I was diagnosed by a rheumatologist about 8 years ago. The GP I saw about a year later put me on to Nortriptyline and I've been taking 50mg every evening to help with nerve pain overnight and sleep issues.
Now my present GP has persuaded me to come off it - I'm OK with this as I don't know if it's doing anything anyway now and I'm coming off it gradually. I tried to talk to him about the pain I get, which is usually flashes of nerve pain everywhere which can last maybe a few minutes, but not constant pain in one area. He told me that fibromyalgia was pain all over the body, but not flashes of nerve pain, so, in other words he didn't believe that I had fibromyalgia. I also have IBS, osteoarthritis and sleep problems, including fatigue.
So, he hasn't offered anything else to replace the Notriptyline. I've got paracetamol, co-codamol and ibuprofen which I'm managing with, but I did feel irritated by his comment.
I'd be interested to know if others have symptoms of fibromyalgia which are similar to mine.
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Genevieve
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Hi there, Fibro is known to be all over the body pain not flashes of nerve pain. So I think your GP maybe correct to be honest. I am sure many will have their own opinions on this. But I personally agree with doctor. Not sure why you would feel irritated by the GPs comment?
hi, sorry to hear about this, I personally think, this doctor may be right, the type of nerve pain you describe, doesn’t sound like fibromyalgia, you could have a completely different problem, and if it is ongoing you may need a MRI to see if it shows anything, sorry it has annoyed you, but fm is all over the body, and it doesn’t just feel like nerve pain, and it can last constant for days months or more. Go back and have a chat and see what happens. Good luck.
Have you got widespread pain but also have short periods of nerve spasms and pain that is more intense?Was that also happening before you started to taper off the Nortriptyline?
It is possible to have a number of pain syndromes at once.
At a recent pain clinic assessment with my daughter the Pain Consultant said that the combination of Fibromyalgia, IBS , Migraine and Nerve Spasms we have , originally triggered by our Ehlers Danlos Syndrome , is a condition called Central Nervous Sensitivity Syndrome.
This is a relatively new umbrella term for the overactivation of the central nervous system to the input of pain signals and overstimulation caused by various stimuli to different areas in the body.
My daughter and I also suffer with Dysautonomia so that autonomic nervous system dysfunction also makes the CSS more severe.
So it is possible to have the widespread chronic pain of Fibro and also suffer from periods of nerve spasms in various parts of the body which come and go in short periods.
If the nerve spasm issue began after you started to taper of the Nortriptyline it could also be a type of withdrawal symptom.
Whatever the cause , if your pain isn't in control the GP should not just be tapering you off your current medication but trying you out on other medications that can help relax nerves and help pain. Examples are Garbapentin, Duloxetine, Pregabalin, Amitriptyline or a combination of these found by trial and error as the combo and doses that work for you.
The GP also can't just dismiss a previous diagnosis by a Consultant unless they have done thorough tests to rule out the original diagnosis. If the GP has made a separate diagnosis for another nerve issue it does not mean you don't have Fibro as well. Many of us have more than one condition.
Whatever is happening I wouldn't sit back and just take this decision. Your GP may not really have that much knowledge or experience about treating Fibro or how the illness can effect you. I would suggest that you politely but firmly request for your GP to refer you to the Pain Clinic and a Neurologist to help assess what is actually causing your new symptoms and ongoing pain. I would also consider looking up the info on Fibromyalgia UK website and printing off the details about treatments and request that they prescribe you something else to help with your nerve pain.
I would also suggest that you stop taking Ibuprofen which is not good for your stomach , especially in combination with Cocodamol and will also make your IBS worse.
Thank you all so much for your replies, you've been very helpful. I think I'll take your advice and go back to my GP. I've had the nerve pain for some time so it isn't related to coming off the Nortriptyline. I also have bursitis on both sides and a rheumatologist told me that this is also a fibromyalgia symptom. So, as you can see, I'm rather confused about it all, but I will definitely have a look on the Fibromyalgia UK website, thank you, Blearyeyed. I was very interested to hear about Central Nervous Sensitivity Syndrome. I used to have migraines when I was younger, but now sometimes get silent migraines - just the aura. Thank you again for your help.
When I went to to the pain clinic one consultant would say I had Central Sensitivity Disorder and then the next one would totally disagree. By the time I had my last visit none of them agreed with each other, I saw 4 different consultants 4 different diagnoses.Because there are no diagnostic tests for any of these disorders it's always an opinion ultimately and could be argued ad infinitum.
As far as I am aware CCS and fibro are treated the same anyway, that is to say NICE guidance for chronic pain is to cease the use of painkillers and try instead antidepressants and/or talking and other well being therapies, if you can get them, long waiting lists prevail.
Like Blearyeyed said I wouldn't touch ibuprofen with a barge pole. It's a nasty drug. I read a paper last year that found a corrolation between ibuprofen use for short term pain gives you a 1.76 increased risk of developing chronic pain. That research is not enough to say anything conclusive but I wouldn't give it to my kids. They didn't find any correlation in paracetamol use.
Cocodomol will be metabolised into morphine in different amounts depending on the individual. Morphine It is widely considered to not help chronic pain, just the withdrawal from it, it's a negative feedback loop. Once you get past withdrawal there is strong chance you'll notice it doesn't help fibro pain anyway. It can still damage your body long term.
Thanks for replying. It's all very confusing, isn't it? My GP has persuaded me to come off Nortriptyline because he has read that this and amitriptyline were suspected of leading to dementia in older patients. Hence the reason I'm taking paracetamol and co-codamol.
Yes I'm on 90mg of Amitriptyline prescribed by my neurologist, I have chronic migraines and now Hemicrania Continua it seems. I was concerned about the side effects that negatively impact cognitive function, but I sleep very badly and Amitriptyline helps my sleep, my neurologist thinks on balance it does me more good than harm. I do think these things should be frequently reviewed though to make sure that this continues to be the case. I've just taken myself of the contraceptive pill because I was having severe bladder pain. I read somewhere it might help, annoyed no doctor suggested it, it made a huge difference to my bladder pain coming off it. You have to be your own doctor, I'd been going to GP's for 3 years put on many drugs, in the end it was me that fixed it.
Hi, I have fibromyalgia and arthritis. For the fibromyalgia pain I have duloxtine 60 mg . Also naproxen as and when needed. I only have cocodamil 8mg no higher as and when needed. These work for me. Hope this can help.
Thanks for you reply. I have osteoarthritis, too, but am now just managing with paracetamol and the occasional co-codamol. My co-codamol is 30/500 which is pretty high - I'm thinking of asking for it to be reduced - but I slipped a disc in my neck last year and was definitely grateful to take it then, even though at that dosage it still wasn't enough to completely kill the pain!
Hi Genevieve, on a personal level after trying different medications and this with that and this the one that works for me until my next dose is due is a combination of co-codamol and naproxen. I had tried naproxen before but it didn’t do anything until a few years later I had it in combination with the co codamol. The only problem I have had recently is that the pharmacist have terrible trouble getting hold of the co codamol and so I often get prescribed solphadeine which doesn’t help anywhere the same. I don’t know if anyone else is having this issue. I’ve managed to get a face to face appointment tomorrow and a double appointment no less😊to go through most of my medication so 🤞take care 🤗🤗
sorry, also meant to say that I was told that as I have a blood disorder, protein’c’ deficiency that I shouldn’t be taking naproxen because of this condition 🤷♀️so that needs discussing tomorrow too. Am slightly anxious about what I am going to be able to take and that it helps me with pain🙏 xx
Thanks for replying. I do hope you've been able to get something to help. I can't take Naproxen as I have high blood pressure and Naproxen can affect it.
I have how you describe your pain everywhere on my body..no 2 days the same.I m on amitriptyline and duloxitine...to be honest these allow me to sleep..and then function next day..pains striking as and when.Was put on nortriptyline last year came off as wide awake alnight. TAKE JUST PARACETAMOL FOR PAIN..I also swim 4 to 5 times aweek.Hope this helps
Now I'm confused as I have bits of me that ache in a rota, as well as sometimes sharp pain that goes off (had this with glandular fever years ago, and if I don't sleep well it comes back). I started with ongoing pain in lower left leg, like shin splints and then elbow and low arm and wrist pain on both sides, and coccyx pain. I developed hormonal migraines in perimenopause. I have had IBS since my early twenties. I have dry eye syndrome. When I saw a Rheumatology consultant, she said definitely Fibromyalgia for the pain. I had nerve conduction tests and they came back normal. I'm on Nortriptyline minimum dose of 10mg, as I can't tolerate anything else or higher dose. If I pace what I do, and limit my walking and sitting/standing, and take the pill on time; it's not too bad. I can't work, and have a quite limited life, which I'm going t try to expand.
Thanks for your reply. Yes, it's all about pacing, isn't it? I try to do the same, but am not very good at it. Take care and I hope that things improve for you.
Some doctors make me wonder how they actually became doctors. Pain comes from our nerves, so of course fibromyalgia is nerve pain. Even inflammation comes from swells throughout the body pressing on and irritating nerve fibers. Ask about gabapentin(Neurontin). It works well for me for fibro pain. I take 400mg 3 times a day. Still have a few sharp pains here and there. But nowhere near as bad as before I starting taking it.
Yes Genevieve, I am very similar but at time have pain all over too. My warning signs before I get bad are pain around my neck and shoulders intermittent and my feet, if I dont stop and rest it will be a few days in bed resting and bad fatigue. Im on Noratiptaline and refuse to come off it as when I reduced them I became worse, please try another doctor at the surgery and plead your case. Good luck
I was also diagnosed with fibro by rheumatologist after being under them for about 12 years, my doctor gave me amitriptyline, but I struggled with drowsiness. I was then referred to occupational therapist and pain clinic, I have all the same symptoms as you which are all associated with fibro, my therapist is also a fibro sufferer so is very understanding. My nerve pain is usually worse at night in bed when I get the shooting pains down my legs and left arm, I have a trapped nerve in my neck and lower back and was put on Gabapentin after trying numerous other tablets, am currently waiting to see neurosurgeon after having an MRI on my neck I was told only thing that will help is surgery, don't be fobbed off by gp, they don't usually have any experience with fibro. Ask for a referral to occupational therapy see if they can help. I was always told not to be fobbed off with it being my fibro. You know your body better than anyone.
Hi Genevieve. Yes, so confusing with all the different opinions. I have those flashes of pain. It's like a flash of lightning or electricity that, for me, only lasts around 10 seconds, but can just keep happening continuously and in various parts of my body, even in my eyes. Very painful.
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