Does anyone have Large Fiber Polyneuralgia?

[Pollymarierose19]

18 months ago my rheumy's and Neurologist thought I had PMR/GCA. But I kept getting more symptoms. I just found out I have Large Fiber PolyNeuralgia.

[suzy1959]

I have just tried googling it- the only results were either PMR or fibromyalgia. Have you got a link to a definition? I’m just wondering what is different from PMR?

[PMRpro Ambassador in reply to suzy1959]

health.harvard.edu/diseases...

[PMRpro Ambassador]

Maybe change your title then? You have written neuralgia - which means nerve pain rather than neuropathy which is more generalised damage.

[Pollymarierose19 in reply to PMRpro]

I simply made a mistake and wrote neuralgia instead of neuropathy. Maybe you could give a person a break.

[PMRpro Ambassador in reply to Pollymarierose19]

My only reason for pointing it out was so anyone who didn't know would get the correct info - and anyone searching it in future would find it. Computers can't think outside the box yet when asked to search.

[Blearyeyed]

Just goes to show how it can get confusing for Patients to know which condition they have , and which of their issues if they have more than one of them (PMR, Neuropathy or Fibro ) is playing up in a Flare and needs an increase in medication .

Have they said it's because if actual nerve damage that could eventually heal or if it's a long term condition to be managed with Meds?

Have they decided you don't have PMR , or have they decided you have both?

What medication or treatment are they offering you and do you need to taper from the Steroids quickly?

It must be very painful for you , as a Fibro and Neuralgia sufferer I can certainly empathize , no wonder you felt like you didn't have full control of your pain .

[Pollymarierose19 in reply to Blearyeyed]

Hi, Blearyeyed. Thank you for being so nice. It's Small Fiber Neuropathy and Large Fiber Poly Neuropathy. It acts like PMR but the prednisone wasn't taking care of the pain like it should have. It acts alot like MS but very rarely is fatal. It's disabling and so, far there's not much they can do for pain.

[Blearyeyed in reply to Pollymarierose19]

Are they saying you have that , and don't have PMR , or are they saying you have developed it since having PMR and you need treatment for both?

I can empathize I have Fibro and Neuralgias as well as some Neuropathy , and I know how it can affect your mobility but also cause things like numbness and tremors and times of brain fog depending on how well you can manage the symptoms.

Have they put you on any medication or started an Physio or other treatments yet?