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

I also think the suggestion of SS is threatening. And the fact you haven't even been referred is poor. I'd make a double appointment with head GP. Or complain to practice manager of how the case has been handled.

What part of your spine / neck was the original CT scan? With some conditions people can develop an instability in cervical spine, eg ehlers danlos and its related to the surrounding tissue. It surrounds horrendous, i would insist on further CT scan/MRI to be reviewed by a neurologist

I think the NICE guidelines suggest for chronic primary pain you could try anti neuropathics (eg amitryptiline) or an srni like duloxetine. Don’t discount taking paracetamol - but you need to take it regularly not wait until the pain gets worse. You will also need to look at treating it holistically - have you seen the LiveWell with Pain website?

Sounds like migraine is a possibility, especially with the neck pain. I was treated for years for neck pain - unsuccessfully - and it's actually a symptom of my chronic migraine.

The neck pain is part of the attack as opposed to the neck pain creating the headache type pain.

Is there migraine in your family? It's often a familial link.

Push for a neuro referral. If you GP doesn't do it, complain.

I had chronic back pain for years, sent for CT and xray told it was muscular, given pain relief, pregablin, an awful concoction of meds for years.

Turned out I had a spinal chord tumour that was found on an mri with contrast.

It is difficult to assist as the actual info you give about the physical problem is limited.

However, I suffer chronic pain that gives me referred pain exactly where you say you get yours. Thrombin debilitating and switches between feeling like I am repeatedly being hit in the base of my skull by a baseball bat and like someone is ramming a red hot poker up the back of my skull.

It is to do with nerve damage I have elsewhere. I also get neuralgia pain throughout my scalp that feels like someone is stabbing thousands of needles into it. It literally makes me cry if my hair moves.

My gp have me gabapentin which is a nerve blocker and honestly it has been a game changer.

I strongly urge you to demand a face to fave appointment so they can see the pain you are in. Insist on an emergency referral.

Did you suffer any trauma in the weeks preceeding the onset of the pain? A fall, car accident etc? Can you trace back to when it first started?

Having now read your updates and some pp excellent recommendations (last post I saw was at 7.02am), can I add that rather than numbing the pain, your ice packs may be temporarily and partially lessening inflammation. I agree with a pp that you should tell your Dr everything that you have told us here. I suggest that you do that by writing him (can be done on the computer) a physical letter, with an email stating the same things, it is important that you tell him of all the personal and lifestyle difficulties this is causing you, not just the medical ones. It can actually be helpful if some other services get involved, because for instance you could be given extra vouchers so that the children can access more free nursery time, and you may be told about other services and even charities that can help you.

Have you thought of applying for any disability allowances OP? When the medics etc start to see just how seriously this is affecting your life, and at such a young age, it might actually help your GP to (sorry for the vulgarity) pull his finger out, and you know, do something! Anyway please do write to your GP (politely of course, but I am sure you would be), and then follow it up with a face to face appointment, with a note in your hand with the bullet points on it, including how much your and your family's personal lives are suffering, as well as the request for an MIR, and referrals to the different consultants.

@StateOfTheUterus

I think the NICE guidelines suggest for chronic primary pain you could try anti neuropathics (eg amitryptiline) or an srni like duloxetine. Don’t discount taking paracetamol - but you need to take it regularly not wait until the pain gets worse. You will also need to look at treating it holistically - have you seen the LiveWell with Pain website?

Sorry, I forgot about the Amytriptiline OP, and it is another one that I am on, in fact I am on so many tablets that I think they cause part of my brain fog...

I had horrific pain in the same place and it was exacerbated, if that was even possible, by making me vomit with the pain.
It didn't even occur to me it could have been medical tbh as it felt more structural if that makes sense. I saw an osteopath - my initial session was supposed to be for 45 minutes but he kept me for 2 1/2 hours until I could slightly look down and to the side without being in agony. I went weekly for about 5 months and by the end of it felt like a new woman. Apparently the vertebrae in my back and neck were all out of alignment or something, so he basically straightened them out.
I hope you find your answer soon, you should not have to live with such pain.

@43percentburnt

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.

Just coming here to recommend a Chinese doctor if you think it’s mechanical. They are wonderful is it’s anything to do with muscles and nerves.

@Severepain789 have you read about Chiari malformation? Your symptoms sound like an exact fit.

[quote GattoFantastico]@Severepain789 have you read about Chiari malformation? Your symptoms sound like an exact fit.[/quote]
Was just going to comment this myself!

I would see an osteopath and try acupuncture.

This was me after I had my daughter. Exactly as you describe worst pain I've ever had was screaming in pain when I had an episode. Doctors ignored me as well. The only thing that helped was seeing a chiropractor! Immediate relief. Had too see them for initially 4 weeks then could reduce it to every other week. Then monthly then every other month. Now can go three months between appointments. They will also give you exercises that will help extend the need to see them as often.

I used to suffer from terrible back pain due to having a slightly twisted spine.
I would say see a physiotherapist as they can suggest certain exercises which may not cure it but make it manageable.
The ice pack sounds like a dreadful idea and I wonder if it is making thing worse by causing muscle pain too. Ice packs aren’t supposed to be used unless there is inflammation (I don’t think!).
Really sorry to hear about this as it sounds dreadful and reminded me of the terrible pain I used to have.

Could you make a single appointment with a private GP who could refer you to a suitable specialist?

Did you know you can book an appointment with a consultant for about 150-200 pounds. They then take a good detailed look at you and can put you back onto the NHS for tests etc. it means you will get properly looked at and it will skip you up the queue for testing. I would suggest you think about that as a serious option. You can self refer

Another yes to Gabapentin - it's been brilliant for my nerve pain

Physio asap and then push for an MRI, in fact the physio cam suggest this to your GP if necessary.

I would certainly go for physio before trying anything else. If the GP thinks it's muscular have they at least referred you to physio, even if the waiting list is months?

My friend had Botox in her neck (given in hospital) for severe neck and shoulder pain for a long time, she had been in absolute agony and this totally fixed it. It was on trial at the time and I’m not recommending Botox, I’m just saying don’t give up.

Just throwing this out there because I read about it in Take A Break magazine, any chance you have a ‘cervical rib’?

All the best anyway and I hope you get assistance and a cure.

I would recommend an osteopath. If it's muscular they will be able to tell you straight away. They will also be able to tell you how many sessions it would take to fix it. Perhaps taking that information back to your GP would help them to give you the help you need?

Chiropractors are better for bone / alignment issues (though osteopath do some of that), & physio is more focused on mobility and stretches from what I understand.

Join benendon health - in six months time they will support your treatment and in the meantime you can speak to a gp. £11 a month!

Definitely continue to persue the medical treatment but I'd also definitely recommend seeing an osteopath, I have chronic pain and quite frankly osteopathy is black magic. It's extremely gentle and precise and feels like practically nothing (no massive bone cracking chiropractic type stuff) but they are so highly trained they can often pinpoint the problem and source of the issue within one session. Physio has always been pointless for me

Hello I had nearly an exact fit with your symptoms.
First you need to rule out chiari as people say as it could be that.
I dont think its migraine but I do think its Occipital neuralgia- the pain is out of this world. I got diagnosed by a neurologist and had a nerve block which has given me 4 months of 90% pain reduction so far.
Gabapentin seems to be the drug of choice for lots of people.
Amatripyline is awful- did nothing for me. Paracetamol does nothing. Naproxen is good but slow release so you have to take for days for it to work but it does work.
Would not go to osteo but would go back to physio and ask for them.to look at deep neck flexor weakness.
Two questions- did you ever have a car crash and is the pain ever one sided?