I have had big relapses in the past, leaving me unable to walk and major arm tremors. I have made good recovery from theses, however, I’m left with so many sensory symptoms which I never get any relief from.
I have a burning sensation all over the right side of my scalp and back, making being touched painful. I have a burning/wet feeling on my scalp and right knee. Pins and needles in my legs and feet, stiff hands and ankles, blurry vision, tinnitus, twitches and nerve pain everywhere. I take gabapentin, which doesn’t do much besides dull the nerve pain a little.
I know it could be a lot worse (having been a lot worse!), but all of these sensory issues are really getting me down and impacting on my quality of life. Spoken to my lovely nurse who is sympathetic but doesn’t offer any advice/solutions. If anyone has any advice on how to cope better I’d love to hear it, thanks for reading.
Thanks for your advice Carole. I’m unable to have massages as I can’t tolerate anything touching my back or tummy, clothing itself hurts me. Does anyone else have this problem? How do you cope?
If the gabapentin isn’t helping then you may need to either change medication or use a combination of meds until you find something that does work. I take amitriptyline for neuropathic pain (the burning that drives you mad) and I cannot manage without it. I have tried several times to cut it down but the pain comes back so I am stuck with it.
Your nurse should be doing more to help so maybe it is time to contact your neuro if she still doesn’t offer more than advice. You shouldn’t be left in pain and misery.
I would echo Carole’s advice about being careful in the kitchen. I had lots of cuts and burns as well when my hands were at their worst and I have learnt to pay serious attention to hot pans and sharp knives now. I also used to drop sharp knives on a regular basis and it’s surprising how quickly I can move my feet when I have to … (A sense of humour gets me by ) You also need to take care with baths/showers - test them with a reliable part of your body before getting in. I found it was no good testing with hands or feet when they can’t tell how hot or cold the water is …
I hope you find some relief soon. (very gentle ones)
Thank you Tracey. I have tried amitriptyline in the past, but couldn’t function the next day so had to change. Moved on to pregablin that did nothing at all and so have now been on gaba for about a year. Most days I just grit my teeth and get on with things, but then I have days like today where I just get so upset with it all. I’m not even 30 yet, makes me dread the next 30. I do take extra care in the kitchen and bathroom, luckily (!!) it only affects one side, my left side is completely normal. My nurse is retiring soon, so i get the feeling she’s wrapping things up, not actively helping. Maybe I should go see the gp, as I don’t even know how to get in to see the neuro. Asked the nurse for an appt some time ago.
How often do you see your neuro? Do you have any contact details for him? You could see your GP, that’s not a bad idea. If my GP doesn’t know what to prescribe (more often than not, which is why I go direct to the hospital nursing team!), then he has to refer back to my neuro for advice. That may be your route to the neuro. Either way, I would keep pestering all of them until something is done about it. I don’t believe in ‘put up and shut up’ these days.
) You also need to take care with baths/showers - test them with a reliable part of your body before getting in. I found it was no good testing with hands or feet when they can’t tell how hot or cold the water is …