5 years of back pain, normal MRI - feel like I’m going nad

[SinkGirl]

Finally got referred to back pain clinic after 5 years of upper back pain - constant moderate pain along with altered sensation, tingling in limbs etc, and then severe flare ups where I’m in agony, always after I’ve been lifting my twins too much or have twisted strangely or similar.

Physiotherapy and exercises hasn’t helped, chiropractors didn’t help. I do my physio exercises and Pilates every day except when it’s so bad I literally cant move. I’m having a terrible flare up right now as my twins have been off school for summer and they need a lot of lifting - haven’t called the doctors yet as I’m sure they think I’m a faker (I’m already on morphine due to endometriosis and so absolutely hate asking for muscle relaxants 2-3 times a year when it’s unbearable).

Had the MRI in June, and a call today to say everything is completely normal and that it must just be chronic pain since I already have chronic pelvic pain. But it’s just so different to that, what triggers it and the type of pain.

I’m honestly absolutely shocked I don’t have a slipped disc or some other visible issue. But apparently I don’t.

Obviously I don’t want there to be anything majorly wrong, but now I’m realising I’m stuck like this. Doesn’t help that it’s come at a time where I’m in so much pain I can barely move. I’ve just absolutely had enough - summer has been horrendous and I’m just completely at the end of my tether with everything.

Has anyone been in this situation and things have gotten better? I’m already in a mess with the endometriosis and adenomyosis and waiting on a hysterectomy. I don’t need more pain. I’m not even 40, no idea what I’ll be like in 20 years.

I'm so sorry, OP, back pain is so miserable (car accident resulting in whiplash type injury here). Ejatd your clinical team's next move? If there is nothing else they can do, have they referred you to the pain clinic?

*What's

Have you had tests for things like lupus, Addison’s disease, hypothyroidism etc etc (all autoimmune conditions) - all these can cause severe joint and back pain. In fact upper back pain was the first symptom I had and went on to be diagnosed with all these! Ask for a referral to endocrinology.

I think the fact the MRI showed no problems indicates your back pain in muscular, rather than connected to crumbling discs or other spine issues.

OP, how old are your twins? You are probably straining the same muscles every time you lift one of them, so the muscles never have time to fully heal. I don't have children, but am a keen gardener and discovered that if I move large pots that are over a certain weight I can strain my lower back muscles and be in pain for weeks. So, I got rid of the larger pots and accept the limitations of my backmmuscles. Of course you can't get rid of your twins, but can you change things so that the lifting is done by someone else? Are they old enough for you to manage to get them to move into/out of places without you lifting them? I really think that you will massively reduce the problem if you can stop regularly lifting your twins, and consider them to be like heavy weights that are too heavy for you to safely lift.

Just going to throw my hat into the ring. I happened to read an article about ANKYLOSING SPONDYLITIS (an-kee-loosing-spon-dee-ly-tis) and realised my long suffering dd had those symptoms. She took the article to her gp after years of undiagnosed symptoms. Turns out she had it. Nothing came up on the x-ray. Cannot recall what happened to her MRI.
Maybe look those symptoms up? Worth a try?

I was going to mention A.S apparently it doesn't always show up on MRI

@Outfoxedbyrabbits

I'm so sorry, OP, back pain is so miserable (car accident resulting in whiplash type injury here). Ejatd your clinical team's next move? If there is nothing else they can do, have they referred you to the pain clinic?

They’ve discharged me. Pointless referring me back to the pain clinic as I’ve been to several, I don’t think they’re even taking referrals now

Thanks everyone. My twins are 5 shortly but disabled, so lifting isn’t going away any time soon sadly as they’re still reliant on nappies.

Have had all the blood tests on earth - all fine.

I do know of AS as a relative has it, I will certainly mention it to my GP when I next see them.

It probably is muscular I guess - it started when I was pumping for the twins and had all that sodding relaxin. Bloody pregnancy!

Just feeling a bit fed up - need to pick myself up and figure something out

Endometriosis can form along your nerves...and can in fact show up absolutely anywhere in your body, not just your pelvis. I suspect it's the cause of my sciatica. I would doubt it would show on an mri for the same reason as it's only diagnoseable via surgery.

i'm so sorry OP

How frustrating for you OP when you say the MRI was on your back, did they scan the whole spine? Did they also scan your cervical spine?

I was diagnosed with chronic pain due to myofascial pain by a rheumatologist and given amytriptiline which helped immensely. I think its harder to get a rheumatology referral now but as a carer I would push for this.
As part of the process they ruled out alot of the conditions named above so if you haven't had this ask for a rheumatology referral. The pain of your endo may have sensitised the rest of your body to pain. Its an inflammatory condition as well. I've had both as well.

@Roselilly36

How frustrating for you OP when you say the MRI was on your back, did they scan the whole spine? Did they also scan your cervical spine?

Cervical and thoracic spine I think.

This was the rheumatologist clinic and the GP had already done all the blood tests they wanted to do when they did the referral.

Unfortunately amitriptyline, gabapentin and pregabalin all made me so fatigued I couldn’t move - I used to take them anyway before I had the boys, but I wouldn’t be able to manage now that I can’t just spend the day in bed if needed.

It just doesn’t feel like nerve pain to me, but maybe that’s silly as maybe you can’t really tell the difference. It feels like an injury, whereas with my pelvic pain it’s widespread and feels different IYSWIM. But maybe it’s different with your back. I still can’t get my head round how the skin across my whole upper back feels so weird to the touch and I lose feeling in my hands when I lie flat on my back but there’s no nerves being impinged or anything. It’s so weird.

Maybe I just need to go back to physiotherapy and start from scratch with that. I’ll speak to the GP again but fair enough if they just think I’m crazy at this point. I went through it for years before I got my endometriosis diagnosis so part of me wonders if something is being missed, but probably not.

I had considered endo being the problem but it’s not at all cyclical so I doubt it.

When I was searching for information about my MRI I came across chirogeek.com/ which is the site of a guy who is an expert on reading MRIs and he has a service where he will take a look at your MRI for you, so you could check that out and see if you think it's worth getting the MRI looked at.

I wondered if there may have been some narrowing or impingement in your neck causing your symptoms. I hope you get the answers you need soon OP. I know it isn’t easy having to advocate for yourself, when you are clearly in pain & busy being mum. Wishing you all the best for the future.

Thanks @DogFoodPie - I’ll have a look at that.

@Roselilly36 I wondered that too but she said there’s no bulging, no impingement on the nerves or problems with the nerve roots so I guess it is just all normal. I’ll see what happens when I get the report.

When I had the scan it was the first time I’d laid flat for ages because it hurts, I had terrible pain in both hands and then numbness throughout the scan - it’s really hard to understand that there isn’t something physically wrong causing that, I just can’t get my head round it.

When they did the neurological exam it said “upper limb myotomes bilaterally showed weakness of C7/8 4-/5” but from what I can gather that’s only slight weakness - then it mentions the dull sensation to touch on my back down to T6 and pain touching my spine from c2 to t6. Otherwise everything was normal.

I think I’d just hoped they’d be able to point to a problem so I knew what was going on - obviously it’s good that my spine isn’t totally screwed up, but it feels like it is anyway.

Ugh, this month has been really crap. Hopefully now the boys are back at school I can rest a bit more. I know I should call the GP to ask for more bloody diazepam (it literally doesn’t have any positive effect on me, I’m really tolerant to it because of the morphine I take so it does very little but helps just enough that I can move again). I just hate asking so much.

What about hypermobilty?

I've been through the hospital for years. Done the pain clinic got to the point they were just going to inject my back every few months. Turns out I have hypermobilty took fucking years to get a diagnosis. If you are in the south east I can recommend an excellent sports therapy clinic that has a great team and are very knowledgeable about hypermobilty and AS. They also take NHS referrals.

OP, at 5 years old they are getting quite heavy I expect. You said it's been worse during the summer hols so it does sound like lifting them constantly through the day is a big factor. Do you have a partner who can share the load, literally? If not, and if they cannot walk unassisted, surely the issue will only get worse, so you would qualify for some assistance as their sole carer? Maybe you could request a carer's assessment from social services?

I really sympathise. My back is playing up since I mowed the lawn yesterday, as I had to carry the mower up some steep steps. I now realise that's another task I will have to leave for DH to do. I can barely stand upright when I get up, for about half an hour I'm doubled over like an old woman. Mine is all down to weak muscles but is very painful, despite just being muscle pain. Good luck OP, seek help and try to minimise on the lifting, is all I can suggest.

Oh SinkGirl, it does sound as if you’re having a wretched time of it, I’m sorry.

The MRI not showing anything isn’t the same as there not being anything physical going on. It’s very possible that you’ve messed with your back muscles & it’s having a knock-on effect on your shoulders & thus down your arms.

It sounds as if the hospital you were under were very thorough when it came to evaluating your scan results & reporting on them. It does sound as if they could perhaps have done a better job at communicating to you what they recommend now, but hopefully they’ll put that in the letter to your GP. If they’ve not mentioned it, your plan to ask for physio is excellent. Asking about alternative medications would also be sensible - tramadol can work for neuropathic pain, so a switch to that from morphine might be worth it, for example. There are some other antidepressants & antiseizure medications that you could try too. As it seems you’re having ongoing issues with muscle spasm, I wonder if baclofen or tizanadine would be suitable, especially as you’ve developed a tolerance to diazepam.

When it comes to lifting your twins, have you hoists at home? If not, have they a social worker to help you apply for a Disabled Facilities Grant to get them installed (or possibly buy a mobile one if you’re in a rented property, not sure if you could use a DFG for that, but worth investigating)? Can you look at when it is you’re having to lift them & see if there’s any way to reduce it? I realise it’s not that simple with disabled children, but it’s really important you look after yourself as well as them

I hope things improve soon.

?sacroilliac

Have you tried different Oestopath's? I went to three who were hopeless but the one I have now is an absolute godsend

I was convinced I had a slipped disc but after 5 treatments I had a lot of relief but I had to stop the activity that was jarring it for 12 weeks until it healed and then do regular Pilates if I keep this up I only need top up sessions every 12 weeks

AS can be genetic you should look into it yourself- your GP is no expert!

I saw an NHS physio for my lower back pain and he said I was "expecting too much".

A couple of years later, a friend said he had been to an amazing private physio. She is an injury specialist. I went to her and she was able to fix my back for me (& was very angry with what the NHS one had told me). She fixed it by specific manipulations to put things back in the right place, rather than giving me exercises.

So just suggesting if you haven't tried an injury specialist physio, that might be worth a session to see if they can help. Even if they could just rule out muscular issues?

This is so similar to my sittuation we have a lot in common.

I have debilating back pain which causes chronic fatigue. Originally had inflammation in facet joints from a rotten pregnancy with pelvic pain. I had lots of treatments for that and pain is still here. They say that I have hypersensitivity as a result of hypermobility syndrome and when I move and stretch my pain receptors are telling my body im in pain. It's like my body has lost perspective of normal movement. I'm having an infusion to coat my nerve receptors and try to get everything to switch off.

Could something like this be going on for you?

poor you, sounds awful.
agree with pp about lupus, as.
possibly deferred pain from your other issues.

with regards to your children, ask for help for lifting equipment.
you cannot continue lifting them as they get heavier. even a strong and healthy person would struggle with that amount of lifting.

possibly there is a charity helping those with your dc disability.

Thank you so much everyone for your suggestions and your kindness, it means a lot.

My boys can walk, it’s just nappy changes that are the issue. Ironically because of my back pain I can’t change them on the floor or a sofa or standing up so I’m still lifting them to a changing table but if we can’t get them potty trained this year with the help of their specialist school and therapists then we will have to find an alternative solution. They’re still about 18kg so still within what social care consider acceptable lifting limits. DH does most of the lifting when he’s here so when they are in school it’s much more manageable - holidays are tough though and I’ve needed a course of diazepam after each school holidays so far, and a couple of times when they were off due to Covid. So I knew the summer would be bad. I’m going to see if I can find a small set of steps that can maybe fold up, like a little stepladder, as having a set of steps accessible to them is a bad idea but it would help for changes. If they are willing to cooperate, that is!

I’ve had another look at AS and hypermobility to remind myself - the symptoms don’t quite fit and there’s been I inflammation etc in my blood tests, normal sed rate which basically rules out a lot of conditions.

There is a private sports injury physio place near me so I think I’ll try them first - they do therapeutic massage etc which might help. My muscles do feel extremely solid and painful to touch so it seems like they’re spasming.