Ongoing neck pain

[RLJ_]

I’m just completely at a loss.... I have had ongoing neck /base of skull pain for about 8 years. Getting worse each day. Neuro have done mri’s and nerve conduction studies with no answer and I went to a chiropractor who xrayed me and said it was military neck. I take pain killers with no effect. Just wondering if anyone could please advise me on what else I could do? I’ve even bought the tens machine which doesn’t work

[springcross]

Hi RLJ. I'm sorry to hear that, it must be so awful. Did the chiropractor not give you any treatment?

[RLJ_ in reply to springcross]

Hi, he tried to readjust but he wanted £50 3 times a week for 12 weeks which I thought was very steep and he said it would take a month to get any benefits which seemed ridiculous

[springcross in reply to RLJ_]

That sounds a bit silly. He can't possible predict how long it will take as we're all different, it sounds like he hasn't got much work on! Try and get yourself a good osteopath (even a cranial osteopath ) or a hands-on physiotherapist (check them out first to see if they have any good reviews), ask around to see if anyone knows anyone who has been treated by them. It does seem like it may take a while as you have had it a long time but I don't believe three times a week is necessary - the body takes and needs a while to adjust to each treatment anyway. Also, I don't think going without a pillow is wise especially as it sounds as though you usually use one, your neck must be wondering what's going on. Good luck with it, I know how you feel and it's not nice. Let us know how you get on. xx

[springcross in reply to RLJ_]

I forgot to ask RLJ, what's military neck?

[RLJ_ in reply to springcross]

The c spine so the top of your spine is straight instead of curved

[Hidden]

Does anything in particular make the base of skull pain worse? Coughing or bending for example?

[RLJ_ in reply to Hidden]

It’s worse when I wake up in the morning but I’ve tried sleeping with no pillow, more pillows, different pillows nothing helps. When I press at either side of my base of skull it’s like a pressure build up feeling and my neck feels really tense

[Hidden in reply to RLJ_]

I just wanted to check: I have a fairly common but relatively poorly understood congenital defect at the base of the skull that effects an estimated 1 in a 1000 people. Of those it effects, only a very tiny minority get symptoms or require treatment, but the universal issue encountered is back of head headache/base of skull pain, made worse by any kind of straining movement like laughing, coughing, or bending. Getting it diagnosed (even when it’s clearly visible on mri) can be a nightmare, and the only word to describe the effects is hideous, so that you’re not experiencing that is good, but obviously not helpful to you in trying to determine what’s wrong and what might help.

Have you considered trying to get physio via the NHS? I realise there’d be a long wait, particularly right now, but it might prove beneficial and wouldn’t cost you £150 a week for 12 weeks. What painkillers have you tried? Have they considered trying anything for neuropathic pain to see if the issue could still be nerve based? Conduction studies only tell you if nerves are firing properly but nerve pain doesn’t just stem from that. I have nerve damage in the back of my head as a result of surgery that mostly causes pain at the top of my neck, which leads to stiffness in turn through a lack of movement to minimise the pain - it’s a vicious circle. Could your sleeping position be part of it? I know the circumstances are different but I can only have one pillow and side sleep otherwise I really suffer.

[RLJ_ in reply to Hidden]

I think I’m going to have to ask to be referred on the nhs. It sounds like you’ve been through a lot is your pain under control now?

[Hidden in reply to RLJ_]

Apologies in advance as you probably don’t want to know half of this...I am probably 90% better overall having had 2 bouts of intracranial surgery: at the point of my first op, not only was I in agony with my head and neck (and a lot of my back, which we now know was mostly RD), I’d pretty much lost my mobility due to the defect restricting the flow of csf through my spine. From symptom onset, within 18 months I needed two walking sticks but couldn’t get far at all even with those. The most recent op was 2014 which was the one that left me with the cranial nerve damage, but I also suffer with a wide range of different headaches, including some defect related pain at the back of my head still, particularly with lots of laughing or if I get a cough. Not nice, but also not constant in the way it used to be.

I’ve been in pain every day for the last 11 years, now, the only thing that varies is the source and the intensity. As a result, my personal experience of long term, unresponsive, chronic pain has been that painkillers are more often than not *not* the answer (because many only mask the pain slightly or just don’t work for intractable pain at all, or if they do work you can’t function properly on them), and that the best ‘solution’ is actually mindfulness for pain management. It doesn’t remove the pain, but it enables me to change my relationship with it, practice compassion and care towards myself with regards to my pain (rather than being wilful and stubborn about doing things or not pacing yourself because it’s not fair and we ‘should’ be able to do things the same as everyone else), and change my overall experience of living with pain. You do have to try to learn to live with it rather than keep fighting against it, and in doing so it reduces the emotional and mental suffering, even if it can’t reduce the physical intensity. In my case, it has definitely enabled me to continue living a pretty full, if somewhat more measured, life, and I should point out I am the least new-age, airy-fairy bloke you’re ever likely to meet. I don’t put a lot of stock in alternative remedies, I don’t get gong baths, or spirit animals, but mindfulness is an increasingly proven element for mental health and well-being and actually regularly employed by the NHS in the treatment of certain mental health problems. I finally gave up on medical intervention after two failed nerve blocks in my head and neck (actually worked brilliantly, but only lasted 5 weeks) and a failed course of Botox injections (next step up from a nerve block, didn’t work particularly well, but lasted about 4 months), both from an NHS pain management service, and having been through pretty much every type of painkiller you can think of. The only thing that actually ‘worked’ was morphine, but I‘m a single dad to a kid with complex needs that spends a lot of time in hospital, and I just couldn’t function as I needed to taking that. So these days I accept my pain (the majority of the time!), use mindfulness to keep me in the moment and manage my relationship with my body, pace myself as required depending on my pain levels on any given day, and be grateful for the fact that whilst I may be in pain, I can at least walk - and even run - unaided again.

Thinking about it, as well as physio, after 8 years of struggling I’d potentially talk to your GP about the possibility of a pain management referral. They’re usually the only service that can provide nerve blocks, and if they work for you, they usually work brilliantly. I was absolutely gutted when mine wore off so quickly because it really did work wonders for my neck and shoulders. Although called nerve blocks, the name is really misleading; they’re usually a combination of local anaesthetic that blocks the pain receptors, and anti-inflammatory (normally a steroid) to decrease localised swelling and relieve pain and stiffness that way. It’s not actually to do with nerves or nerve damage. When you’re in regular pain, you unconsciously hold yourself differently or change your posture to try and compensate, so one of the benefits of a nerve block is that any referred, postural pain also improves. They mainly stuck the back of my head, but the effect on my neck, shoulders and upper back was probably even more spectacular. It might be worth looking into?

[RLJ_ in reply to Hidden]

Oh no that’s awful I’m sorry you have been through all of that!! Yes nerve blocks are my next thing I will try

[Pognose123]

No idea if this is useful info but before I was diagnosed I used to complain of a pain at nape of my neck. That was part of a list of things that hurt. At that point they tested me for Vitamin D and I did indeed have a deficiency. I’m trying to remember if I still had that neck pain when they investigated RA much later (at my insisting as I was in a right state). I certainly don’t have that pain anymore a year after diagnosis.

[RLJ_ in reply to Pognose123]

I will ask them to check my vit D thank you

[dippyd09]

Hello, I have had severe neck pain due to RA on and off for quite a few years. I have found that a heat pad eases some of the pain and sometimes having it on a few times in succession. I also now sleep with a fairly firm pillow but also a v pillow on top. I sleep fairly comfortably with this but when I wake up I take the v pillow off and sleep with only the flat pillow. I am afraid I haven’t found anything which takes all my pain away sadly but this makes it bearable. I have been seen by a neurosurgeon (only because I was to have a jaw replacement and the surgeon wanted to make sure my neck was stable), two of my vertebrae have now fused but I am still in pain and think that another couple are joining! I hope this perhaps helps in a small way.

[RLJ_ in reply to dippyd09]

Thank you hope you’re ok

[Angels54]

Just wanted to ask what drug you on as since starting on a drug I started with neck pain , it radiates from the left side of head and goes quite stiff and ache, I have now bought a pain pain which I use in my shoulder, this is similar to tens machine and as helped some of my pain it stimulates nerve ends . you can check it on Amazon, just read about it , another thing is ice pack and then heated neck pad after , just try different things .

Good luck .

[RLJ_ in reply to Angels54]

Thank you

[Tiggytiger88]

I have neck pain for about 10 years now due to Having RA for over 30years.

I am now being treated for RA with Tocilizumab drug and it has really helped my neck pain. Far fewer headaches and discomfort. Have you asked GP for a referral to a rheumatologist? My Rheumatologt has given me steroid injections and nerve blocks in the past but these only last 3months. Neck pain is in my opinion one of the most debilitating pains as it effects all of the head.

[RLJ_ in reply to Tiggytiger88]

This is my next step thank you

[285641]

Hi there sorry to read of your troubles. I also have terrible neck and shoulder pain .the only thing that helps me is the heat pad as someone mentioned, but I also sleep with a travel pillow which helps , some mornings I'm even pain free, I've found if my neck isn't supported overnight it's excruciating the next morning and broken sleep also with the pain waking me. My Rheumy nurse advised rolling a towel to wrap round the neck but I find the travel neck pillow lighter, hope you find some relief it's so debilitating.