Had sensory symptoms, burning, tingling, pins & needles and trickling water sensations from the very beginning-it’s what took me off to the GP. They flare up when I’m in relapse, and new ones appear, but are always there in the background during remission. They are on the right side of my scalp, my tummy & back and my thigh and foot. I take gabbapentin 1800mg a day, like I said it keeps it in check but never gone away fully. It’s flaring up at the moment, not in relapse, so why? It’s starting to get me down, I’ve forgotten how it feels to be normal. I also am struggling with hubby as I can’t handle being touched on those areas, which in turn means sex is either a no go or very difficult. Will I ever get rid of it? Why does it flare up for no reason? Is there another drug I could take? Sorry for anon but bit embarrassed. Thanks
Hi Anon Not sure I can help but wanted to reply. I get loads of sensory symptoms. Which are not major but can cause ongoing minor pain which is distressing. Why do you say no relapse? My understanding of a relapse is a new symptom which has not occurred for the past month and lasts for longer than 24 hours. Do you have a MS nurse who could advise you about the best medication. Hugs Min xx
Hi min, I know it’s not the worst symptom I could have (having had disabling symptoms in the past) and so I’m lucky in that respect, but it’s so painful to the touch and after 18months of it, in varying degrees, I’ve had enough. I don’t think it’s a relapse as they are not new symptoms just increasing in the amount of pain. Have spoken to my nurse but the conversation never goes anywhere beyond upping the gabapentin, which is not a long term solution. It’s impacting my marriage, I don’t feel like the woman my husband married, he’s supportive, but still a man with needs. Just feeling so low with it all, so thanks for the hug
Maybe the nerves are permanently damaged now? I know its not want you want to hear, but that could be the cause? Have you tried the other painkillers? Im now on duluxetine after all failed and it works a treat
Yeah probably is permanent damage, still don’t understand why it’s worse now than last week :-/ have tried pregablin which didn’t help at all, tried amitriptyline too but couldn’t tolerate it. Really just feel like giving up , hopefully tomorrow will be s better day. Will mention the duluxotine, thanks for the tip
Hi anon I understand you. This is one of my symptoms too- since my last relapse. I can’t stand to be touched. Feels like someone keeps turning the shower on my back and legs too. So weird but not painful. I have awful pain too- back/chest. But the most awful is if someone touches me or brushes off me or gently rubs me- its like torture. It is horrible. I also have numbness down below - embarrassing- so between being numb in one area and sore all over my back, abdomen and legs I can’t let my husband near me. He always jokes that I’m lucky he doesn’t stray and blah blah but its so horrible. I almost cried myself to sleep last night… Replying anon too as I’m too embarrassed
Im do sorry to hear that anon, like you said, I understand you. Are you taking anything to try and help? I know what you mean about the ‘jokes’, I know that their just trying to make light of a bad situation, but it doesn’t help. I end up feeling so guilty that I’m not able to be me. I don’t know the answer for either of us, just keep asking for help and try to stay positive. By the way I had numbness down there earlier on in the year, it has subsided now though. I hope that your passes soon too, as it is really horrible. Take care of yourself x
Hi anon I’m on lyrica but not sure if its helping or not really… It’s horrible for us as a couple but I actually shake if he comes near me and he isn’t pressurising me. The fatigue, pain, tingling, headache, vertigo, vision and eye issues… I feel like someone who is 90 not 30. My poor hubby didn’t sign up for this life. What if he does stray ?? I don’t think he would but … I hope knowing that someone else has similar issues makes you feel a bit better… Anon # 2!!
Hi Anon I’m the same and been like this now since 8th January it is the most uncomfortable sensonary feeling I have ever had. Saw my Neuro last week & he’s of the view because its been so long & is worse at night after a relativley busy day it’s here to stay (permenant nerve damage as #poster 5 says) I really feel for all of you thats suffering this and like one of the Anon says I too sometimes get into bed & could cry myself to sleep. Hope it goes eventually for you.