Extreme head pains combined with upper body pains

[erizo]

I suffer from extreme head pains at times that go on for days and days and days. These are often combined with pains in the upper part of the body, particularly the back, shoulders, arms and neck. I suppose it is a kind of crash, but a pain-filled crash. Currently I am almost a week and a half with such pains. They neutralise me totally, as I am in so much suffering, I can not go out and lay supine most of the time. Pain killers such as paracetamol, even those with codeine or morphine in, don't seem to help much either. Do other sufferers of ME / CFS suffer from these episodes of severe head and body pain (if it was just the body pain, I could deal with it, but it is the head pains that I cannot endure. They are diffuse and continuous and extremely debilitating)? Are there suggestion of what I can take or do to help reduce the pain and suffering?

 

[pattismith]

Hello Erizo,

I have often neck muscle pain and headache and what helps me is paracetamol + piroxicam + coffee + massage.
I use low dose of the drugs to prevent stomach side effect

 

[Celandine]

@erizo This sounds like a coat hanger headache--
From https://myheart.net/pots-syndrome/pots-symptoms-signs/
"Coat hanger headaches, which primarily cause pain in the head and shoulders, are a highly common and troubling symptom among those diagnosed with POTS (Khurana et al). Coat hanger headaches are often worsened with standing or exercise and relieved by rest."

If you haven't investigated whether you might have POTS, could be an idea to investigate. POTS UK's website is very good.

Other idea...have you seen a manual practitioner like an osteopath, particularly one that does cranial stuff? Even better if you can find one experienced with ME. There could be a mechanical cause.

 

[erizo]

I don't have pots as far as I know. I am not distressed by standing at rest.

 

[Tella]

Have u ruled out a csf leak? Anyone with ME should do so if possible, especially with your symptoms! Hope u feel better soon

 

[erizo]

Have u ruled out a csf leak? Anyone with ME should do so if possible, especially with your symptoms! Hope u feel better soon[/QUOTE
Thank you for your suggestion. How do I rule out a CSF leak? What kind of doctor / specialist do I need to see for this and what kind of tests are carried out? I live in France where these things are ostensibly covered by the health system, but very few doctors here have even heard of ME in this country ...

 

[Alesh]

Yes, I have pain in the left part of my head. It is permanent, sometimes it is like an "inflammation" sometimes it is pain as if somebody is drilling in my head. Both is unbearable. Fortunately the intensity varies and ibuprofen helps to some extent.