hiya
Diagnosed with RA couple years ago and now on leflonimide and been doing ok ish. Had Covid 3 months ago (not sure relevant) but also am horrifically stressed, eating bad and poor sleep (yup I know🤦♀️) Thought I was heading to a flare. Routine appointment with RA consultant on fri and now diagnosed with fibromyalgia. Wants me to go on amitriptyline (am VERY reluctant - I know a few people who have tried it) Could do with some positive stories and pointers please. 🙏
I’ve been on amitriptyline for around 11yrs. Initially it does leave you with a hangover feeling, but that disappears after a short period. It does wonders for my nerve pains and muscle spasms. I have no side effects, other than combined with other meds I take , it contributes to a dry mouth.
Thanx, I’ve just heard so many horror stories about fatigue- I find it hard enough to get going in the morning as it is 🤣
I was prescribed amitriptyline while I was waiting for a Rheumatoid diagnosis some 7 years ago to help me sleep. I find it helps with the difficult sleep situation as I've had episodes of insomnia for many years. It also helps with muscle pains. The only drawback for me is a horrible dry mouth in the morning. I hope this helps
I think everyone has to try various options until finding what works for them. I tried Gabapentin until it caused awful anxiety and, along with my GP, decided to wean off it and have no meds for at least 6 months. That was a few years ago - since then I’ve relied on exercise, ‘me’ time, trying to reduce/cope with stress better and eating better. I now only take RA meds with Zapain as and when I need it. It might also help that I only work 3 mornings a week, and have a very understanding boss!
Good to know 👍
I have both and I take pregabalin I only take mine at night as wanted sleep and though suggested take throughout the day I only wanted it at night. I also take fexofenadine as I tend to get very itchy too with fibro for night as well. It's a what works for you when I have tried to come off the fibro meds I notice within 5 days it all rolling back in with more force.
I find I have days fibro is Queen I call it the bitchy sister of RA and some days the RA in more force when it a double whammy its a hard hard day!
Good book to read Dr Leon Chaitow Fibro & Muscle Pain helps you understand the ways it works etc. Can get it on Kindle or free on his webpage notes....
Thanks for that. I can’t help thinking when life calms down and I get less stressed that can only help.
I think the issue is that life is stressful whether illness/money/work life etc so it’s finding how to manage that but …………..🤪
yeah unfortunately all out of my control- a son with long term health issues, one parent with dementia and the other with major physical issues. And working part time too. Been a challenge lately 🤣🤪
Hi, I have Lupus and Sjogrens. Consultant put me on 5 mg of amitriptyline about three years ago. I am very medication, sensitive, initially very very groggy the next day. Was advised to take medication earlier in the evening as I still had very bad fatigue next day, reduced it to 2.5 and that sorted the problem. I would sleep straight through for about 5 hours but maintenance steroids disturb sleep after that. Recently increased to 5Mg as having more pain at night but not feeling groggy next day. It can be trial and error and we all react differently. Best of luck
Another good book, I found, is The Pain Free Mindset
Hi K2013,
When I was diagnosed with fibromyalgia the pain clinic put me on Amiltryptaline. It really helps me with sleep and I take two every night. I do wake up at night with pain but this med helps me get back to sleep. The only side effect I’ve had is a dry mouth in the morning but I’m okay with that.
It’s horrid when stress levels are bad as it affects fibro and RA. 😱😱😱
Kati xxx
My daughter was on amitriptyline for headaches and she had to get lots and lots of sleep or she'd just feel tooooo tired in the morning. I would say she slept 9-11 hours a night. Sometimes even more than that. I think that it would be helpful if you are able to rest for long enough. She didn't have any negative side effects other than the need for lots of sleep.
I think it's different strokes for different folks when it comes to meds. Some people are fine with most things. Others are sensitive to everything. I fall into the latter. Only way of knowing is trying I guess. I hope you feel better soon.
Just as a side note...I found quitting sugar and gluten helped with swellingband pain. Again...helps some not others.
That’s so right - I tried various meds after gabapentin & all with bad reactions! I also find sugar reduction, and caffeine reduction, helps.
I'm glad you've found something that helps. I think sugar is problematic for many...and it's in everything! I don't eat anything in a packet these days. Interestingly I find caffeine helps with migraine (if caught in time!).
There is something called Number needed to treat (NNT) for drugs that is seldom used with patients, but I find it very helpful to explain why some do well on a drug and others don't.
NNT for amitriptyline is something like 4. That means that for every four people given the drug, only one person will have a benefit. But there is no way of knowing (mostly) of who that one person will be without trying the drug.
My son successfully takes amitriptyline. They weaned him off and tried duloxetine and that was a disaster so he happily went back on again. He was lucky, he was the one!
But you do have to give it a week or so to get settled with it. He already had fatigue, and it didn't make his fatigue any worse but it did help with the pain while trying to get to sleep.
that’s really interesting- I know 4 people been on it- only 1 still is. Pain is not my biggest issue- fatigue is. Will wait and see. 🤞
Many of us with RA and or fibro have huge issues with fatigue it’s one of my biggest issues. Do you sleep or do you work thro it. I try the work thro it system so I don’t feel I am asleep the whole day but…….
Hi K2013
Sorry to hear you are struggling. Unfortunately, I'm very intolerant of opiates and these types of meds, so I have had to try alternatives. I take biologics, prednisolone, and essential oil supplements, I also have 100mg of gabapentin at night and as well as blood pressure tablets. I hope you get sorted. Good luck
ive been on amiltriptiline ( 75m) and your body does get used to it and with the fibro and RA i get anything i can going, its a lot to deal with as if its not one thing its another, just because someone hasnt got on with it doesnt mean you wont, they will start you off on a small dose and then more if you need it. it will help you sleep
Fibromyalgia- confirmed 
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Diagnosed with Fibromyalgia today
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