Ridiculous Back Pain

[Scarlett]

Hi all, So after having my caudal epidural 4 weeks ago, my back has yet again given way. It felt weak for a few days, so I was ultra careful- avoided sitting or bending or going out. But I leant to reach something and got the typical sudden BANG of pain in lower back. All I can do then is race to my bed and lie down for 2 weeks. Very hard to function alone. Day 4 and I still can’t stand up or sit, and anything that requires bending even slightly causes massive pain and like the whole lot is gonna cave in. Epidurals don’t help. If anyone has any ideas of what I can do, please shout! I have zero life and this is happening more and more frequently.

[Sqad]

I don't know, or my likely have forgotten, what medical disorder we are dealing with.
If the pain is as bad as you describe, then my advice to you would be to call 115 as you may need hospitalisation for your pain control.

[THECORBYLOON]

No idea what dialling 115 reaches but you'd be better using 111 which is for medical help when it's not a life-threatening emergency.

[Patsy33]

You need to speak with a doctor urgently. Maybe start by ringing 111 for advice. You can't go on like that. Have you got family to help you?

[Sqad]

111 then.

[Scarlett]

No, I don’t have any family locally, and no friends who can help with stuff like this. I was told to only phone if I developed cauda equina. Sqad, I have EDS And I think my sacroiliac joints are not held in place, so it’s like Jenga with the rest of my spine.

[Sqad]

Of course Scarlett, I do remember now.
This is all about pain control at the moment and my previous advice remains, particularly if you cannot get relief at home.

[Scarlett]

Thanks Sqad- I’m taking Naproxen 250mg x 2 and Solpadol x 2 per day. And laxatives. It’s not really touching the sides but I’m reluctant to take anything stronger. Also to get to hospital they’d have to stretched my bulk down 2 rickety flights. Easier to wait it out here. But I wish I knew what I could do to stop this happening long-term.

[Sqad]

I am sure that you know that EDS affects among other things the SacroIliac joint and that surgery can help to stabilise it. This is way above my pay scale but I am sure that is has been discussed with your medics.

[Scarlett]

I hadn’t been told about this, no. I don’t even know for sure if that is the cause. I’ve always been told to avoid surgery when hypermobile, because often it doesn’t ‘stick’.

[bednobs]

I honestly can't understand people who complain about pain, let it debilitate them so much then refuse to take pain killers. OK so you are taking some but not full doses, not in a particularly sensible pattern and then wonder why it hurts

[Scarlett]

Bednobs, I am taking 250mg Naproxen twice a day and Solpadol (30mg codeine) twice a day as per my doctor’s advice. What’s wrong with that?

[bednobs]

it's no where near a full dose on either drug.
your doctor clearly either does not know how much pain you are in (if not; why not?) or has given you duff advice, or has given you great advice that you choose not to take or finally, obvs knows you much better than me and is being ultra conservative for another reason not disclosed here.
you say "I’m reluctant to take anything stronger." Why?

[Scarlett]

Reluctant as naproxen raises blood pressure and solpadol causes constipation, and right now I can’t even sit on the loo for a wee, let alone anything else.

[MissTerious]

Scarlett, I have the same problem (also caused by EDS/Hypermobility Spectrum disorder - They keep changing the criteria.) I cant take any strong drugs because of tolerance issues so am stuck with paracetamol and now trying a drug called Nefopam which my doc says will take away about 1/3 of the pain. I can't tolerate more than two a day, but they do help a bit. Hot pads are my best option. I am likely to be having decompression surgery later this summer, but have to see a neurologist first. I live in fear of Cauda Equina and spend a lot of time laying on the bed, but I make sure I get some walking in every day even if its around the house. I am dreading the op!

Just to say I can empathise with you. Fortunately I do have a husband who is doing everything these days and I feel sorry for him.
Epidurals and steroid injections don't work on me and opiates and other strong pain killers give me terrible hallucinations and turn me into a zombie. I can't even tolerate over the counter codeine, but Im not allowed to take them anyway because of bowel issues and the fact that I'm on drug thinners.

EDS is an absolutely horrible condition in so many ways.

[MissTerious]

I am going privately for my operation. Luckily I can afford to. But we are not rich. Dipping into savings, but health is the most important thing.

[Scarlett]

MissTerious- gosh, that all sounds very familiar. I do sympathise, it is so horrible, and as you can see, often you get no sympathy from people. Do you have an actual diagnosis for your back problem? I have several prolapsed discs, spinal stenosis, and facet joint arthritis. I’ve also been warned about Cauda equina, as I developed footdrop a couple of years ago, due to the crowding in the base of my spine. It’s so horrible not knowing what damage you might do to yourself if you so much as sit on a chair. I would love to know more about your operation, although I have been advised to not bother with surgery, because the hypermobility often means that whatever is done does not ‘stick’. I also need to have knee replacements and ankle ligament reconstructions but don’t think that these would help much, when the issue is the entire body and not individual parts of it.

[Scarlett]

also, I know what you mean about the drugs; I am asthmatic and have ulcerative colitis, so shouldn’t really take naproxen at all.

Epidurals don’t work with me either – the one I had a few weeks ago has given me a permanent headache because they pierced the dura I presume accidentally. I’m just hoping that I can get an actual diagnosis for my back pain so I know what I should be doing, even exercise wise.

[MissTerious]

Scarlet I have stenosis and scoliosis and arthritis in facet joints, hips, knees, one shoulder and feet. The other shoulder has been replaced with a new one with reversed ball and socket. They have offered to replace the other shoulder and both hips and also knees, and also put rods in my feet, but I have declined. much for someone who is getting on in years! But my back is the worse pain ever and I will go ahead.

I've never got much sympathy because very few realise what EDS is. It's not as rare as they used to think and In the last 5 years things have looked up. I was correctly diagnosed 10 years ago after years of wrong diagnoses. I have a throw away email address if you want to keep in touch.

[MissTerious]

I am told by my specialists that I am not alone in not being able to tolerate strong painkillers. My medical records are red flagged because of it. I just have to live with it and use coping strategies. I rarely complain.

[Scarlett]

I’d like to keep in touch, I don’t know anyone else with EDS so that would be great :)