Worsening head and neck pain.

[imzi]

I have been having headaches which I have put down to the warm weather but this week my neck has been getting progressively sore and stiff and I’m in a fair amount of pain.

Anyone ever experienced this with lupus? I’m a bit worried

Thank you.

I.x

[_jenc_]

Hi Imzi,

Firstly, I am so sorry you're suffering with head/neck pain as there is no pain quite like head pain in my humble opinion. Essentially it's because of my headaches that I got to the bottom of my arthritis etc. and found out it was all Lupus related! I started experiencing terrible electric type pain at the back of my head to the crown in 2015 with significant neck pain and stiffness. I was taken into hospital and after some tests, a neurologist diagnosed me with Occipital Neuralgia. I then started having chronic migraines too and life became unbearable until my mum persuaded me to go get my rash checked on my face and some blood tests were done and viola... We now know after recent mri scanning from my neurologist (not done initially) that I have lesions on my cervical spinal cord and brain... however please don't be alarmed! I'm sure this is not the case for you. What I did find out though was that regardless of whether or not I had CNS Lupus, the sodding condition can cause terrible neck pain (both from arthritis and also just stiffness of muscles etc) which contributes to horrible headaches. I'm just sorry you are going through it as it's just awful! *hugs* I have found biofreeze indispensable for my neck as it soothes the pain and stiffness and "migra-caps" (google) which you put in the freezer also helps with the head pain for a bit. I have several which sit in my freezer on rotation for when I'm sore which is often. I honestly recommend them if you can afford it because they are the only relief I've found so far. Take care and sending you best wishes xx

[imzi in reply to _jenc_]

Thank your for taking the time to reply. I’m sorry to hear of all you had to go through, my pain isn’t electric is more stiffness.

Oh my goodness that’s scary I hope your ok now?

I went for a back neck and shoulder massage and she said I had lots of knots in my neck, I feel so much worse after the massage i feel like a very old person 😢

Thank you so much I will have a look online xx

[YYC-Girl]

Check your ammonia levels (at a hospital lab) when symptoms are at there worse. Mine were over double the reference range despite not having liver disease. After one week of treatment (lactulose 30 ml/3x/day) and Rifaximin (for cerebral encephalopathy causes by the hyperammonemia 600g/2x/day) the stiffness and pain in my neck went away.

[imzi in reply to YYC-Girl]

Oh I have never thought of this? I’m going to give the pain until Monday and if it hasn’t gone Il be paying my gp a trip. Thank you for replying

[YYC-Girl in reply to imzi]

You want to test when you have the symptoms and I suggest fasting and post-prandial on the same day.

[Treetop33]

I get a lot of right side head pain and neck stiffness that I've asked to docs to investigate but which they ignore. It goes away when I up my Pred dose, which suggests it's some kind of inflammation. I worry it's vascular related, but it's also the site of a concussion I had some time ago. Very confusing and worrying when this happens and you don't know why (and no-one seems interested).

[Mandypandy1969]

I have been diagnosed with fibromialgia and I get a lot of discomfort in my neck, shoulders,shoulder blades and back. have done for a long time. xx

[Hidden]

I have the same and have just been diagnosed with fibromyalgia.