Just diagnosed

Hi everyone my name is Tracy,I was diagnosed yesterday by a Rheumatologist. Although upset I was also relieved as I was feeling like a crazy hypochondriac! Consultant told me to take Amitriptyline but I have restless legs and this drug is known to make it worse. What drugs,vitamins would anyone recommend to begin with. Thanks,appreciate any help at the moment.

22 Replies

  • Hi Tracey I was diagnosed with Fbro a couple of weeks ago I'm already on a lot of meds for arthritis. The rheumatologist prescribed me a tablet that people take who have Parkinson's it's called Ropinirole first week I took 0.5mg then went up to 1mg at first my restless legs felt worse but touch wood the past 2 nights they've not been to bad long may it continue. Good luck hope this helps hun don't ever give up. Jude

  • Hi Jude, I have been taking ropinerole for a year and take 2mg per day. Most days it works well, just unsure what fibro medication to take that won't set my legs off.

  • Hello Tracy. welcome to the site. Different drugs work differently on different poeple and I am afraid that there is no one size fits all, but with trial and error the symptoms can usualy be controled. I also have restless legs and take Amtitriptoline to aid pain and sleep. The RSL is controled with ropinerole. It may or may not suit you, have a word with your doctor and see what he thinks is best for you.

    Have you been onto our main web site yet? there is a lot of usefull information to be found there, just click on the yellow butterfly at the top of the page. then you can come back onto the forum later there is always some one who will help with questions listen when you need a good moan or share a joke and we are good at jokes and sillyness on here as well as helping each other out when needed. I`ll leave you to look around and see you later sue

  • Hi bvlgari

    Firstly, welcome to the site and I sincerely hope that you find it as useful as I do. I am so sorry to read that you have this horrid illness, and I hope that you can find some resolution and relief to your issues.

    I always say that we are unique individuals, and with this in mind, I would have to say that we all react differently to both our pain and our medication. As you read around the forum you will notice the difference of opinion that many members have to the same medications, so this will give you a good idea of what I mean.

    However, there is one recommendation that I will offer you, and this is relating to your Amytriptaline. If the dose goes up in stages and you find that the sedative qualities become too overwhelming; then there is a non-sedative version of this drug called Nortryptaline that you could discuss with your GP. Pain, restless leg and other bodily spasms can be treated with several other drugs including Pregabalin and Gabbapentin, so I would remember these for your next appointment in case you feel the need for more medication.

    There are very strong pain medications available but I have never taken any of these so you would have to ask around the forum for those who have. I was going to post you a link to FibroActions information, but the link (and the site) is temporarily down. It should be up and running again shortly.

    I sincerely look forward to bumping into you around the forum.

    Ken x

  • Website is back up again, sorry for any convenience caused

  • Nortryptaline? Never heard of this. My doctor said it was Amitriptyline or nothing. Thanks. I will talk to new doctor [mine retired - great shame, very good doctor]

  • Hi Sarah-Jane

    Just a quickie, there is also a liquid Nortryptaline that does not contain lactose. Another member who is a pharmacist posted this to me about three weeks ago. It is useful to know as many members are lactose intolerant. So I would recommend anyone having problems to discuss this with their GP's.

    Take care

    Ken x

  • hi welcome to out crazy warm understanding sight. due t the fact we all have different reactions or experience s but ever since I've taken them although make you a little sleepy I've not had one leg cramp well only a rare one but no restless legs yippee xx

  • I am taking Amitriptyline and don't have a problem with restless legs but the drug gives me a very dry mouth so I end up drinking gallons of tea every day. Not sure it's too efficient at removing fibro pain in my case but others may find it works better?

  • Hi bvlgari I think if you ask every one on this sight they will confirm that they were in the same position as you just before they got diagnosed. You get told for so long that there is nothing wrong with you that you end up believing it, even though, you know there is something wrong. (It doesn't help when you also find out that what you have been diagnosed with Fibro they do not know why you have it, how it started, or even how to treat it) Do not be surprised though, and I am not trying to depress you, that you will also have days when you feel like you are butting your head against a brick wall with the myriad of medication you will have to try to find the ones that suit you. Unfortunately for me I am not able to take any medication but I am sure you will get there and find what works for you. The best piece of advice I can give is to be as relaxed and open minded and not pin hopes on the miracle cure, unless you find it, and then you can pass it on please :o) Good Luck

  • could you pass it on to me as swell please then we can make a fortune between us, but everyone on the site will get it for free :D :D

  • Hi Tracy,

    I am also newly diagnosed but I was put on Pregabalin after taking Tramadol and co codomol. The Pregabalin is the only thing that has worked for me but as the others say, this is something to discuss with your GP. A word of advise, it is important to discuss the side effects of any of these with your GP as some make you sleepy and others have longer lasting side effects.

  • Hi, My name is Mandy, like you I was diagnosed about 3weeks ago. I felt the same, was always fit and healthy was at the gym 3-4times a week, last June I felt like I had been hit by a bus, been very very unwell since then. I woke up the next day after being diagnosed feeling, I now know why I'm feeling like this. I have been on Amitriptyline the last two weeks and it has helped along side co-codamol. I do hope you get sorted, but it's taking me a little time to get my head around it all, it's great to read other people's experience,s it gives me a little comfort. :)

  • Hello Mandy and welcome to the site. It looks like you have already found your way around. If you have any questions just ask. hugs sue xx

  • Hello Tracy,

    welcome to this site. Grab a cuppa, pull up an chair and make yourself at home. I think we all feel we are crazy until we get our diagnosis. I take amitriptyline for nerve pain which helps me but I have ropinerole for the RLS which has really helped until these last few weeks. Getting the right medication is often a trial and error process so hopefully you have a good GP who is committed to helping you.



  • Hello Bvlgavi,

    Welcome to the FibroAction Community Forum !

    Sorry to hear of your recent diagnosis but like you say you do feel like you need a name for the condition as the Doctors can make you feel like your imagining it when you know you're not!

    There are a few recommended medications for Fibro which you can read from the links given. As for Vitamins, I would consider discussing any vitamins suggested by others with your GP as they may interact with medication you may be taking already.

    Here is a couple of links from our FAQ section which you may find helpful;



    I wish you all the best and please do ask any questions you need to as we are happy to help if we can

    Emma :)

    FibroAction Administrator

  • Hi Tracy. I can't better any of that so Welcome indeed.

    The best we can do is tell you what works for us. Beware of taking this as medical advice - that's for you and your prescribing person. I hope your GP is as good as mine.

    Follow Emma's links and don't be timid to come on and have a rant, cry, ask a question or just be plain silly to take your mind off it for a bit. :D :D

  • Thank you all so much,although my family are great,they don't really understand and it's so nice just to be able to talk to people who know exactly how you feel.

  • Hello Bulgaria, welcome to the site, you,ve come to the best place for help, advice and laughter! I was diagnosed just over a year ago and it has taken me a long time to come to terms with this. I was previously fit and used the gym a lot. It,s a big change in lifestyle which takes time to assimilate, so do please be easy on yourself, take advice when you need it, and as the days go by you,ll get to understand how fibro affects you, because everyone is different . Then you can set about managing it. Good luck and keep in touch

  • Hi i have restless legs . Was told in April 2013 that i had firo. Eas given Amitripyline, it helped for a short time. However i was not feeling the benefit and i was constantly waking up.So now my sleep consultant put me on Pregablin. x

  • Hi and welcome. I take Lyrica and Amitriptyline but got restless legs after taking them. My doctor increased the doseage and its almost stopped provided I am wearing cotton pjs and not touching the sheets with bare skin. If you don't want to take it talk to you doctor. There are alternatives.Anyone who knows me on here knows that I always recommend you get Fibromyalgia for Dummies as it is very helpful, with medication, explaining things to people - some think we are just putting it on so we don't have to do the housework! I wish I had that choice. Anyway, do come on here and have a jolly good rant if you need to. We are here to support each other.

    Soft hugs

  • Hi, sorry, me again. I forgot to say I have Co-Dydramol which I take for any pain at any time. Like a top up. Two every four hours max. When I'm at my worst I take the max but I don't wake up for it, that would be too much. It solves my problem and doesn't make me addicted to it either. Also, if you are put on some of these drugs, unless you get bad side effects, try them for about a month before you give up. Get dosage checked before you change and DEFINITELY TALK TO YOUR DOCTOR BEFORE STOPPING! These meds can be quite nasty to you if you just drop them!

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