Severe Neck Pain

[Mires]

Does anyone get really bad neck pain, it’s all around the back of neck going up into the back of my head, I can’t take anti inflammatory medication, any information or help would be greatly appreciated 🙏🙏

[ALPSIE]

Get it off and on. Learnt some exercises from a physio that helped with repositioning including basic shoulder rolls to ease the tension. I use heat patches directly on skin on the lower back of my neck and when it's really bad just have to lay down and rest for a bit till it eases off.

[Mires in reply to ALPSIE]

Thank you for your reply x

[nuttynan]

I get this shooting pain well I say shooting pain as I can not really describe it, goes from base of my spine all the way up to the top of my head. You can literally feel it going all the way up your spine to the top of your head. And does it hurt, Makes me cry every time. I litterally have pain every where all the time, but when this happen it takes my breath away. And I also get out of breath a lot.

[Mires in reply to nuttynan]

Thank you for your reply x

[FalconHawk452]

Hi, I use cold/heat via ice pack and heat patches alongside gentle head circles and shoulder rotations. I find that not an instant improvement but that the pain eases after approx 20 mins and seems to last well so long as I don't then keep the head still! Best of luck

[Mires in reply to FalconHawk452]

Thank you for your reply x

[TwinP]

Hi yes had it for many years to then find out that I have osteoarthritis. It always ended up giving me a muzzy head / headache

The only meds that worked was to take 3 parecetomol against recommended dosing but works for me and gentle exercises

I have tried many different pillows over the years and now found one that works, the one that looks like a butterfly and now pain since.

I hope you can find some relief.

[Mires in reply to TwinP]

Thank you for your reply, I do have osteoporosis in my spine but this neck pain is pretty severe probably all related x

[2thebeach]

Sorry to hear you have neck pain. I have similar pain and I see an osteopath monthly which helps. I do daily neck exercises she has given me. I have a Tempura pillow which is soft but supportive and I've found that helps too. If it's really bad I put a heated wheat thing round my neck which takes the edge off it. I take paracetamol too. I hope you get some relief. X

[Mires in reply to 2thebeach]

Thank you, all I can take is paracetamol, may need another trip to the doctor x

[KimiJay]

Chiropractor!

[Judithdalston in reply to KimiJay]

yes I swear by my McTimoney trained chiropractor…very very gentle spinal manipulation every 6-8 weeks thus generally before the pain and / or stiffness gets too bad. Decades ago when first getting problems hot/ cold packs and fitted collar helped, now I use small pillow in car, even in cinema. With fibromyalgia I find taking just a little amitriptyline daily just ‘takes the edge off’ to sleep.

[KimiJay in reply to Judithdalston]

Glad to know you get good results from McT. I went to Herself once to give that system a try when we moved but it left me in the same pain as before and I was really disappointed to have used my birthday money for it, so just went back to what I knew. People do give good reports about McT technique though. I had just got used to being clunked around! - I also stopped amitriptyline six months after diagnosis as I was a zombie almost all the time but it would be good to find other things that work to get some sleep. I am finding quercetin helps at night and I have a Bach Night Rescue Remedy by the bed. Usually 3 squirts in the back of the throat helps me get back to sleep. Tastes lovely too.

[Mires in reply to Judithdalston]

I had a bad experience with a chiropractor he was very strange, but definitely worth a try with a different one x

[Yassytina FMA UK Volunteer]

I do suffer with neck pain and quite often pain up the back of my head, I see you cannot take certain meds ,I use a Cannabi strong hemp cream on my neck as it eases the pain some what , I have brought online (always run any meds /creams by a pharmacist) it actually smells amazing Eucalyptus,Rosemary. Like the other s have said warmth helps too x

[Mires in reply to Yassytina]

Thank you will speak to my pharmacist about trying that x

[Elemis]

I also suffer from neck pain and regular headaches which can last two to three days. The only way i can control the severity is by swimming regularly and stretching. If i dont exercise the pain worsens. Pain killers dont always work for me but i do have a GP prescription.

[E3178]

I use a tens on my neck and it really helps

[Evonne02]

Hi Mires, Everyone I know, including myself, has acute neck pain, which radiates up the back of our heads, as well as each side of the neck. It's a common feature of fibromyalgia, unfortunately. You think it's gone but just try to hold your head up higher ir further on each side, and no, it's just idling there waiting for stress, pain or doing something requiring strength, or continuous movement just starts it off again.

Mine has me sleeping on 4 firm pillows, which have to be Silentnight somehow. My best friend can't sleep in the bed with her husband and has to wear a heated neck thing to sleep on the sofa. I'm continually having bad flare-ups which have me in bed unable to move as I'm paralysed all over my back and just stuck there.

I joined one of the fibromyalgia groups on Facebook, and there's really scary stories on there about what people go through.

You can also join Fibromyalgia UK but I think there's a yearly fee to join up.

Anything is possible with fibromyalgia. Apparently there's just under 30 points on our bodies that are trigger points but I'm stumped at what triggers my neck and especially my back. The other pains I'm used to and believed for 10+ years that they were all due to arthritis....eventhough fibromyalgia is classed as a form of arthritis too.

If you're in the uk then you can also join versus arthritis. That's correctly spent with the u rather than the e. They've got loads of info, little community online groups and challenges, etc.

On YouTube there's a plethora of information on fibromyalgia as well as the different stances that dufferent countries have on fibromyalgia, which are really good. There's exercises which I need to get back into as I've had 2 moves within 3 months and my fibromyalgia just went berserk rendering me hospitalised overnight a few times as well as bed bound and 2 stones heavier. Then being put into Sheltered Housing with Extra Care as I kept falling thinking I could deal with the pain and paralysis 😒

I think diet plays an important part as I really feel it when I've had a flare-up and chucked crap in a carrier bag before getting to bed, which is my safety. Thinking fruit is a good thing is a no as I've had all the acid, etc sitting on my teeth for 4 whole days at least and fir years too. Now I'm prescribed a special toothpaste by my dentist. Forget white teeth because that ain't allowed or happening again 😒 😪😪

When diagnosed I never thought or saw it coming that this would happen to me after about 3 years. The worst is the constant and acute tiredness. Outside of the flare-ups your sleep belongs to something or someone else. And yes, you feel like you're being tortured for something you've no idea you did that was wrong and youre desperate to make amends to make it all go away.

Ask your Gp to refer you to rheumatology as they're the ones who specialise in fibromyalgia. They can request that your Gp gives you certain medications, gels, etc. Think about what you want to achieve or keep stable and discuss it with both of those professionals.

If not successful, then demand you speak to someone at your local Pain Clinic. I hope I've helped you recognise your symptoms. Please try to take charge as for the most part, it's an illness that's too overlooked and Gps don't want to deal with. I wish you all the best 😍

[Mires in reply to Evonne02]

Thank you so much, ☺️ you have given me more information than any doctor, I was being treated by a rheumatologist for years for a type of arthritis I didn’t even have so without finding what was wrong they just discharged me😢 I have so many different things going on I sometimes think I’ve got something more terminal but I guess everyone goes through that, I’m awaiting a 24 hour ecg for palpitations I’ve been on the list months, I’m also awaiting to see maxi facial for swelling on my left side of the face goodness knows when I will get seen x

[Evonne02 in reply to Mires]

I was diagnosed based on what I described to my gp. It then took about another 3 years for the referral to a Rheumatologist. I was poked and prodded all over, but when he touched around my upper back and especially around my neck I kept falling back onto the bench/table. He said yep, you definitely have fibromyalgia. I asked how he knew and he said there's pain and pressure points all over for which I have most 🙄 I also have hypermobility which enables me to stretch, turn, extend etc, so by the time I'm in pain it's at least 6 to 8 months later and I've created further damage. If you can, just write it all down. How it feels, where it is, what you were doing before, if it stopped you doing something, the type of pain, reaction to something, what you ate and drank that day, where you were, how it affects your mood and mental health, affects on family, work, and social life, etc.

If I were you I'd ask for a 2nd opinion from another Rheumatologist as getting no diagnosis isn't helping you adjust to what you should or shouldn't be doing to try and stabilise it for as long as possible.

I do hope you get help soon. All the best 😍