What’s going on? Miserable. Can I be mended??

[messybun101]

I’m in a lot of pain as I write this so I’m sorry if I start to ramble

I just turned 27. Diagnosed with joint hypermobility in 2015. I’ve always been very bendy. My spine especially. I could almost fold myself in half backwards.

December 22nd I was wrapping presents with my legs crossed. Leaned forward with my hands in front and heard pop pop pop... going down my back. Starting from my upper spine between my shoulder blades, then where a bra clips, under my bottom rib on the left and the right side too. I couldn’t move my upper body at all it was seized and my DP had to try and stand me up and walk me to bed. I spent 7 weeks not seeing my downstairs, just the bathroom and bedroom.
So, I was given the fullest prescription imaginable. Bottles of morphine, oxycodone high mg, already on the highest cocodomal and gabapentin for my scapula so they chucked in some pregabalin and diazepam too. I’d wake up, roll around the bed until painkillers kicked in, go to the loo then back to sleep. No quality of life at all. Miserable.

A telephone consultation with the physio proved pointless. “Just walk 15 minutes a day and stretch your arms like this, you’ll be fine”
Very good - it’s the 1st of May and I’m still in pain but things are a bit different now, I’m 16 weeks pregnant.
I’ve reduced my pain relief to barely anything over the last couple of months for the baby’s sake but I cannot reduce any more without some other kind of management. (Meds changed cocodomal was x8 now x6, gabapentin was x9 now x6, diazepam was 40mg now 6mg and oxycodone was 100mg now 15mg morn/eve) everything else was stopped when I found out we are pregnant. I can’t take ibuprofen for inflammation so it’s a hot water bottle 24/7

The NHS physio are totally reluctant to see me. I’m wasn’t pregnant at the time of the telephone call and I think it’s muscular so I thought they could help?

I’m embarrassed. I’m only 27 years old. I’d rattle if shaken. I’ve lost my strength. I have anxiety going out myself now it’s been so long. I can’t keep up with housework. I feel like I’m failing. Fortnight hair washes... I have to wash my hair one day and dry it the next as it’s too painful. I worry I won’t be able to bond with my baby.

I’m now wondering if I should seek help from a private physiotherapist or chiropractor?
I’ll only go ahead if it’s safe for the baby obviously but I’m dreading him arriving in October and I’m being totally unable to enjoy motherhood for the first time. It’s so upsetting and I’m worried. If I have to wait until he’s here to be treated then I will, but please tell me there is hope and other things that can be tried? I’m not a lost cause?

Oh crikey that sounds horrendous.

Were you tested and scanned to see what actually went on in your spine?

I would say yes to see osteopath as they might be able to provide relief but it will likely need to be repeat visits through your whole pregnancy. Have the doctors given any indication how your back will respond to pregnancy? Is it something that will respond to exercise?

I’ve always been very bendy. My spine especially. I could almost fold myself in half backwards.

I haven't been able to go any further than a '10 o'clock' bend since the incident in December (could weirdly easily do 7 o'clock before)
My posture has always been perfect. Very straight back. People have commented they always know it's me by my posture if walking behind. It's something I've always been complimented on too which I really liked. I haven't heard it in a long time. It feels like I've lost height

@doadeer thank you for replying!
No, scans can be considered when the baby is here. They will be happy to have a look in October though...

My midwife had a little feel last Friday. I was only feeling about 4/10 pain and the muscles didn't feel too inflamed at the time, but she thought it could be muscle spasms. I've never known spasms to make anyone bedded and unable to take care of day-to-day living 5 months later and in this much pain though. Maybe in wrong? This just seems a bit more serious?

If you can afford it I'd definitely seek chiropractic help. Some offer free consultations and might at least tell you if they can help

Were you pregnant when the incident first happened? It sounds awful.

I've got horrendous back pain as a result of pregnancy I'm also hypermobile but different situation to you.

Definitely think you need a chiropractor/osteopath to feel what's going on!

@polkadotpjs I wasn't sure chiropractor or physiotherapist.

We will find the money from somewhere if it will help. I thought about insurance that covers this too. From what I understood, I think I can take out an insurance plan, then after a month or so being on the insurance books and making policy payments I could seek a consultation. I think...

@doadeer I had a D&C November 1st after a blighted ovum at 11&4 then LMP 27th December. I'd say no but midwifes go by period dates, so...

Oh I'm so sorry you have back pain too. Do you have problems with your hypermobility? My shoulder has caused problems for years now. It's how I found out I had it. I honestly thought everyone could bend the same...
I'm worried about the back pain that comes with pregnancy just knocking me over the edge. There must be some chiropractor/osteopath pregnancy specialists surely. They won't be going near my bump?

Mine only flared in pregnancy with severe pelvis girdle pain, before that I just did bendy party tricks and was "good" at yoga. Many women see osteopaths all through pregnancy, I'd say get help now before the baby gets big and increases pressure they might recommend a back support and they will also recommend exercises if they think that would help.

Definitely try and see someone privately about this before you get heavily pregnant, and then carrying and lifting a baby, phone a few private clinics and see what they suggest

I think you need to keep pushing to be seen by a physio or pay to go private, it sounds like there hasn't been any real investigation into what has actually happened to your spine. Even without scans, I would have thought à physio would be to get an idea of what is happening by looking at your mobility/posture

I’m so sorry, that sounds awful. You’re probably aware that pregnancy causes your ligaments to become even more flexible (and for a little while afterwards), so I would try to seek some help now before the pregnancy affects you even more. I’m also hypermobile and could barely walk during the last few weeks of my pregnancies because my pelvis just wouldn’t work properly. And I injured my hip joint just after giving birth when I turned suddenly and my leg didn’t come with me - sounds so trivial but the pain is still there 13 years later (but improved) but my doctor and NHS physio didn’t take me seriously as after the incident, it left me with a ‘normal’ range of movement in that hip, not the ‘normal for me’ massive range so they were like, “yeah, seems fine”.

Thank you all so much

I am seeing a midwife in VIP team (they deal with women on meds during pregnancy) so I think I'll ask her. She does seem to be a lot kore on the ball than my gp. The GP always seems to be wobbly and a bit uncertain in making decisions.

I didn't know many see osteopaths during pregnancy. This gives me hope. Especially that I have a chance to not be crippled and in bed as the baby grows. I needed this. Just someone to say it's not giving up time yet.

Thank you, this all helps me so much xx

Oh @BloodiedButUnbowed I'm so sorry that sounds absolutely awful
Thank you for sharing. I'll keep your story in mind my next talk with them and it should help me push for better. I don't want to still be suffering in 11 years...