Hartleyhare28 years ago

Going on it was horrid with stomach cramps and sick feeling so I imagine coming off would not be pleasant. I have been on it for two years so it is difficult to gauge how much effect it is having. I don't fancy stopping and starting again to find out!

I guess I put my trust in the hands of the health professionals that it relieves fibro muscle pain and the mood stabiliser for someone with a chronic illness is a bonus.

I don't feel any side effects but guess this is one for you and your GP to discuss, perhaps start on a really low dose? I am on one 60mg gastro resistant capsule in the morning but gradually upped it. I guess because I didn't even think about going back for more it must be of some benefit.

Best of luck and hope your situation improves soon.

Patrick

BlueMermaid38 years ago

Hello Sue

I started on this a couple of months ago but I just could not cope with the awful side effects I was getting and was advised by my GP to stop taking it.

I am wondering whether it might be worth talking to your GP about trying a different medication instead? Have you tried Amitryptyline?

Gentle hugs

Luxx

secondhandrose2 in reply to BlueMermaid38 years ago

No, I haven't tried Ami - when I spoke to my GP last she said Duloxetine is the only med for fibro - which I know to be rubbish as I belong to the local fibro support group and people there are on various different meds including Ami. I will discuss with her when I next see GP. Do you find Ami helpful, are there any nasty side effects?

Thanks for hugs and reply.

Sue x

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BlueMermaid3 in reply to secondhandrose28 years ago

Hi Sue

I've had Fibro for over 30 years and can only speak from my own experience and give my own opinion as I'm not a doctor.

To my knowledge Duloxetine is an antidepressant. If I am wrong, please someone do correct me.

Amitryptyline is also an antidepressant at a certain dosage. Please note the "at a certain dosage". However, it also works extremely well for some people who have Fibro because it can help very well for sleep and pain relief.

Yes, I have tried it and no, I didn't get any side effects at all.

I am on a lot of medication and didn't feel the Ami was actually doing anything at all, so I discussed it with my GP and came off it. I am on an older type of antidepressant.

I would definitely recommend that you discuss Ami with your GP. I know many people that take it with great results although I do believe weight gain MAY be one side effect. Again not certain.

If you are prescribed it, pm me and I will give you a tip about taking it.

If I tell you now you'll probably forget if you're anything like me and then not be able to find this post.

The question really is do you want/need an antidepressant or pain relief as there are many other meds for both.

Does that help any?

Lu xx

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Maladjusted8 years ago

I have been taking it two years. Initially the side effects were bad - headaches, nausea, unable to sleep, but because it helped the pain in my legs I stuck it out. Now I have no side effects at all. I find it very effective to the extent that I am unable to have a lie in at the weekend. If I am more than 2 hours later than usual in taking it I can feel the nagging gnawing pain in my legs starting off, so have to get up and go get my medication. On day I forgot to take it before going out, I was in pain all day, so now I make sure I keep a spare dose in my handbag.

We are all different, what works for one person may cause problems for another. I know many people on here take Pregabalin, but that is something that I had too many side effects with, so I'd recommend having a chat with your doctor first, so that you make the decision that is right for you.

God luck

Em x

secondhandrose2 in reply to Maladjusted8 years ago

Thanks Em,

As I have said in other replies my GP said only Duloxetine for fibro and I know that's not true as other people take other meds including Pregabilin. I will talk with GP about poss taking that. It's amazing how quickly the effects wear off, I will google it to see for myself.

Thanks. xx

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Maladjusted in reply to secondhandrose28 years ago

To my knowledge there are no specific drugs solely prescribed for Fibro as yet, though there are a number of drugs which are successfully used.

I stick with Duloxetine because it works for me, and has less side effects than other things I've tried.

I hope you find something that is right for you.

Em x

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TheAuthor8 years ago

I have never used this medication but I want to genuinely and sincerely wish you all the best of luck whether or not you decide to use it again.

All my hopes and dreams for you

Ken

Hidden8 years ago

I have been on 60mg for over a year. Still had terrible pains in my neck and shoulders and tingling down arms so discussed with doc to up the dose to 90mg and then to the highest 120mg (ie 2x60mg /day) worst mistake ever. shoulder pain turned into chest pain and I could hardly function with brain fog. Another doc said to reduce it back to 60mg which I did in one go. Big mistake! Very frightening withdrawal symptoms like brain inside feeling it was in a vice and was left three steps behind me when I walked forward. Back to 60mg in the morning after a week of hell and back to square one. Still have pains in neck and shoulders and migraines most days but brain now moves with me which is a good thing.

In saying all of the above Duloxetine has been the best med for me rather than taking gabapentin, anti depressant and pain meds. It takes the edge off of nerve pain itself and has helped with anxiety symptoms no end. Pain is still an issue but supplement with anything from Paracetamol to Tramadol depending on what I need. Just be very careful with Duloxetine when altering dosage. If it wasn't for reading other people's experiences on line at the time I was suffering withdrawal symptoms I would have gone straight to a & e!!!

Good luck with finding what's right for you 😊

secondhandrose2 in reply to Hidden8 years ago

Your experience sounds horrendous! I avoid any meds as much as possible and particularly would not take a high dose of anything because of the potential for long term problems including kidney and liver damage which many meds do harm but which only shows after time...

The reducing sounds awful, I would only ever change meds slowly unless life threatening effects! Weaning slowly is always less problematic but I am glad things have settled down for you now. It's interesting you find Duloxetine better than Gab, anti-deps and painkillers as latest research is that taking painkillers alongside anti-deps increases the risk of stroke and I would want to avoid that possibility at all costs!

I was only on 20mg and had no side effects or problems when I first went on that once a day so will consider going back on that. Thanks.

Sue

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secondhandrose28 years ago

Thanks for the replies. I think the most important thing seems to be start on the lowest dose and only increase very gradually if necessary which is what I would do with any med. I'll do some more research and think about whether to go back onto 20mg once daily. Suex

Hidden8 years ago

Hi Sue

Below is where I initially found out about Duloxotine. It was not a drug my Doctor commonly prescribed but was willing to give me it due to its benefits in helping nerve pain in diabetics. As I have mentioned in another post I have found Dr Edelbergs advice helpful albeit the title of his book a little misleading as I was hopeful of being cured!! His advice was more comprehensive than that given to me by our local Pain clinic who I believe try very hard through their constraints of funding.

shop.wholehealthchicago.com...

I too try to minimise the drugs I take due to sensitive Liver Functions. Dr. Edelbrgs book suggests the usual Vit D, Epsom Salts Baths, Cod Liver Oil, Vit E etc which I also take.

The news article that has scared me the most is the info being released that long term use of antidepressants/pain release are linked to Alzheimers. With a foggy brain at the best of time I do worry at the thought of my memory getting any worse!

Good luck with your meds. I am sure you will find the best combination for you. Jacqueline x

secondhandrose28 years ago

Hi Jacqueline,

I will read the link, many thanks.

Yes i know, the info about Alzheimers is scary too... It's always trying to balance doing good and doing harm, easing pain now in order to live a full life and shortening life or the ability to live it well at a later stage. Some days I think I will manage without meds but then the pain hits and seems to go on and on, in different parts of the body, so then I become depressed and feel I will have to take meds... and so on... it's very circular with me. I really don't want to take anything at all but I rationalise by saying to myself that as I am already 65 it's probably sensible to get on with living now because I could die tomorrow of something elee I don't even realise I have... Well, I'm sure you get the gist of what I am meaning.

Thanks again,

Sue

PS I mistakenly printed out that link in order to be able to read it at leasure and it's coming out in tiny print and goes on forever - about 20 pages I think... I'll need new glasses to read it!

secondhandrose2 in reply to secondhandrose28 years ago

Hi again Jacqueline,

I read the link and have ordered the book so thank you, so thank you! I was pleased as a lot of what I read confirmed thoughts I already had because my history confirmed some of his ideas about trauma and an overwhelmed fight/flight response. I'm a psychologist by training so had given that deep thought and written about them in essays some years ago, and it was when I took my thoughts and a record of my symptoms to the rheumatologist that I was diagnosed with fibro . He said my history was very typical for the diagnosis but I doubt whether I would otherwise have been diagnosed. My GP knows relatively little about fibro and still thinks the only medication for it is Duloxetine, also that the only thing the local Pain Clinic can do is prescribe meds which she can do although actually they educate and offer experience of yoga, warm water swimming, CBT and a variety of other approaches so patients can find what is best for them and that is definitely not what most GPs are able to offer.

I had a breakdown as a child (overwhelmed by distress which I coped with alone for a three year period) and re-experiencing the trauma during therapy resulted in my feeling similarly overwhelmed interestingly for a similar period until I was able to resolve the feelings by sharing them with a therapist. As a result I felt my immune system had been compromised and I am lucky enough to have professional friends who not only believe my symptoms but share my understanding of their cause which is an enormous source of validation and reassurance. I think understanding the cause accounts for the fact that my symptoms are not as extreme as those of many people with fibro and that I manage to cope better with them even when I'm not on meds - I have an understanding of their meaning to help me to cope with and reduce my stress response to the pain. Being able to understand what is happening to our body is I think the key to reducing levels of pain because much of our perception of pain is due to what we perceive as the cause, whether that provokes anxiety in us (i.e. could it be something really serious...) which further increases tension, stress and pain, and also whether we expect the solution to our pain to come mainly from others or mainly from within our body, albeit helped by medication. Does that make sense to you - I don't mean fibro is in the mind, but do mean that the more we are able to make decisions about why we are in pain and how to deal with it the more we are able to reduce by control the amount of pain we feel.

Phew... this is all a bit much, thinking this late at night. I enjoy thinking and expressing my ideas but I'm tired now and off to bed, hopefully to sleep!

Suex

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LaurieLee8 years ago

Hi, sorry sorry you are having such a bad time. Into had problems years ago when Inwas put on it and had to come off it as I found out accidentally that it had dramatically increased my blood pressure, so had to come off it immediately and it was horrendous. HOWEVER, after a few years, I tried it again, but insisted that I went back on AT MY OWN PACE, VERY, VERY GRADUALLY. I did this, with my GP over a period of 3-4 months until I got to 60mg, the dosage that helps fibromyalgia. I started at the lowest dose, until I got used to it, then I increased it by next dosage at the lowest I could go up again, which is why it took so long. That way, side effects were very little. It also helps with depression. I truly hope that this helps you. Wishing you all the best and Good Luck.

LaurieLee

secondhandrose28 years ago

Thanks for sharing your experience, oh I didn't realise it had been out for so long! Yes, I would only ever start with a low dose and after such a bad night in pain all last night I have decided to contact my GP for a prescription - I three the last lot in the bin as after reading how hard it was to wean off and a court case in US I decided never again... but needs must.

Thanks again,

Sue