As per username, my back is in bits
BackInBits · 22/09/2021 11:34
Hello lovely people of the pain board. I'm 31 and I had my first baby 6 months ago. I have a diagnosis of type 3 Ehlers Danlos Syndrome from back when it was called type 3. (Confirmed as hypermobile type in recent years.) I also have scoliosis diagnosed in childhood.
I had bad pelvic girdle pain in pregnancy. It did improve, but as my lovely son grows my back is struggling more and more.
I'm semi-bed bound at this point, from a function perspective more than anything. The pain is reasonably controlled as long as I don't move at all, but that's not practical or feasible and I want to do more with my child. I can care for him well in bed, but the other day I took him to a mirror in the hall for amusement and I was really limited until the next day. I can walk with the buggy for short periods as long as someone else puts my son in the buggy and gets him out.
I see a physio, but last time I saw him I ended up in a spasm worse than labour.
I have an MRI next week and I'm due to see a private pain specialist the week after next. I have a medical background and I'm relatively certain the sacroiliac joint is involved, but not sure how much of the issue it's causing.
I'm breastfeeding and relatively limited in what I can take for pain by this and a long history of gastritis/GORD.
I take occasional cocodamol (I know I'm not a rapid metaboliser due to previous genetic testing as part of a research study I volunteered in as a student, and only take at night after baby has his last feed).
I researched mindfulness for pain, but didn't find it much use. I think I've always approached pain with curiosity anyway because I try to work out what (anatomically) is hurting. It also recommended distracting myself with a game on my phone if the pain was 8 or above. I'd consider late labour to be an 8, so an 8 really is beyond the point of looking at my phone.
Emotionally, I'm coping well with motherhood but not with the pain. If I felt my body was up to it, I'd be trying to conceive again (with IVF like our last pregnancy) now.
Not even sure what I'm looking for. Maybe just venting? Any thoughts or experiences would be appreciated.
IvyM · 22/09/2021 11:49
Hello my fellow chronic back pain sufferer! I've had back pain all my life due to having my back broken in 3 places at 11 years of age. Have 3 lumbar disk herniations and pudendal neuralgia, and am now 8 months pregnant. But after spending my twenties bed bound and on tramadol I've discovered that the stretching I got from swimming changes my posture and the sciatic nerve and pudendal nerve get decompressed. If I stop swimming like I had to in lockdown the pain returns and I'm back to spending my days either high from tramadol or wanting to kill myself because of the pain (it's that bad). When lockdown was lifted after 3 months of swimming am back to being pain free. I think swimming and being underweight have helped me the most. But I think when you swim you have to basically do either crawl or backstroke as brass will hyper extend your lumbar area the wrong way. I know this might not be helpful but wanted to share as it's the only thing that worked for me and I can completely relate to what you're going through.
BackInBits · 22/09/2021 16:12
@IvyM I must give this a try again when my baby starts to tolerate the company of anyone who is not me! I wouldn't manage bringing him, but could imagine it helping.
It meant to say in my OP that swimming worked for me before, but completely forgot to!
doadeer · 23/09/2021 16:02
I'm so sorry this sounds dreadful. Your story is so similar to mine we are even same age.
I thought it was my SI joint but it was actually inflammation in the facet joints caused by pelvic pain pressure, I too am hypermobile.
Ive had a rotten journey. Hope yours is better and they can see what it is from the MRI.
Feel free to message me if you want to talk options, I've done loads of the same as you!
BackInBits · 20/11/2021 01:05
Quick update. @doadeer just saw your reply now!
Following investigations, we now know I have a good few things going on.
Bulging disc in contact with L5 nerve root. Cam deformity of both hips. Labral tear in right hip (pain since I was 11). Modic type 1 changes on L4/5. Tenderness over facet joint.
In a way, I'm pleased to have some understanding. In another, I'm overwhelmed by the number of things wrong. I'll admit that part of me expected to be told the issue was all my weight (part of it is) and asked if I'm coping well with motherhood (I am, but that's the kind of thing we're asked sometimes, sometimes very reasonably as long as it's not used to explain away our pain). I've had some very good medical care.
So far, gabapentin has been added (pain going down my leg improved. Questionable benefit otherwise) and I'm having a racz procedure next week (as long as local Covid numbers don't spiral in the meantime).
In addition, also just found out I have h pylori and I'm on an eradication regimen for that.
I've neglected my health for so long. In trying to get healthy for my son, I seem to have unearthed a bit of a shitstorm.
nomoneytreehere · 25/11/2021 19:38
Very interested in racz procedure. My physio recommended it but consultant poo pooed it. I hope it works out for you.
I have chronic pain with degenerative disc disease so feel for you. Pilates helps me more than anything. And keeping my weight down (currently unsuccessful). I don't take any drugs any more if that gives you hope.
I gave up breastfeeding as the pain was so bad. I think it can be sensible (and I'm very pro - I fed one of my children for 2 years) as breastfeeding prolongs loose ligaments.
Do they want to do a microdiscectomy? I had a very successful one but reherniated several years later. My next stop is a fusion but I'm putting that off for as long as possible.
BackInBits · 25/11/2021 20:06
Hello @nomoneytreehere. I had the racz today and he did a few facet joint injections too while he had me nicely sedated. He definitely located the right spot, because I feel amazingly well now. I strode out of the hospital. This will likely wear off once the local anaesthetic quits and I'll have to wait for the steroid to do its thing, but so far so good.
I'll always be lax with the whole EDS thing and I'm definitely not ready to stop breastfeeding yet, but we'll see how this goes now.
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