so I have just got off the phone to my neurologist.... I was diagnosed with fibromyalgia in 2012 and today I have been diagnosed with Me/cfs.... I feel relieved that I have answers to my symptoms. I had a nerve conduction test done and she said that came back normal... I have strange sensation down my legs/arms/uppers body like water trickling down my legs. Then in august developed weakness in my upper thighs then 6 weeks later the same in my uppers arms... like I had overworked them in the gym! I had a constant headache for 19 months and no medication worked until I was put on Amitriptyline for pain for arthritis and that actually took the edge off my headache but done nothing for the pain but I’m great full that it’s helped with my head! The fatigue is like nothing I can describe.... I go to bed at 10 sleep all night, wake up at 9am then up for an hour and sleep for 4 hours (more if I didn’t push myself to get up) then sleep normally all night) apart from being woken up in pain with arthritis to take pain relief. Does anyone else have these symptoms?
Sorry for the long post, Im really wanting to speak to someone who understands. X
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Dazakella2010
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Hi, the strange sensation of water trickling down your legs is a form of nerve/neuropathic pain.
I thought I was going mad until I did a pain management course and mentioned it to the nurse ... Who then explained that although it's called nerve/ neuropathic 'pain' ... It can be any type of sensation (heat, cold, tingling, pins & needles, numbness etc)
Hi there,I am diagnosed with both, thought CFS/ME came first.
I have weird sensations (GP just look at me like I am mad lol), still I know what I feel. Periods of extreme sleeping patterns..swings from heavy sleeping (10+ hours at night min & napping day) to extremely poor sleep (constantly waking, wierd dreams, restless legs etc).
Can I ask re your pain clinic..what did they do. Mine only offered talking pain session ...I don’t want to sit and talk about it tbh.
No you can be diagnosed them in any order.... I was diagnosed fibro in 2012 and cfs/me yesterday after 2 years of symptoms. I have a few other medical conditions including blood cancer so it was difficult to distinguish the symptoms as I’m on chemotherapy
Yes, that what I was saying...I was diagnosed with CFS/ME then diagnosed with Fibromyalgia separately a good few years later.I’ve couple of other diagnosis on top and often think there is a interconnection within.
Hi, I have fibromyalgia and polymyalgia rheumatica. I was diagnosed about 3 years ago. I already had a diagnosis of classic migraine with aura and cluster headaches. After my GP putting me on prednisolone for PMR, I moved my GP. He referred me to the lead rheumatologist at my local hospital. His diagnosis was primarily fibromyalgia and PMR. I was already taking amitriptyline for my migraines as I was having at least two per week. The amitriptyline cut the frequency of my migraines to approx. 2 per month. Then after my diagnosis of Fibro and PMR I read that Amitriptyline was a medication for Fibro. I honestly don't know where I would be if I wasn't prescribed that? Anyhow, following numerous tests, scans, CAT scan, MRI, I was also diagnosed with ankylosing spondylitis, Lupus, chronic kidney disease, diabetes borderline 2, arrhythmia, arthritic spurs between C5 and C6 which are pressing on my spinal column nerve, which affects my arms, hands and thumbs/fingers, meaning it is difficult for me to pick small items up (and that includes my medication). I have dead legs sometimes and tingly ripples of something like an electrical current travelling up and down my legs. I too go to bed around 10.00p.m. and get up with my husband who leaves for work at 7.00 a.m., I then return to bed. I normally wake again at around 9.30 a.m. and after sitting down with a coffee I am ready for sleep again and have a nap (back on or in bed) for about an hour, then feel quite refreshed, this only lasts until lunchtime when I feel really sleepy again, so I have a lie down on the sofa and doze off again. I have a normal couple of hours in the evening before going back to bed .... that is my day and that is my life. My pain from fibro comes and goes, some days I get up and feel I could conquer the world, and I spend most of the day cleaning, the next day, and the next, and the next I find myself in the sleepy state again. I no longer go out (wouldn't even if covid wasn't around) as I never know when I will have had enough and need my bed and I know that others wouldn't understand and would just think I am a lazy person, and just "can't be bothered" its not like that at all, I would love to spend time with long lost friends or my family and grandchildren, I know that this is not possible, as mentioned above, due to the covid restrictions, but even without those I know I would still be suffering with depression, anxiety and social phobia. I have an appointment to have my first covid jab this afternoon, and to be honest I am terrified, not of the jab, but the fact that I have to go out, I am going somewhere strange, to see people I don't know and that's how I am today..... The tiredness by the way isn't really helped as I am on Zapain, which is co codamol, but the dose is quite high, I am on 30/500, whereas "over the counter" co codamol is 8/500, so I am on a strongish dosage and one of the side effects is fatigue, so I guess I am adding to the fatigue side of things with medication I take for pain. I can't really add more, except to say that I love my family, and without their support, however they give it, I think I would be just alone and very very sad. I don't cry any more, I can't because the tears never come, my eyes and my mouth are always dry and my finger nails are so short, if I carry on biting them I wont have any nails left at all. I hope that whoever reads this can associate themselves with how I feel and know that they are not the only ones who are having a job "keeping it all together". Don't watch sad tv, or listen to sad songs, take yourself back to a happier and healthier time period of your life and try and smile as much as you can, smiling does help, as does laughter (watch some more comedy shows it does work). The feeling of happiness disappears all too soon but at least you felt happy for a while. So take care, love everyone you hear from or have visit you and don't sit there worrying about those who you no longer see, it is them who have a problem and not you.
Thank you for spending the time reading my "book" and I wish you all happiness at some point throughout your illness. By the way, I am a soon to be 69 year old grandmother with a kind loving husband, four children (all in their 30s or 40s) and 10 grandchildren aged from the youngest at 5 years old to the eldest, now being 23. So there you have my story in a bigger nutshell than normal, but at least I have opened myself up to the world ... perhaps that will make me feel better about myself and the world I live in.
Love to you all.....
❤️
have you tried Ambroxol for fibromyalgia pain? it has sodium channel blocker properties that make it much more effective for nerve pain than other meds, some research links on it below. I use it for the nerve pain in my shoulder from Parkinsons, and to slow my progression & keep my brain fog clear, my neurologist is aware and is ok with it.
Hi there, yes it took the edge off for me but then my cardiologist took me off it as it is bad for heart he said! I get by with pregabalin and tramadol!
I have Fibro, and I can understand when you talk about water trickling down your arms and legs, it's a weird feeling but I never attached any particular meaning to it.
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really confused now ,can someone explane? cfs vs me?
