Fibromyalgia Action UK
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fibromyalgia and Narcolepsy and cataplexy

Yesterday I was diagnosed with narcolepsy and cataplexy and this was missed 10 yrs ago ive actually had it for 40yrs no wonder i was always tired and needed day time sleeps but no one believed me. When my fibro pains started and I got diagnosed 6 yrs ago and saw all the other symptom I just presumed that must have been what I always had. In February this year I came off duloxetine and the next month I started having cataplexy attacks where I would collapse when laughing. I had to fight and see a second Gp because i wasnt believed but i knew i was right. Thankfully this GP believed me and sent me to a neurologist because of my pins and needles and also mentioned the narcolepsy. When I saw him in July he recognised the cataplexy and referred me too a specialist. I saw him yesterday what a lovely man after many questions he told me I was completely right. I guess if i hadnt come of the duloxetine I would have just gone on not knowing im now back on it and have to stay on it. I do have fibromyalgia caused in his opinion by the non restorative sleep affecting all my muscles. He also said many people get diagnosed with fibro because people dont recognise the narcolepsy symptoms. I dont fall asleep while walking down the road or while eating and I can plan my needed sleep breaks. Narcolepsy isnt always the extreme symptoms shown in documentaries. Narcolepsy with cataplexy can be diagnosed with blood tests and other test. I was a classic case and was misdiagnosed when I attended a sleep clinic 10yrs ago. I was so happy yesterday to find out I had been right all along. Today im upset and angry because if i had had treatment earlier i may not have ended up with all the added pains from fibro. I now have to come off amitryptiline and start taking a drug called modafinil, I can stay on gabapentin so now starts the fun of trying to readjust all my meds and see how things respond. My daughter has fibromyalgia and ame with me yesterday she could answer the same to all his wuestions so he adked her to ask our gp to refer her too. Has anyone else on here had the narcolepsy with cataplexy diagnosis?

3 Replies

Wow you are having a right ole time of it hun. I do not have either of these, unless you count be falling asleep within seconds of sitting in a comfy chair lol. But I think that is just sheer exhaustion on my part as when I go up to bed I am then up until daylight comes around again. But I hope you manage to get all the meds sorted and then readjust yourself xxxxx


Thankyou Ozzy Girl having a struggle adjustng to the diagnosis. Ihave to go for an ECG before I start on the new meds.


I wish you luck with it all. My GP practice nurse thinks i mayhave sleep apnea, mainly because I wake fighting for my breath three or four times in the night, when I actually get to sleep that is. It is actually enough tostop me sleeping. But I am not going for a sleep study because 1. I won't leave my daughter or hubby at night and 2. If they are right I would rather not know, I have enough going onwithout adding to the ever growing list xxxxx


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