I have my first appointment with the Pain Management Team on Monday and I’ll be honest with you, I’m dubious.
I get this feeling that pain is something to be dealt with in a matronly fashion with all this fuss and nonsense put away just so. We’re going to manage this pain out of a job. Actually I quite like the idea of firing my pain….
There are lots of people who post happy positive posters about not being their diagnosis and being pain / EDS / CRPS warriors. They appear to be using all of their energy convincing the world that inside them is a healthy person trying to get out. I’m sticking with my stoic approach. It’s worked for me for a long time. Let’s look at the objective facts:
– I’ve been in some form of pain for as long as I can remember
– I’ve been seeking help for specific joint pain since 2004
– I have a lifetime diagnosis of Ehlers Danlos
– POTS & CRPS are not permanent diagnoses
– I have 3 degenerated discs in my lower back, my neck hasn’t been MRId but the headaches and arm pain suggest similar.
– I’ve not had an upright MRI to show how my body responds to gravity. That’s expensive.
– At this moment, my mobility is bad. Powerchair bad.
What’s the absolute worst that could happen?
I get worse, or can’t tolerate the pain levels and have to stop teaching completely, rather than my current lame attempt at being a real person and teaching from my wheelchair which has varying degrees of success.
Is that the absolute worst? Seriously?
No, it’s relative to current situation, but I refuse to entertain any darker thoughts about remaining in this much pain. There are much darker thoughts. They pop up more than I care to admit.
When I look at those people who are ‘pain Warriors’, I know that’s not for me because for me, there’s no point wasting energy I don’t have pretending not to be in this situation. It sucks yes, but this is my reality. Denying that pain, or joint dislocations exist is the kind of stupid “I’m fine!” attitude that landed me in a chair. That and shitty genetics.
So, apparently we will “manage” the pain better and hey presto, angry cornered animal returns to serene Swan. Pain management seems the way forward. Or at least it’s the thing that all the specialists have said after they shrug and tell me that they’re not that well versed in EDS, or POTS, or CRPS, or any other medical acronym that has stuck itself to me like an irritating bur over the past few years… Months ago I was sent a pile of questionnaires to complete about my pain. A whole host of the questions in these were vague and repetitive. For a (computer) scientist who finds holding a pen painful, I want a to the point assessment with minimal writing – online if possible. I don’t want to fill in three million on a scale of 1-10s about how much I can still do “things”… what things? I still enjoy eating cake. I’m not such a fan of rock climbing these days.
They even included this one. Twice. The pain is zen. I am the pain. The pain is everything and everywhere. It hurts…. HERE. As in, in this room.
It put me on the defensive because the data analyst in me extrapolated 3 questions from all of these questions:
1. Are you faking it?
2. Are you a hypochondriac?
3. Are you mentally ill?
No, No, and no but I’m starting to wonder. I’m in chronic pain & like Obi Wan Kenobi, you’re my last hope.
Anyway, my appointment came through telling me that I would be seen alone and then they would decide if my companion could join us. Err, no. He’ll be coming in thank you. Do I sound a bit defensive? I guess I am. This is now my bog standard reaction to medical professionals that scare me. And anyone who may want to physically examine me, stands a very real chance of holding a disembodied limb by accident. This was the case with the Rheumatologist who just put that shoulder back where he found it and hoped no one noticed. I did notice. It hurt.
When I was pregnant I growled an obstetrics consultant out of a room backwards when he suggested I wasn’t helping my blood pressure by getting angry at him & that high BP makes women “a bit crazy”. Again, in seething agony from what was diagnosed then as SPD and spontaneous labour, I wanted to be listened to and given answers. Not patronised.
Exhibit B: every nurse / anaesthetist who scoffed at my suggestion that I’m hard to get blood from. I tried donating, the British Heart Foundation lovely lovely nurses declared that I bleed less than a well done steak. The 15 minutes, 2 nurses, & 3 pediatric needles required to do my blood test last week ought to be proof. The cumulative result of people not listening to my knowledge of my body was an anaesthetist running around my head shouting “Shit! Shit! SHIT!” After yet another canular collapses and my BP plummets mid c-section. Everything goes white…. the pearly gates rang out the expletives of a tubby man in scrubs who knew better.
Exhibit C: The NHS Rheumatologist who I pinned all my hopes on (because whilst the Hypermobility Clinic is amazing, it’s also expensive) then pulled out my shoulder & caused me to pass out during the physical after sending my HR through the roof. After all this, he tells me that Rheumatologist don’t deal with EDS, that my pain is caused by lack of sleep, POTS is just deconditioning, thank you and goodnight. No interest in helping to check the other symptoms (difficulty swallowing, brainfog, gastric issues, weird bladder, steaming headaches). Since then, GP has referred me back to London & a cardiologist. Still stuck on the GI front until I can’t eat solid food at all. Nice.
Exhibit D: Physiotherapists. Who, to give them credit probably know far more about the body as a whole than orthopaedic consultants. But traction is not the answer for everything – actually, the answer to traction was permanent nerve damage. Pain when you have unstable joints is not gain, it’s pain. I’m not sold on infrared… waving a light over a slipped disc (or 3) then charging me £60 doesn’t seem all that worthwhile. And the NHS ones recently refused to see me after a telephone consultation because they only do one body part at a time and I’m just to darn complex. A&E keep referring me back to physio after each major dislocation, but they’re not keen.
So here I am staring at Pain Management. I’m on day 5 of a CRPS flare that makes me want to hurt people as throwing my whole basket of drugs at it, just about keeps me at a point where I’m coherent. But not sleeping. They’re going to want me to put into words what it feels like, I can describe EDS pain, but CRPS is different and less obvious externally. So I’m going to take this post with me so I don’t forget (or if this continues, in leiu of speaking).
What does my CRPS feel like?
It’s based around my pelvis. I visualise it as a the facehugger from Alien that is more of a arse man. It’s attached itself to my SI and sunk it’s teeth in. On a good day, it’s teeth are made of glass and it chomps down if I stand, or sit, or don’t shift about enough. The glass grinds in my hips. Stretching helps release its jaws, but it’s temporary, so I keep it sedated with Gabapentin.
On a bad day when it flares, the facehugger is grinding it’s glass teeth together and I can feel my SI move (I know it’s not meant to move, but I, and everyone around me can hear the audible hollow clunk of it slotting back into place. Sometimes I can do this just by clenching my buttocks). On a bad day, it has tentacles that weave their way into my hips and legs making them twitch and shake and pulsate with waves of lightening pain. It leaves my feet feeling like they’ve been painted with acid and they burn. On a bad day, the face hugger’s arms extend up my back and poke around with the trigger points in my shoulders. Instead of having standard sore & knotted shoulders, they are white pain that screams. On these days I cover the facehugger with heatpads and hot water bottles, I use the metal in my wrist splints to rub the aching from my thighs and knees until it’s just the fizzing electric pain left, I keep taking the gabapentin and add oramorph which does little for the CRPS, but reduces the acute pain from today’s subluxations which doesn’t take the level of pain down, but turns the volume down enough to focus the heat and TENS on just one place. TENS helps. It messes with my brain and fools it into listening to the prickly pain of the machine up at full volume. It’s like drowning out the screams of Dante’s 7th circle of hell with death metal music. Neither are particularly soothing, but the latter is more tuneful.
I’d rather dislocate daily than have regular CRPS flares. A dislocation is a deep purple pain that makes you feel sick. You can RICE a joint and you know what the worst is – a bit like childbirth. We’ve done this before, go through the drill and at the end register another shiny new bruise that won’t let you sleep. The CRPS facehugger isn’t like that. It dozes off, then wakes up with a start and clamps down in different places and with different types of pain.
This week we added a great big swollen red foot to the fun and games. By the time I took the photo, my toes barely moved from being so puffy and my ankles had all but gone. Did they hurt? Yes! But we replaced the chemical burns with the feeling of having water balloons for feet. They felt like they might burst with any pressure. Yum!
This seemed like a really negative post, but actually by using personification for my CRPS, I’m able to relax through the worst of it. By making it into the “ButtHugger” I can explain it to the kids who see me wince and yelp in pain.
If it’s a “thing”, then I can tell it off and to sling it’s hook.
I’m not holding onto my diagnoses. Im pragmatic. I’ve worked out ways to continue with life. There are therapies like hydro & massage that I’d love to do regularly but don’t have the resources (or can’t find a pool with a hoist that isn’t for horses in the whole county!) . There must be exercises I can do without dislocating, and I will find them.
This isn’t the end Butt Hugger.
Edit: post appointment – actually, despite my reservations, the pain management appointment went incredibly well. They were very supportive and entirely understood my concerns about dignity, mobility, and EDS. They were less aware of CROS, but were willing to learn. These ladies are keepers.
Thank you to Burning Nights for featuring this blog post on their website. Please follow them on Twitter at @BNightsCRPS ( and me on @ExpectZebras )