fibromyalgia after meningitis

[Fozzy81]

had bacterial meningitis last march and have been suffering from the effects of that , have been in constant pain all over , been to the doctors and had multiple scans, tests , mri with nothing conclusive, how do you get. Difianative diagnosis it’effecing my job as I’m a carer and also my life , the doctor prescribed me neproxen but that’s for the headaches, and don’t work , struggling to sleep , legs get restless

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

An illness such as meningitis could act as the trigger for fibromyalgia, and as other tests have been inconclusive you may need to ask your gp directly have they considered fibromyalgia as a diagnosis

[Fozzy81 in reply to Hazel_Angelstar]

They haven’t said anything about it being fibromyalgia, also my mum had it, but from things I’ve read about it on line and what I know from when I’m mum had it everything is matching

[Hazel_Angelstar Administrator FMA UK Staff in reply to Fozzy81]

Hope you can get some answers

[Fozzy81 in reply to Hazel_Angelstar]

Hope so too as the pain is getting ridiculous which is making me snappy

[Josie-Anne]

Hi Fozzy81,

I know how you feel I had bacterial meningitis in 1994, was in a coma too, but my rheumatologist thinks that’s where I’ve got the fibromyalgia from, my body constantly hurts all over whether it’s warm or cold weather. I get shin splints and restless legs which I’ve was put in amitriptyline for, pregabalin and a fentanyl patch patch because I couldn’t have morphine patch due to been allergic to plasters. I too any a carer but now I can’t lift and do I can only do the shopping, cleaning, ironing, take to any appointments which I sometimes struggle with too, so I do feel for you, I was told that I would get a lot of bad headaches after the bacterial meningitis and have tinnitus but am grateful that it didn’t affect any of my limbs, hope this helps

[Hoofprints]

So sorry to hear of your problems post-meningitis.

I had fibromyalgia before I had presumed viral meningitis several years ago and relate to what you are describing, especially about the headaches.

I found the following charity to be an incredibly useful source of information and both practical and moral support after suffering meningitis:

meningitisnow.org/

Please do consider contacting them as they may be able to help you in your journey for answers, as well as treatment that offers some relief from the pain you describe (they paid for a course of cranial sacral therapy for me for example).

Turns out my fibromyalgia was probably a rare autoimmune disease all along - urticarial vasculitis syndrome - discovered when I had a blood test for anti C1q antibodies, which was highly positive. It was a rheumatologist who found it. I'm currently cared for by a rheumatologist, neurologist and immunologist.

As fibromyalgia is essentially an inflammatory condition according to latest research, but one that doesn't show up in the bloods as presenting with typical inflammatory markers, it's well worth excluding all other causes, including autoimmune disease or low-grade infection/meningism, before accepting the diagnosis of fibromyalgia. Inflammation in the body causes a whole host of problems and various presentations.

I wish you luck in finding answers and help for your symptoms 🍀 Don't give up!

[matsellh]

I had viral meningitis in 2015 which has caused fibromyalgia and occipital neuralgia. I get headaches and pain. I see the neurologist every three months for nerve block injections and am having Botox injections next time. I get occasions where my face goes numb and am weak. I had to stop being a teacher and work just a few hours a week as a teaching assistant.

Just got to keep going.