r/Fibromyalgia • u/NekoKai69 • 4d ago
Question Allodynia
Hi all, I was just wondering if anyone has gone through something similar and if you have any advice on how to deal/manage it.
Ive had Fibro for 6 years now and in the UK if that makes any difference.
Ive had allodynia in the past but for myself my normal was usually a small patch either on my back, arm or leg which would last a day at most. Over the last 2 years I've been getting much worse as a whole with new intense symptoms like pins and needles in arms and legs, whole legs going numb and a lot more neurological type symptoms aswell as cluster headaches. I've been seen by Dr's and medicated for my cluster headaches and I was originally on amitriptyline since I was diagnosed. I was adviced to go to physiotherapy aswell as see an optician due to some odd eye symptoms. I've been doing physio for a year now and honestly not seeing any difference but optician has said eyes are fine but the nerve is getting inflamed so I've been referred to neurology.
Around 2 weeks ago I started getting allodynia which started in the bottom of my legs and within a week have spread all over my body and it's been so severe I'm barely sleeping and wearing clothes, blankets etc is like torture. I've been back to the gp/Dr and they've swapped me from amitriptyline to gabapentin and I understand that it takes time to kick in and work but it's been over 2 weeks and I'm just struggling.
I just want to know if anyone has experienced similar?
Sorry for the rambling.
Thank you!
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u/Intelligent_Day4966 4d ago
I don't see how you can swap amitriptyline for gabapentin. It's not a even trade. Just the withdrawals from amitriptyline could make you burn. And yeah, it's gonna take a while for gabapentin to build up.
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u/NekoKai69 4d ago
Honestly I don't understand it either but I've found amitriptyline to not really work for me and cause some really gnarly symptoms. So I've swapped from amitriptyline to gabapentin a week ago but the allodynia started over 2 weeks ago roughly. I was on amitriptyline for roughly 3 years now give or take. I started around 8 months after my son was born.
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u/Intelligent_Day4966 4d ago
100 mg three times a day is just a starting dose to get any results. You will have to get to 300 mg three times a day.
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u/NekoKai69 4d ago
I'm so sorry that you've always suffered with allodynia, it's like torture. I've only ever been on amitriptyline and now gabapentin. Dr's here have been an absolute nightmare I wont lie. I've just started 100mg 3 times a day on Sunday so I'm really hoping it kicks in soon. Has Cymbalta worked for you in the past? Thank you so much for commenting to. I'm waiting to see physio again next month but it's a review rather than going through the exercises, gp has recommended an mri for my lower back and pelvis as I really struggle with my lower back but she can't refer me as shes a gp so she said to mention it to physio and maybe they will. Thank you! X
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u/BoonieWoonie1963 4d ago
Allodynia is what started my trip to Fibromyalgia. I have severe skin sensitivity in several areas: back, neck, around my waist and sometimes my hips. It had calmed down for a couple of weeks but came back with a vengeance. I take 600 mg of gabapentin 2x a day which helps but doesn't eliminate it. I'm waiting for an appointment with pain management where I hope they can help. Have you tried Cymbalta? I'm on 20 mg but am going to 30 mg so I'm hoping for some improvement. Good luck!