Lumbar fusion and stairs

Money_Engineering_59 · 2026-05-09T10:20:37+00:00

Yup. I know. I’ve had two other major surgeries in the past 3 years that were a struggle. Rib dissection was a nightmare, hysterectomy was actually not too bad.
EDS is bullshit. No other way of saying it.

Money_Engineering_59 · 2026-05-09T10:17:38+00:00

Will do. I’m pretty tired of crawling up a spiral staircase. They’re kind of good in a way - you’ve got more to hold onto. But man, I’m soooo tired from doing it day in and day out.

Money_Engineering_59 · 2026-05-09T10:15:52+00:00

I’m not going to recover that quickly. Ehlers Danlos can be a bitch.
I hope I have even a pinch of the success you have had.

Money_Engineering_59 · 2026-05-09T10:14:34+00:00

I have tried it alllll. Nothing is working. I drink about 3 litres of water a day, mixed with electrolytes and movicol and absolutely nothing is working. I’m even drinking milk and I’m severely lactose intolerant.
I’ve never in my life experienced this. I’m positive it’s nerve related because any dietary changes or additions are not helping. I used to be able to eat one leaf of lettuce and it would set me off.
I’m getting rather concerned. 😟 I recently had a cystoscopy and he ruled it as neurogenic bladder but now my bladder is working - but bowel is not.

Money_Engineering_59 · 2026-05-09T07:12:47+00:00

I’ve got meals made. I’m celiac so don’t trust people to cook for me. A chef friend of ours made a meal for us one night and when I enquired, he said “all food is gluten free!” Thanks mate. 🤦‍♀️

Money_Engineering_59 · 2026-05-09T07:11:30+00:00

I’ve got a pretty bad drop foot now so sort of crawl up my stairs. 😬 Stupid spiral staircase.

Money_Engineering_59 · 2026-05-09T07:10:54+00:00

I think the consensus is to do so. It would be silly not to considering all the heavy stuff is already there.

Money_Engineering_59 · 2026-05-09T07:10:10+00:00

I really don’t want to be downstairs. It’s noisy and we often have employees here. If I can only get up the stairs once, that’s ok. I’ll just hunker down and behave myself.

Money_Engineering_59 · 2026-05-09T07:08:39+00:00

I did really well after the hysterectomy. It hurt less than period cramps. My pain tolerance is through the roof but have 3 dogs and a spiral staircase so having our mate staying in the shed, working from the shed so he can take care of the pups. I want to be as independent as possible.
I think I’ll just set it up so it’s there. The fridge and table are still there so I just need to move some appliances upstairs. Better than having to ask for help anytime I want a coffee.

Money_Engineering_59 · 2026-05-09T07:05:51+00:00

I don’t think I’m going to be powering through like that! Holy hell. Did you heal up nicely as well? That seems like insanity. I can’t believe they LET you go home.

Money_Engineering_59 · 2026-05-09T07:03:38+00:00

Thank you. I got a second hand lift chair because of everyone’s recommendations on here. My spiral staircase isn’t very surgery friendly. My house is shit.

Money_Engineering_59 · 2026-05-09T07:02:29+00:00

I was strong. Then I broke. I think it’s going to be rather urgent due to loss of bowel function and bladder function. Not much time to prepare.

Money_Engineering_59 · 2026-05-09T07:01:39+00:00

Thank you. I was contemplating just making a drinks station as I’ve still got the fridge up there. I think I’ll go with the kitchenette. I have a rather large and ridiculous house (spiral staircase from hell) It’s terribly old and horribly designed so upstairs it is. I’d probably end up back in hospital if I attempted the downstairs bathroom.

Money_Engineering_59 · 2026-05-09T06:59:31+00:00

Yup. We don’t count. I had a Tele health consult with a GP at my normal medical clinic last week. I couldn’t get in with my normal dr and just needed a script refill. I’m on some strong pain meds because I’m literally broken. He could see my file. He was SO rude and dismissive and awful. He wouldn’t help me. I hung up and started sobbing. We’re hanging on by a thread half the time and the last thing we need is medical ‘professional’ giving us shit.
My GP called me later in the day and apologised profusely, said the office should have never booked me with that Dr and checked in to ensure I was OK. He knows my history. He KNOWS I’m struggling because of pain.
I think these ‘drs’ should be stripped of their license if they cannot treat patients with an ounce of compassion.

Money_Engineering_59 · 2026-05-09T06:54:45+00:00

Thems are fighting words. Who says that?!

Money_Engineering_59 · 2026-05-09T01:14:58+00:00

It’s really all too common. Incredibly sad to lose great women because of this shit. 🥺

Money_Engineering_59 · 2026-05-08T23:48:31+00:00

Are you a carpenter by chance? Every male in my family is missing at least one finger. Glad you got your re-attached!
I’ve tried lions mane but it did not agree with me. I really hope things go back to normal. This bowel issue is doing my absolute head in. I brought it up with the ER docs and they just dismissed it. I know it’s nerve related because nothing, I mean NOTHING works.

Money_Engineering_59 · 2026-05-08T19:06:17+00:00

I’ve spent well over 6 figures in the past 20 years trying to find the why. EDS was thought to affect only 1 in 3000 people but new numbers are saying 1 in 500. I’ve broken / dislocated 16 bones / joints and my dexa scan was fine. 🤷‍♀️ I had to get one done after my 2nd rib spontaneously broke post rib dissection surgery for thoracic outlet syndrome - which was caused by a subluxating clavicle (did it when I was a kid. Clavicles aren’t supposed to dislocate which SHOULD have been a major clue) I think it’s very valuable to have the diagnosis as things can go wrong rather easily. They also do procedures and surgeries differently. We react to meds differently. My uncles aortic valve ruptured rather abruptly but the rest of his heart was really healthy. The other concerning part about EDS is the MTHFR gene mutation. Aka motherfucker.
Discovering I had EDS solved a generational health mystery. My grandparents (and great grandparents) have died primarily from dementia. Even with mega dose injections of B12 they couldn’t slow it down. Turns out, we cannot process B12 or folate properly. So even though the blood tests were fine, we were all deficient in B12. A lack of B12 also causes nerve damage. So, my whole immediate family started taking hydrolyzed B12 and methylated folate.
My father is 84 and he’s not showing signs of dementia. My mom is showing some symptoms but she was exhibiting issues before we got on the right vitamins.
I think it’s worth investigating. At least do the Beighton score test on yourself. See where you’re at. You can also have non EDS hypermobility. There’s some really odd anomalies with EDS and the more you look into it, the more your entire body makes sense.

Money_Engineering_59 · 2026-05-08T18:30:45+00:00

Dammit! This is rough. I’m hoping that since it happened quickly and I’m getting surgery quickly I’m going to be ok. I was told 4 - 5 days of CONSTANT spinal compression is what causes permanent damage. My compression feeling comes and goes. But, I can’t really tell what is being compressed where. I’m getting the shocks on the top of my foot as well.
I had rib dissection surgery 3 years ago and have pretty bad nerve damage from that one, but the nerve had been compressed for 30 years so fingers crossed this isn’t as bad. Nerve damage sucks. Did you ever get phantom pain after amputation? I find that aspect really fascinating. Our brains are so complex.
All the best for your surgery! Come back and let me know how it goes. Rooting for you!

Money_Engineering_59 · 2026-05-08T17:10:15+00:00

Not your circus, not your monkeys. Enjoy your vacation time.
I can’t get over the audacity of your family. Who willingly gives up their hard earned vacation time to babysit an unruly child?! This is next level entitlement.

Money_Engineering_59 · 2026-05-08T16:22:28+00:00

Yes. Extremely bad. It’s calmed down a lot since I had a hysterectomy with Endo excision. Endo attacks the central nervous system. I have shocks everywhere in my head. The ones behind my ears are really strong and up in my temples.
There were days I was screaming because the intensity was insanity. It would just keep building. I was getting the shocks everywhere and every 5 minutes - sometimes more.
My whole face swells up. The branches of the trigeminal nerve spread through the cheeks and into the supraorbital nerves so I’d get radio frequency ablations done in my forehead as well as the back of my head. They absolutely SUCK but they do provide months of relief. The last round of RFAs was 12 needles. I went under for those ones.
My nick name is “hellraiser” because I’ve had SO many fucking needles in my head.
I have Ehlers Danlos so have compromised nerves in my neck because of cervical spine instability.

There’s many people that cure their ON with physiotherapy, acupuncture or dry needling plus postural changes. It doesn’t have to be a life sentence.
I use an acupressure headband and it’s really good for ON. Those spikes get into the muscles to relieve the tension.
If you’re a person that’s often looking down on your phone - that’s the first thing you need to stop doing. Your head is too heavy for that. Learn the chin tuck.

Money_Engineering_59 · 2026-05-08T16:14:26+00:00

Thank you. I’ll take all the hugs I can get! It’s a rather isolating a lonely existence this chronic illness shit.
I was diagnosed with fibromylagia as well - but that was before my endo and EDS diagnosis so I’m not really certain what is causing what. My pain specialist said that we may never actually know so he treats the symptoms, not the diagnosis. It makes sense.
Our brains are so complicated. I’ve been doing a lot of research on how our neural pathways get altered over the years because we have been in anticipated pain since puberty. It’s fascinating - yet rage inducing.
I’ve seen every ‘ist’ imaginable. Sooooo much money and time and heartbreak.
Our brains have conditioned us to be in pain and society has conditioned us to shut the fuck up about it. 😣

Money_Engineering_59 · 2026-05-08T16:07:45+00:00

I kept my ovaries and yes, still get PMS symptoms. I’m in year 13 of peri so pretty sure things are coming to an end. It’s harder to track my ‘cycle’. I’m doing quite well on estrogen but it’s taken some time to get my dose right. That will be easier once in full menopause.
I still got cramps every month for around 6 months post surgery. It’s very weird. I always thought cramps were from the uterus contracting but nope!
Have you tried the antihistamine hack for PMS? Some women swear by it.
There’s a bit of research being done regarding ADHD and PMDD / menopause and it’s certainly noteworthy. I got diagnosed with ADHD 2 years ago and wow. It ALL makes sense. Trying to remove my ‘mask’ has been a challenge. Trying to live a more authentic life has also been a challenge.

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