Doctors won’t help with my severe and crippling pain

[Severepain789]

Hi everyone. I don’t know if anyone will be able to advise me but I’m hoping so.

Basically since June of last year I’ve been experiencing severe, severe head pains in the very base of my skull and my neck area. The pain is triggered by movement - looking down at my phone in a normal position with my neck bent is excruciating so I now cannot do that. I have to hold my phone directly in front of my face. I also can’t take baths because again, the angle of the bath bends my neck.

This pain is honestly a 9/10 on the pain scale. I have three children - two of my births were without pain relief and child birth was less painful than this. Nobody will take me seriously on that front but I would not lie or exaggerate.
This pain literally leaves me screaming and clutching my head when the episodes strike. The episodes, as I’ve said above are always triggered by movement of my neck. I have to do labour breathing exercises during the spasms/episodes as they are that severe that I nearly pass out. I also vomit from the pain occasionally.

I have some days that are better than others. Usually when my neck and head have been immobilised for some time. But the moment I start moving my head normally again (such as using my phone, turning to look at the kids in the car, or even bathing) the pain flares again and I’m literally crippled.
The pain is like a deep throb in the base of my skull. It completely knocks me off of my feet.

I’ve now contacted my doctors about this 14 times since June 2021. (Currently reading my medical records for confirmation)

In June 2021 I was prescribed an anti inflammatory called naproxen. This did nothing at all. I was still screaming in pain.

In July I was prescribed codeine which didn’t work, more naproxen and then eventually tramadol - none of these worked or took the edge off of the pain.

In august I was sent for a CT scan which found incidental findings but nothing that could explain my head pains. I was again, left on my own and thrown more codeine.

In September, October, November and December my doctors were contacted again several more times and again just prescribed the same medication which I kept insisting didn’t work but it was as though they weren’t really listening to me and just wanted to get me off of the phone. Several different doctors were insisting it was just muscular pain and naproxen - the anti inflammatory - would eventually work. It has not worked. Will never work clearly.
They even sent me some neck exercises to do which I attempted and these have made the pain WORSE to the point I was vomiting and crawling around on the floor.

I contacted the doctors again yesterday and told them I had run out of tramadol (tramadol does little but it can occasionally take the edge off of the worst days)
The doctor told me that she didn’t want to prescribe me anymore opioids and instead wanted me to try naproxen again (are you laughing now, because I am!) at a higher dose. She then enquired as to whether I’d had investigations to find out what was causing the pain. I said no I hadn’t and that I was now at a complete loss as I am totally disabled due to this. I can barely get out of bed to care for my kids.
Her response ? “If you can’t care for your kids properly I can refer you to someone who can help”
So she was happy to potentially refer me to, I assume, social services, but not refer me for investigations over this god awful pain.
I told her that I didn’t need referring anywhere over my kids as my husband now has to work from home to care for them and we’ve had to somehow find the funds to send two of the three to nursery 3 days a week. My parents care for them the other 2 days of the week.

I really thought we’d get somewhere and she’d refer me for investigations or at least to a physiotherapist but she dropped this entirely and just told me she would send more naproxen to the pharmacy, that it was clearly muscular in nature and anti inflammatories would help and ‘could husband go and collect it for you’

That was that. I genuinely don’t know what to do. I’m shaking from pain all day; every day. I can barely move anymore. I don’t leave my house. My husband has to continuously replace frozen ice packs for me as I lay there all day with an ice back on the base of my skull to relieve some of the pain.

We can’t afford for me to go private medically. It just isn’t an option. I’ve now spoken to 8 doctors at my surgery who are doing nothing. There never seems to be any long term goal - all they do is prescribe weak opioids or anti inflammatories even though they don’t KNOW what is causing the pain. I’ve never even had a full MRI or CT on my spine/neck as they won’t refer for one. The doctor I had a few weeks ago kept insisting she didn’t think a CT of my neck would show anything because she thinks it’s just ‘muscular’

Please, has anyone got any advice? I’m so desperate.

Thank you

You’re in the US, corrrct?

Wrong thread

I’m in the UK.

Also to add - I have been to the A&E several times over this pain and again nothing can really be done. I appreciate theyre busy especially with the pandemic. They just give me IV paracetamol (hilarious) and refer me back to my GP. They once performed a CT which didn’t turn much up and a neck and chest X RAY which was unremarkable.

Nothing works anymore. Pain killers do absolutely nothing for me and quite frankly I’m scared to keep taking pain killers anyway. I’m only 27! I have 3 DS’s who are 5, 2 and 1. I have no quality of life left.

do you have a physio at the surgery?

ice packs should be limited to 15 minutes

No idea as I haven’t been offered any further help.

Unfortunately I have no choice but to use ice packs back to back all day every day because the pain is that severe. The best thing I can do for myself is numb the area slightly. It isn’t an option for me to stop using ice packs because it’s the only thing that relieves some of the pain (by numbing me I assume)

I just wish I had a long term goal here but I don’t. It makes it even worse that the doctors know my family have a strong history of arthritis and other painful bone/joint conditions but won’t investigate further. I don’t know what to do and I’m so sad. I’m missing seeing my children grow up

Are you on the pill?
Probably outdated now, but I spent around 2 years as you are, saw a neurologist and still got no real relief.

I moved, changed to a new gp and he convinced me to stop taking the pill.

I was very, very sceptical, but sure enough, the pain subsided.

This sounds awful, OP, but I have no advice other than to tell the doctors what you want eg. Full MRI on spine. If they refuse, you can ask them why. Also for a referral to Neuro consultant or whatever department this could be under. I think this will have to come off your own Google research or info from here. Ask people what the best department for this might be. It is also possible to change GPs and keep trying to hopefully find one who has some experience of something like this.

you can also self refer to physio, or you could try,
but limit the ice packs

You neeed to see a neurologist or a specialist of some type!! Could it be chiari malformation??

But I would absolutely insist on a referral. I would start by making a complaint saying exactly what you’ve said here

Awful, OP I’m so sorry you’ve been left so disabled by this pain.

Surely you should have been referred for an MRI by now? Awful treatment.

Could it be a chiari malformation?

I think in your condition I’d have gone private even using a credit card. But I know that’s probably not the best advice considering how cost of living increases are right now.

I hope you can get answers very soon. Hopefully you will find a way to unlock the magical MRI button very soon.

Have you tried going to an osteopath? If it’s a mechanical problem then they may be able to help. You might have something misaligned and a few sessions with an osteopath could be very beneficial. Unfortunately gps are not really going to investigate beyond what you’ve had done and in my experience it’s now very difficult to get physio appointments.

Shouldn't they have referred you to a neurologist? I thought it would be obvious.
Can you ask them directly for that?

Book double appointment.
Take bullet point list of what you can no longer do.
Insist they document why they aren’t referring you to a neurologist… might focus the mind somewhat.

I'm an A+E Sister and would never normally suggest this for someone with a long term problem but I would say go to A+E if you are struggling this much, it sounds horrendous and I feel very sorry for you.

Your GPs do not sound very interested or proactive. Your GP should have referred you for an MRI and started you on something like Gabapentin.
Have you been referred to an MSK service?

Sounds like a problem within your C Spine, you need a MSK referral with spinal input in case you need some steroid injections for longer term pain relief.

you have had a CT and an X ray and they think it is muscular.
have you tried yoga?

Could you afford at least one visit to a private physio if you can’t self refer? It’s about £45 for an initial hour’s assessment here and then £35 for each half hour follow up. If they can’t help directly they will at least be able to help you articulate what needs to happen to the GP.

Your symptoms sound very much like those of a colleague who with physio and yoga made a complete recovery. 💐

Yoga could make it much worse though….yoga practitioners are not neurologists…

If the credit card MRI isn’t sn option I’d try an osteopath first. Super gentle one. Don’t go without recommendations first.

You need an mri.

Have you seen a physiotherapist?

I had upper back and neck pain, very similar to what you describe . Mine was muscular, computer screen use and tension. I went to a Chinese acupuncturist. Several sessions and hundreds of needles later the pain went. Painkillers didn’t touch it.

Hi OP, I am really sorry to read about your awful pain. I don't think there is much more that your GP can do for you in relation to your medication, except to try you on steroids. Unfortunately steroids can have very severe side effects, that after a while of using them, may have relieved the pain, but also made other aspects of your life so hard, that you still can't leave the house. I can only think of one other type of medicine that can act as a painkiller for some nerve pains, and they are some of the tablets used to help control epileptic fits. I have used them in the past, and they have been quite effective if it is the "correct" sort of pain. If you haven't tried them yet then I suggest you ask your Dr if you can give them a try. I think that it is important at this stage that the medics try everything in their arsenal of painkillers.

Have they also tried you with mild antidepressants, or other tablets to help you relax? I am not for one second suggesting that your pain is in any way not real. But what can happen with chronic and severe pain is that we tense out muscles up when we are in pain, and when we are anticipating the pain, which can often lead onto ever more severe and recurring pain.

I do hope my own prejudice here doesn't stop you from seeking their help, but a lot of people get referred to a pain clinic at the hospital, unfortunately, at the particular pain clinic I was referred to I felt a little like I was in the dock, charged with some crime of perjury or massive exaggeration - so an awful lot of these things depend on the luck of the draw. I presume that the Drs at a good pain clinic have a wider, and more affective range of painkillers, and they hopefully have the power to refer you to specialists in the different areas of potential causes of your pain, whether that be, muscular, orthopedic, inflammatory conditions, etc.

Of course I agree with you that your GP should have arranged for further investigations for you. It seems ridiculous to me that a GP keeps on floundering in the dark, looking for solutions, without thoroughly investigating the actual cause of the pain.

One last thing OP, have you considered going to A&E when your pains are at their worst? A&E can arrange blood tests, scans, referrals all on the same day if they deem your symptoms to be severe enough, and they certainly sound very bad to me. Good luck OP, I really hope that you get treated seriously, and effectively, very soon.

Sorry OP, it took me so long to type my last post that I missed your up-dates!

You need an mri. In the meantime try a chiropractor or osteopath.

@unstitching

Yoga could make it much worse though….yoga practitioners are not neurologists…

If the credit card MRI isn’t sn option I’d try an osteopath first. Super gentle one. Don’t go without recommendations first.

Yes indeed. I should clarify that my friend’s yoga teacher was also a physiotherapist.

I have very very similar. I have an issue work my c spine due to scoliosis, but was referred and checked out for cervicogenic headaches, which sounds like yours is.

Is changing gp surgery an option?

I bought a tempur pillow (£85!!) and I'm at least not waking up in agony, it justice Congress on throughout the day.

I have five that forcing myself out for walks etc helps as it is forcing my head and neck into a better position, I think it was too long sat looking down that triggered it.

If you can't change GP I would try and get an in person appointment so they can see how much pain you're in, and second if they won't refer you asking them to document why not.

Here, for issues like that you have to be seen by physios first so they can rule out something mechanical they can fix, perhaps asking for a referral to physio may get you further. Physio can then ask GP to refer on .

Have a hug, I get how truly debilitating it is and so sorry you are not being heard.