Lost curve in lumbar spine, apparently it's now straight - cause of my pain?!

[Sara_A]

Hi, I have sle and APS etc etc and horrendous low back pain with my sacroiliac joints mainly over past few yrs. I also started with pain lower spine and I get pain at the top of my back and neck but more muscular in top of my back.I find things like bending and hoovering crippling and by the end of the day I'm in so much pain and discomfort I'm snappy and irritable with everyone and could honestly just go and walk in front of a car sometimes (not In a suicidal way if that makes sense!!?) I'm on a lot of meds and currently weaning off zomorph which I've been on for almost 7yrs and I'm now on pregabalin which I've found to help a lot but I'm still obviously having some pain.

Anyway I'll get to the point..my pain nurse wanted me to go and get a physical examination from a physiotherapist to rule out anything sinister due to my increased pain at present so i did and he touched my painful areas to which i nearly screamed the surgery down each time and he said that i have lost the curve in my lumbar spine and that it is completely straight which it shouldn't be. This is what is causing me so much pain and my si joints have a problem too. I have inflammatory arthritis too sorry forgot that!

He said i have to be so careful now with my back no standing or sitting for too long, no heavy lifting (i cant/don't even lift a basket of washing now anyway) exercise regularly, stretching, backcare...

Everything is all compressed all the parts inside my lumbar spine. I'm only 43 yrs old I've just had to fully medically retire from nursing will never work at all again, my pain is so bad atm I'm struggling every day with it I already have osteopenia from steroids and am still on them my rheumatologist says I'll never be able to stop them.

Does anyone else have this?? He said I may get some curve back it is possible if I did all this and obviously lost some weight too.

How do other people cope with this problem?

Thanks sorry it's so long!

[Dustb]

Hello Sara. So sorry to hear about what you are experiencing. I have been on Pregabalin, for about 10years, after two operations to fuse 5 slipped discs in my lower back. I've been doing well on Pregabalin as well as Duloxetine.

Fortunately , I don't suffer from any side effects.

I developed Neuropathy which isn't easy to deal with, but, again the drugs have helped.

The compression you talk about I still get that feeling in my back. When it happens, I only get some comfort when I lie in bed, sitting is out of the question.

Like you, I have to continue with Steriod treatment, indefinitely.

I too, had to give up work, at first it effected me so badly, I couldn't afford to stop for one, and I just wanted to work to feel normal. Eventually, I had to get counseling but I can honestly say, it was the best thing for me. After struggling for over thirty years, working and coping with Lupus. I realize it made my life easier, physically and mentally.

I battled with the DWP for a long time. But now I in a better place.

Hopefully, you will be soon. I hope my story have helped you in some way.x

Ryan

[Sara_A in reply to Dustb]

Yes sometimes in the night mainly the early hours I have to pull my legs up into the foetal position to get some relief from the spasms and pain. My partner often has to lift me out of bed in the morning as I'm so stiff and in pain.I am taking 125mgs of pregab am & pm and also 60mgs duloxetine and 30mgs amitriptyline which I wanted as my pain relief rather than the zomorph as opioids are not meant to be good for long term chronic pain.

I'm really struggling with daily pain and the frustration of not being able to do just the activities of daily life. It's so hard not being able to do the things you want to do or you do things and then know you are going to seriously pay for it later or during and just grin and bear it during and say you are fine when people ask if u are ok!

Today I was packing some sweet bags with another mum ready for the school Christmas fair tomorrow and my back was in agony and my friend said are u ok and I'm like yeah yeah, get home 2 hrs later my back killing me but if I don't do these little things now in my life what else do I do just sit at home day in day out!!

Then tomorrow I'll be at the Christmas fair and probably overdo it stay too long helping out, all day cos I want to do it and be like everyone else 'just normal'.

[MusicalFurbaby]

Hi Sara, so sorry to hear about your horrible pain. I have terrible back and neck pain but for the opposite reason - my back is curved in all the places it’s not supposed to be! I’ve got multiple bulging discs which makes it very difficult to bend, and I can’t squat either due to arthritis in the knees. Like you, I find daily life very difficult: unpacking the dishwasher, feeding the cat, even picking stuff up from the floor can be a new adventure into pain. And forget vacuuming! I also have osteoporosis but not from injections; they don’t know why. I’ve had to face the prospect of medical retirement as well, and I’m 41. All this to say, you’re definitely not alone in terms of pain and limited mobility. It can be very disheartening, especially when you see other people breezing about, bending and squatting as they please, without trouble! It doesn’t seem fair, does it? What really gets me is when people in their eighties seem to have more mobility than me…we understand, we’re here for you, feel free to vent as much as you like 🌻☀️🌈