying to live a life without this. And the doctor will look at my x-ray which shows nothing out of the ordinary and ask me to take some painkillers.
I remember one day in June 2020. I was having a debate with my friend who is also a doctor. I was telling her that it was sort of upsetting the way doctors are never able to mirror your level of concern and she was explaining the doctor’s perspective to me. She was saying that doctors are mentally checking the possibilities and they can probably tell that the thing is not as serious as you are making it. This is coupled with the fact that they are underpaid and overworked.
We were talking to each other but, in the moment, I guess I wanted her to be my friend and not an advocate for doctors. We got on a call (we had been texting) so we could talk more clearly and I could properly express what was making me so unhappy about my hospital visits. And out of nowhere, as I was trying to say how it felt to me when the doctors didn't mirror my concern, I started to cry.
I hadn’t planned it. I hadn't even thought about the sadness of the situation. I didn’t even know how sad I was. I think it had been 3 months of pain at this point.
I was just crying. I couldn't finish my sentences. And I was so confused. Why was I crying? I was trying to tell her how I could no longer do the one thing that had more or less become the bedrock of my identity. All my friends knew I was a runner. I was so proud of it. And now it was gone. And the doctor couldn't even understand what I meant when I said this was affecting my life.
And I was crying and it was so confusing and… It felt like I was cheating in our conversation because now she was telling me sorry. I didn't want her to be sorry for me. This was a debate!
The next time I cried was a few months later.
By this point, I had done two X-rays of the same pelvis. They both showed nothing. I had seen 2 general practitioners and I had seen one orthopaedic doctor. The orthopaedic doctor suspected that maybe my pain came from my back but he didn't investigate or do anything about it. He simply asked me to religiously take my pain meds. I was on a mixture of different pain meds from March to November 2020.
Then I decided to see a different doctor. A different orthopaedic. Maybe he would take me more seriously. I got to the hospital with my X-rays and reports and I sat in his chair and I told him about my pain and all the doctors I had seen and how I was an athlete and had run a marathon. He looked at my X-ray, looked at the lab report, and looked at me. And then he told me I might have early onset arthritis. Said it came from another condition that affected really tall people. I am very tall but I am not out of the ordinary tall. I would be short in the NBA where the average height is 6'6 (I am 6'4.)
He told me I would never run again. He said I needed to change my bed. I need to change my chair. I needed to manage myself.
I remember so well sitting in his office trying not to cry in front of this stranger.
What does he mean I will never run again?
By the time I walked out of his office, my eyes were cloudy with tears. I could barely see, barely walk. I got outside and I called my friend and I just bawled. I bawled for minutes. I am so sorry to her that I called her simply to cry but I needed to not cry alone.
When I left the hospital, I went to another friend's house and I cried some more.
I have taken a lot of them. I don't remember any of the names. After the first 6 months, I decided I wanted to avoid taking pain meds because without anyone telling me, it just felt like it wouldn't be a good thing to perpetually pop painkillers for the rest of my life. They also weren't helping all that much. It wasn't like they dulled the pain.
In fact, the pain has recently flared up and the flare just so happens to have coincided with me starting a new drug regimen.
I have also taken a lot of orphenadrine. This is the only drug name I remember because, with a lot of my early doctors, it was a constant.
Towards the end of 2020. I did an MRI (Which is apparently so much more expensive than an X-ray and also you have to change into a hospital robe for it) The MRI was the first test I did that showed something abnormal — a disc bulge. A small one, it didn't even touch my nerves, not obviously. I did physiotherapy for this. It involved being pulled out by a machine, massages and an exercise routine. I had 12 sessions with my first physiotherapist, each session cost me 15k. At the end, the pain wasn’t gone even though it was apparently meant to be. Or at least I was meant to notice a difference. I changed my physiotherapist because I couldn't afford them anymore and I went to one covered by my HMO. I had 6 more sessions with exercises, massaging, an electrode + heat treatment and regular cycling. Outside these treatments, I did exercises at home and started going to the gym on my doctor’s recommendation. At the end of 18 sessions, I was not really any better than at the beginning. I continued the exercises and admittedly the pain wasn't as bad as it had been when it first started but it was very much there and all it took to bring it out was walking more than 4000 steps on any given day. This, for a man that previously did 12000 steps on an average day. I always walked the long route home from work just so I could listen to podcasts. Very often I did long runs that were well over 15000 steps by themselves. And now a 4000-step day was a bad day.
The universe is a cruel joker.
What is really wrong?
The truth is I don't really know. I don't have any boney issue, that one is for sure. I had the disc bulge show but it was light and all my physio didn’t help.
There’s that one doctor that said I had arthritis. I saw him again recently about a newly developed bad knee and he recommended I stopped going to the gym because it was wearing off my body.
Am I the first person in the world to attempt an active life? What is so special about me that means that my body must fail at every attempt to do something ‘healthy’?
When the pain first started, I was obsessed with trying to figure it out and so did a lot of research to see things that had similar symptoms. The most notable were
- Gluteus Medius Tendinopathy, or Dead Butt Syndrome
- Iliotibial band syndrome
- Trochanteric bursitis
But I don't really know, because 2 years on, I still have this pain and I am tired. I am so so tired of everything. And I am tired of talking about it and I just want to be normal.
Some time ago, I was looking at people at the gym and someone was talking about how fatigued they felt after doing some squats and I just realized I didn't know what that felt like. I had stopped doing squats when my knee started hurting this year and apart from that, I was already always in pain. I don’t remember what it feels like to not be in pain.
This is a summary of the last two 30 months. There is so much more I have not included.