Left Side Neck Pain

[Trueblue8]

I was diagnosed with ET a few months ago and have the usual fatigue, which I'm managing quite well. Over the last 2 weeks I have had a pain running down the left side of my neck. It's probably just muscular and totally unconnected with my condition but I just wondered if anyone else had similar symptoms? Thanks

[Aime]

Sorry I can’t answer your question as I don’t have ET but any new, persistent symptom is better checked out by your doc. It’s so easy to blame everything on your ET. As you say it may be muscular but best to check. Kindest regards Aime xx😸😸

[Trueblue8 in reply to Aime]

Hi, thanks for your reply. Yes you're right it is easy to think every ache or pain is due to the ET! I will see how it goes and if it doesn't get any better I will definitely get it checked.

[Anag]

Hi Trueblue and welcome to our group.

Please be sure to rule out exactly what this pain is. I have a slipped disc in my neck and because of crossover symptoms (dizziness, neck pain, numbness in my head, face and arms, tingling and swollen hands, etc.), my ET was overlooked for a long time. Even my 3 TIAs were diagnosed as a neck problem and after my insisting for hours for more and more tests at the hospital, I was finally diagnosed.

Now I have found that there is a strange artery running outwards toward my hypo-campus (brain) which puts me at risk for aneurism. Luckily we know it and can keep an eye on it. This also causes some strange throbbing in my head and neck and I also know the difference there.

It is necessary to treat the neck and differentiate the symptoms that are truly coming from your neck and those that are ET! If you don’t know the difference, it can lead to serious problems down the line. Fix up the muscles, etc. then you are free to know your ET better and help yourself optimally.

Hope to have helped. Anag

[Trueblue8 in reply to Anag]

Thanks for your reply, it's much appreciated

[JackLina]

Yes, I do and it can be agony. Down the left back of my neck which runs up to that side of my head. I've had it for years and it increases and decreases in pain intermittently.

I am also under pain management clinic for years. That was prior to diagnosis but now he wants to burn the nerve ending to stop this pain. Not certain I want this due to other information I've found.

It IS exacerbated by things that can make the symptom seem connected to muscle problems. I have found other ET patients however, with the exact same symptoms. On this site previously.

Low inflammatory diet helps but it keeps rearing it's ugly/painful head. ATB P

[Trueblue8 in reply to JackLina]

Thanks for your reply. My pain is in exactly the same place, back left of neck, so perhaps it is caused by the condition. I hope you get yours sorted and can be pain free. Thanks again

[hunter5582]

Neck pain is a pretty broad term that could have many causes. Your sense that it is probably muscular is a good clue. By all means check it out with your doc, but you might consider going to see a skilled massage therapist. I also have chronic neck pain due to the trapezius muscle locking up. I get other muscular pain, particularly in the lower back related to the hip flexors. With age-related spinal deterioration added to the mix - stuff hurts. Pain sucks!

I found a massage therapist who is quite skilled at therapeutic massage. Regular visits keeps the pain at bay with no meds needed. I recently added that practice of Qi Gong forms which is also making a big difference. Traditional Western medicine offers us many wonderful interventions, but does not hold all the answers we need. You might want to consider some other options to some of the issues you are experiencing.

[Trueblue8 in reply to hunter5582]

Thanks very much for your reply, some good advice and much appreciated.

[Peak-Moves]

Hi there, I'm newly diagnosed with ET. I was having headaches and neck pain before diagnosis. I'm a physio, so I thought I had "worked out" it was all stress and muscle tension. But this was very different for me - I didn't normally suffer with headaches and localised muscle pain. After several months of investigation when these didn't go away - kept recurring, they found I had a cerebral venous sinus thrombosis - on the side of my headaches and neck pain.

I don't want to alarm you, but I would definitely get it checked out in case it is more serious and sign of a clot - I had dismissed such serious things as a possibility as I thought I was at low risk and thought I knew how to deal with the muscle tension. They had found the ET as a result of the neurologist asking for Haem referral and JAK 2 tests as I had no obvious risk factors for a CVST. Now with the ET diagnosis I know this was my hidden risk factor.

I hope its just muscle tension but definitely worth asking your specialist team for advice and reassurance. H

[Trueblue8 in reply to Peak-Moves]

Hi, thanks for your reply. I was worried that it was something more than just muscle pain in the neck but the pain seems to have gone away now. I'm back with the haem consultant on 15th July so I will mention it then and see what she says. Good luck with your treatment and thanks for highlighting your symptoms.