My arms are feeling increasingly weak and leaden. Every night I have to prop them on very soft pillows and they feel as if full of lead. This is ongoing rather than a new symptom but the weakness is slowly increasing during the days too and I find myself carrying things such as plates only for short distances because I feel as if they have no power and I'll drop things. My SFN is much worse again everywhere. Is this all related or am I imagining things? (quite possible as I'm not sleeping a jot!).

When my neurologist tapped my arms I had no reflexes at all this time. I'm still waiting for word on when I might have my nerve conduction studies but starting to fret that things are progressing rather a lot. Hoping not because I'm due to spend a week visiting friends and family in London next week and will be 1000 miles from home and nowhere near my neurologist, rheum or local hospital. So I don't want this weakness,pain and fatigue plus tinnitus to dominate everything while I'm there on holiday or when travelling up and down. It's getting a tad spooky! (Just to add a Halloween touch!)

i have long fiber sensory motor axonal neuropathy. I have been getting that heavy feeling in my legs when walking any distance or when i tried to keep running over a decade ago. it feels like i am lugging around tree trunks. i also get the heavy feeling in my arms if i try to use them at or above shoulder level. jy hands also tire quickly but dont feel heavy! After 15 years i probably also have some small fiber involvement but have never been tested for that. it wouldnt make a difference in life style or treatment at this point to have it confirmed. Your electromyography (emg) nerve conduction study (NCS) may give you some answers as to whether you have any large fiber motor nerve involvement

Thanks Echoes. I'm fretting because I'm in for quite a long wait for my NCS as my neurologist wants me to see the consultant rather than only have the tests done. Could be a 3-4 months wait. So I'm left wondering if the tests are likely to show anything new because I had it done 20 months ago and nothing at all showed up. I think my lack of reflex response in arms is new and I think my arm heaviness on both sides is getting worse too. How is yours treated?

i try to stay as active as i can....lost some weight lately. to stay as mobile and maintain what stamina i still have. i have it for over 15 years now. i take many of the vitamins and supplements discussed here. Except for pain, there really is no treatment for it.

Well done you. Do you know what causes this for you?

it was exposure to toxins in 2001