New here

[ma73jon]

Hi everyone,

I am new here. I have had rheumatoid arthritis for a long time but was diagnosed more recently with fibromyalgia as my consultant explained to me that a lot of my pain is not consistent with rheumatoid arthritis but is consistent with fibromyalgia as are other symptoms I have.

The pain of the fibromyalgia is really bad and is sometimes unbearable. The pain keeps me awake at night. My doctor has prescribed amitryptilene but it doesn't help. I also use paracetemol which helps a little bit but not for long and then the pain is back as bad as ever.

I have heard that because fibromyalgia is basically to do with the brain signalling pain without an underlying physical cause, it is possible to 'rewire' or retrain the brain to not misperceive this pain.

Does anyone have any experience of this or any success with it? If so I'd be really grateful if you could let me know more about it and where I can go to find out more still.

Secondly, if anyone else has had success with lessening the pain of fibromyalgia using any methods

I would be really grateful if you could let me know what worked for you.

Very best wishes,

Ma

[ma73jon]

Sorry just to be clear my consultant diagnosed me with fibromyalgia in addition to rheumatoid arthritis so I have both of these conditions

[Cat00]

Hello ma73jon,Welcome to the forum.

The trouble with the concept of fibromyalgia pain being able to be lessened by "rewiring" is that although the brain is supposed to be very plastic and therefor in theory able to be changed, pain is pain. Whether it is hallucinated pain or pain from a cut or arthritis all pain is signalling in the brain, therefore you might be able to rewire and not feel fibromyalgia pain but that theoretically would be true of arthritis pain too yet no one suggests you could meditate, or whatever, your way out of that, yet that is what they would be asking you to do.

Stress, however, has a very real impact on pain, stress and low mood open up the pain path ways and enable you to feel more pain so meditation, or whatever, might help you there.

Another problem is that no one actually knows what causes fibromyalgia and although theories that fit best seem to suggest a central nervous system problem 1 they don't actually know and 2 there have been many many studies that have found physical differences in fibro patients compared to controls. So even if it starts as neurological it seems to change us physically and therefore becomes more "real" as some people might see it.

[ma73jon in reply to Cat00]

Thanks so much Cat00

[fibropatient]

Hi, 45, or so, years ago my RA Consultant advised me that my fibro was brought about by not sleeping deeply enough when my rheumatoid was active. So he advised Amitriptyine 10mgs tablet to be taken at night. Initially this work well but over the years I have needed to increase the dosage and for the last 20 years The dose that really helped me was 100mgs. I have found that I sleep very well and wake up refreshed and able to get on with my life. Of course I suffer at time with fibro pain, fatigue and a foggy brain whcih stays with me or differing lengths of time from 1 week to 1 month or so. This is when I need to rest, really rest by not doing any thing and take pain killing drugs which sadly are not always effective. So my advice to you is to increase you amitriptyline by 10 mgs at night for about 1 month and so on if your doctor agrees. Good Luck.

[ma73jon in reply to fibropatient]

Hi Fibropatient, its great to hear from someone who also has experience of having RA and fibromyalgia together. I have been taking 15 mg of amitriptyline which so far has not helped with the pain. I have been worried that increased doses of amitriptyline would make me very sleepy during the day, but that does not seem to be the case with you. It is very interesting that a massive increase in amitriptyline has helped you, so thank you for sharing this

[Cat00 in reply to fibropatient]

I've been on between 50 -125mg, currently on 90mg, of Amitriptyline for 20 years and I sleep very badly. Amitriptyline has quite a few well documented side effects, in particular heart problems and dementia, I would be very cautious recommending anyone take a high dose of it if they don't have to.

[ma73jon in reply to Cat00]

Thanks Cat00 for making me aware of this

[Cat00 in reply to ma73jon]

You are supposed to have an echo every year if you are on Amitriptyline, although I've only been given and echo about 3 times in all the years I've been on it. People complain about dry eyes and mouths which I have too but I sleep so badly that I take it anyway. Lots of people worry about cognitive decline on Amitriptyline, my neurologist says my sleep is so poor it outways the risk, however I do know people who refuse higher doses because of this. Having said all that It is a very old drug, doctors like it because they know a lot about it, they have a lot of data on so it so it's considered a good place to start.

[ma73jon in reply to Cat00]

I'm just really glad you have made me aware of this issue Cat00. I have worked in the care sector previously and have seen how terrible dementia is. I have been taking amitriptylene for about a year and this has never been mentioned to me by my doctors. I consider it to be a very serious issue.

[Cat00 in reply to ma73jon]

It was never mentioned to me either I found out about on this forum years ago. I don't know how high the risk is but when I talked about it to my neurologist she didn't deny it. Maybe have a chat with your GP and see what they say, it may be a very small risk, I haven't looked into because I'm too dependent on it.😬

[ma73jon in reply to Cat00]

👍

[MW07]

Hi, I have RA and Fibromyalgia too (this fairly recent). I take 1 Amitryptiline and 1 Noritryptiline at night along with 2 Co-codamol. Seems to help. Co-codamol during day as required. I also started Escitaopram for depression that came with the Fibro and it has helped enormously.

[ma73jon]

I'm pleased that you have found something that helps and thanks so much for telling me about the medications you are taking.