Medication advice: This is my first... - Fibromyalgia Acti...

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Medication advice

DivingBell profile image
20 Replies

This is my first post here (34 F)

My doctor diagnosed me with fibro a few months ago and I have a long history of anxiety/depression/IBS.

I work 29 hours a week (pretty physical work, heavy lifting, standing all day) and I am really not coping. My body is so sore and stiff all the time. I have no energy to do anything after work or on my days off and I have a lot of sick days. My doctor doesn’t want to book me off work but I don’t know how long I can carry on like this.

I have been taking amytriptiline 50mg but don’t feel it helps any.

Doc wants me to try Duloxetine but I’m scared. The last two times I took an SSRI (for depression/anxiety) I was off work for a month each time and had bad GI side effects and crippling anxiety. It eventually levelled out, but I don’t know if I can cope with it again without knowing if its even going to help.

Does anyone else have experience with the side effects of Duloxetine? Did it help with pain? Thanks.

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DivingBell
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20 Replies
Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org

I do not have personal experience of using duloxetine, so cannot comment on that aspect.

Dinkie profile image
Dinkie

Hi and welcome. Can’t help regarding medication but I’m sure others will post who can assist- there were a couple of posts a few days ago about it.

Have you had an occupational health assessment? I fought against having one but have to say it was a positive experience for me. The recommendations made assessor were implemented without trouble. I have a designated parking space close to the door, later start times, more breaks (I don’t take these as I would seize up completely). Different uniform so that I can dress myself! New chair and lighting. My life is much easier now and I know that had they not been implemented 4 years ago I would not be working now.

DivingBell profile image
DivingBell in reply to Dinkie

Thanks for the advice. My employer is quite hostile and not very accommodating so I don’t think this is a route I can take.

My Doctor said she could write a note stating that I am fit for work if certain conditions are met, but I am certain my employer would use that to argue I can’t physically do my job anymore. I am looking for something else less physically demanding but it’s not a good time to be looking for work. Fingers crossed.

Dinkie profile image
Dinkie in reply to DivingBell

Your employer is leaving himself/ herself open to constructive dismissal claim. Fibro comes under the equality act 2010. He/she would be very foolish indeed to ignore the Occupational Health route. Have just completed legal action for husband as employers failed to acknowledge his needs. All I will say is it cost them dearly.

DivingBell profile image
DivingBell in reply to Dinkie

It's my understanding that you can only file for constructive dismissal after working for the company for 2 years or more. I worked there for 3 years, left for 6 months and got my job back in 2019. Since that 6 month break I've only been there for a year so I don't think I could claim constructive dissmissal.

Dinkie profile image
Dinkie in reply to DivingBell

Did you end employment and receive your P45. Worth a call to ACAS in any event as it won’t xost you to check it out.

DivingBell profile image
DivingBell in reply to Dinkie

Yup, I left the country too. I'll consider calling ACAS, thanks for the advice. x

Maladjusted profile image
Maladjusted

I have been taking Duloxetine for 7 years now. I do recall that when I first began taking it, I had a few side effects, mostly dizzy spells and nausea, but that stopped within a few weeks. The only side effect that I have now is that I must take it in the morning, because if I take it after mid day I am unable to sleep at night.

For me, it does help with the neurological pain I get in my thighs. As I am now over 65, I was hoping to have stopped taking it, or at least lowered the dose by now, but without it the pain is unbearable and I'm unable to walk. Apparently side effects can be more pronounced over 65, but I am not aware of any side effects nowadays, so I prefer the Duloxetine to the pain.

Inthesticks profile image
Inthesticks

Hi, I've been on Duloxetine for nearly 2 years now since it came off licence and could be prescribed by my GP. It has helped me so much. It is actually an SNRI and works differently to SSRI's. I was on Citalopram (SSRI) for years and it didn't help much at all, but changing over to Duloxetine made a huge difference to my pain levels and my mood. I can't praise it enough, it has revolutionised my life with Fibro. Don't expect massive changes all at once , it gradually builds up so be patient and you won't regret it. I take 60mg twice daily which is recommended for Fibro by my health authority, for all other conditions it is 1 daily. Make sure it's prescribed 2 times daily or you won't get any benefit.

DivingBell profile image
DivingBell in reply to Inthesticks

Thank you, this gives me hope. I think I will try it.

Tootiepie profile image
Tootiepie

Hello DivingBell, I am SO SORRY to hear that you are not getting the full support from your Dr. Somehow many Drs seem to think that anti depressant can cure all !

It is extremely difficult if not impossible sometimes to cope with never ending pain and the stresses both mental and physical of work.

I have heard both good and bad reports about Duloxatine. Currently the company who manufacture them are currently being sued in a law suit in America. This is from people who suffered from side effects and more prominently withdrawal side effects.

I have mentioned on this site before that I myself had a terrible experience on Duloxatine, BUT this was counteracted by many people who have had no side effects and DO benefit from the pain relief that they experience while being on them.

My only advice would be to take it slowly - try a very low dose first then gradually increase. I am NOT a Dr and so my advice is based purely on experience. I would listen to your Dr but if you have any concerns while you are on them you must not just come off them straight away - talk with your Dr and come off them gradually.

No medication can guarantee that it works for everyone and sadly for us all it is trial and error. Managing the error’s correctly by involving your Dr at every stage is the best way to go. If you don’t try you will never know. Good luck. X

DivingBell profile image
DivingBell in reply to Tootiepie

Thanks for the input <3 My doctor is mostly good, but it can be hard during this time as all my appointments are over the phone. I think I will give Duloxetine a try and see how it goes.

Sandy247 profile image
Sandy247

Hello DivingBell and welcome.

I used to take citalopram but my GP changed my prescription to Duloxetine because I built up a high tolerance to the citalopram and I had reached the maximum daily dosage also the effects had diminished so another drug was needed to replace it - Duloxetine was what my GP prescribed. Duloxetine works really well for me. I could actually feel my mood and pain change. I had and still have, no side effects. I am extremely lucky.

To give you an idea of how certain drugs affected me, you mentioned that you are currently taking amitriptyline 50mg. I was given the smallest dose you can take of amitriptyline and within 2 days I was found in a corner, rocking backwards and forwards and I could only see darkness - it was the worst and most frightening experience I have ever had with prescription drugs. So now there is a note in red on my file which states = No amitriptyline . It is amazing how we all react differently.

With regards to your unsymathetic boss, Dinkie is correct in everything she says. I had an occupational work place assessment [at my desk] and within days everything changed for the better and it made a huge difference to my work output. When you have your assment it may be reccommended that you do clerical work or have longer breaks. There are many and varied suggestions that can be recommended to make your life easier at work and your boss MUST implement them because the Occupational Health Therapist [OHT] will return to see that the changes have been implemented and you wil be asked to keep in contact with OHT. It may be that weeks/months/years after your first assessment you need to make further changes, again you contact the OHT and s/he will carry out another evaluation of your work place and the new needs you have. Do not be put off by an overbearing boss. This is the law and there is not a thing he an do about it.

If, at anytime, you feel overwhelmed, need some advice or just need to rant and get things off your chest we are here for you. Don't suffer in silence.

I hope this helps you and I wish you luck for the future.

DivingBell profile image
DivingBell in reply to Sandy247

Thanks so much for the input, I will look into it and try to work something out at work.

Mollycooper11 profile image
Mollycooper11

I've been on duloxetine for 12 years now so I can't remember what side effects I had but I do know I had to swap from a morning dose to evening. Sorry I know that's not much help.

Maud-ie profile image
Maud-ie

I stopped Duloxetine as it didn't work and now take Gabapentin. Not perfect but seems to fill the pain sometimes. I take 1200 mg a day. I have put on weight with it.

Maud-ie profile image
Maud-ie

Dull the pain not fill it!

JayCeon profile image
JayCeon

I wouldn't need duloxetine, but all pain killers I tried had tough side effects and amitriptyline only helped sleep but gave 7+ side effects, better 'clearer' sleep and less day-tiredness etc. now without. (Trying 5HTP in the evenings again tho.) Since finding many causes and remedies for my various pain I prefer not dulling it over, esp. now I've got it down, so I can target them better. And none (will) help with the ache and quick exhaustibility which remain as my main problems, at least if I work again... pain is something I've learned to cope with quite well without meds, had lots of it all my life.

Inthesticks profile image
Inthesticks

Hello DivingBell,

Firstly let me put your mind at rest, Duloxetine is NOT an SSRI. It is a SNRI, it is a Norepinephrine reuptake inhibitor. I am prescribed it for Fibromyalgia and take 60mg twice daily which is a high dose and only recommended for Fibro. For all other illnesses the normal dose is 60mg in the morning.

For Fibro it has been a miracle drug reducing my pain levels by around 75% and my Anxiety & Depression has virtually disappeared for the 1st time in over 40 years. Previously I was on Citalopram (SSRI) for many years, the beneficial effect being only mild. The only side effect for me has been drowsiness, which with a bit of will power I've been able to overcome. I have been taking it for 2 years now (since it came off licence and could at last be prescribed by GPs) and it is still as effective as when I started it.

It took about 3 weeks before I felt any real benefit, it can take up to 8 weeks. I continued taking it and my symptoms gradually got better and better. It is not a cure but it can make a big difference for the better.

Please try not to be afraid of it and give it a try, it could be the help you need, just as it is for me.

Inthesticks profile image
Inthesticks

Hi Scrumbler,

I take Duloxetine for Fibromyalgia and have 60mg in the morning and 60mg in the evening. This being double your dose might mean I had quicker results than you. I started to feel some benefit after 3 weeks which gradually increased over the next few months. I would say the full benefit has reduced my pain and neuropathy by approximately 75-80%. However 7 weeks does sound quite a long time to wait for any improvement. Personally I'd wait 8 weeks from being on the target dose, so another 5 weeks for you. If you still haven't had any relief by then I would recommend seeing your doctor.

I had a MRI of my back a couple of years ago and it showed several osteoarthritic nodes around my sacrum which could cause me problems later on and would require surgery. I now have tingling buttocks and backs of my legs plus Sciatica which I believe is not unlike Piriformis. Duloxetine has not been of help for this. Currently with Covid my GP is only available by phone requiring an appointment for a call back. So far I have been unable to get a call back as they are strictly rationed and thus unable to get a referral to an Orthopaedic surgeon to find out if I do in fact have Piriformis Syndrome.

I'm sorry this hasn't been a very positive reply for you, I can only give you my experience of the drug which has been fantastic for fibromyalgia, but on the face of it doesn't seem to be so helpful for you.

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