Blog, Disability, Uncategorised

Let’s play “What the fuck is wrong with me?”

I have an invisible disability, an undiagnosed one at that. Which makes things difficult because people tend not to believe you if that’s the case. I’ve had a few tests done over the years, but no conclusion beyond my spine “shows signs of early wear and tear”. Everything else has come back clear.

So let’s play a game of “what the fuck is this?”

It started when I was 24, one morning I woke up with shooting pain in my back, right between my shoulder blades. My back was also solid, I could not move it at all. And any attempted movement sent pain shooting up into my neck and across my shoulders.

Since then I’ve developed pain elsewhere, here’s the summary.

Back
Pain mostly between shoulder blades.
When the pain is bad a bump appears at the base of my neck.
There is no movement in the vertebrae between my shoulder blades at any time, even if someone puts their full weight there.
Only relief is stretching forwards; being upright, leaning back or twisting are agony and/or not physically possible.
Standing or sitting feels like my spine is being compressed from the top.
Feels like there’d be some relief if someone could just insert something between the vertebrae.
Pain radiates up into neck, across shoulders and down into lower back.
On my worse days the pain is in my lower spine too, it also feels like it’s bring compressed.
Pain in back is mostly a heavy dull ache, but occasionally it spasms and then the pain is sharp and hot.

Arms
Next area to feel pain was my arms, specifically elbows down to wrists.
Similar pain to my back, dull ache with occasional spasms.
Pain runs mostly from elbow to wrist along the inside of my forearm.
Hurts to move joints, wrists are the worst, benefits from being kept very still.
Feels like someone is sticking red hot knives into the side of my wrist opposite my thumb.

Hands
Pain spreads from wrist to fingers.
Joints in fingers ache and hurt to move.
Occasionally losing grip on items – keys seem to be the main victim to this.

Hips
Most likely a result of having SPD in both pregnancies, but adding just in case it’s relevant.
Shooting pain in hips and pelvis. Mostly on either side of hips and right at the back of my pelvis, occasionally feel pain underneath somewhere between my vagina (side note: the nexus refuses to type vagina) and my anus.
Pain similar to that in my wrists and back, feels like red hot knives jabbing me.
Hurts to bear weight and move, occasionally locks up so I can’t move.

Legs
Pain constant in both knees, hurts to move them, hurts to stay still.
Like back, pain mostly a dull ache, but often flats up into the hot pain.
Bearing weight seems to be the worst thing, finding stairs a challenge as it jars my knees.
Pain is mostly in the underside of my knee caps, feels like I’m missing padding.

Other health problems that might be related
PCOS – painful ovulation, hirsutism, heavy periods, pain so bad it’s hard to straighten up.
Depression – long term, not necessarily related to events.
Hormone problems – high levels of hormones cause nausea and vomiting, as shown by severe hyperemesis in both pregnancies, which also occurs when using hormonal contraceptives.

I think that’s everything, no idea if these are all related or if they are just coincidence.

Treatments I have tried
Four lots of physio- Helped ease pain a little bit but plateaued and wouldn’t improve further.
Chiropractor – small amount of movement achieved, sorry lived though.
Diclofenac – Used to work, but not any more.
Cocodamol – Same as above.
Tens machine – Helped but allergic to the sticky pads.
Tramadol – No effect.
Diazepam – No help but at least I was too spaced to care.
Massage – Small amount of relief.

Doctors mostly seem to be out of ideas now, so does this seem familiar to anyone else?

2 thoughts on “Let’s play “What the fuck is wrong with me?”

  1. Have you been checked for hypermobility? The dull ache with stabbing spasms pretty much all over is exactly how I’d describe my pain. When my whole back is bad (my pain is usually neck and sa joint) it seizes up completely. Also would tally with spd in both pregnancies, and possibly hormone levels. Tramodol having no effect is common too.

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