tremors?

[Vitb12___]

hi.. hope everyone is well and managing as best as possible.. I’m very new to this so pls bare with me.. I have been diagnosed Oct 2021 tried different meds with no luck. The last 2 weeks my arms and hands have started shaking, with the whole top of my body had a tremor.. it’s happening more and more now. Does this make s new to anyone at all?? Thanks xx

[misspicky82]

Hi Vitb12,

I am usually quite shaky especially more so in the mornings. I do tend to tremor also but I've never worked out why this happens. It gets worse at night and sometimes it wakes me up bcoz it's so violent at times. I thought it may be the meds I'm on. This is taken from information on NHS website about Amitriptyline about who should not take it:

# have epilepsy or are having electroconvulsive treatment (ECT) – amitriptyline may increase your risk of having a fit or seizure

Also, this is from NHS website about Duloxetine:

# have ever had a seizure or fit, manic episodes or bipolar disorder

I take both but I'm currently weaning off Duloxetine, I was on 120mg but now taking 60mg and will soon be off it completely as I'm going onto Venlafaxine instead as Duloxetine is not working for me.

I will see how if the tremors settle down after I stop taking it, but I've got to say, I have noticed I'm not having it as often as I was on 120mg. I strongly think it could be 1 or both of the above meds.

[Yoyo2024 in reply to misspicky82]

Hi misspicky82,

Have you noticed a difference with your tremors after stopping the duloxetine/amitriptyline combo? I’m currently on it and in a similar position to you at the time of your post - getting woken up by tremors and finding them worse at certain times of the day. I spoke to my primary care doctor who dismissed them as ‘normal’ for fibromyalgia?

[misspicky82 in reply to Yoyo2024]

Hey Yoyo,

I stopped taking the Duloxetine and I'm still on Amitriptyline at 10mg at night time. When I got put on the Venlafaxine the tremors were way worse, especially when they increased it from 75mg to 150mg. I'm now on Gabapentin and tremors have definitely settled down. I still get some now and then but nothing like I was doing. I always wonder why medications for epilepsy give you tremors though, it's very strange to me that they would do this 🤔 but yes, coming off that combo definitely helped me. I'm not doing too bad at the moment, the Gabapentin has actually been a lifesaver for me. It was a little rough to begin with but I'm doing OK now. I still have pain but I've finally got some relief from it. I'm only on the minimal dose of 300mg taken x3 a day, and I believe you can go up to 3600mg split into 3 doses a day but I'm happy to stay on what I'm on for a while. I also take Dihydrocodiene so that helps to amd maybe the fact I'm on that means I'm needing the higher dose of Gabapentin. My GP had reduced my Dihydrocodiene though and I'm currently on a plan to wean off them but for the last 6 months I have been refusing to lower anymore as I didn't want to reduce this as it was the only medication that was giving me any pain relief. But since I've been to the pain clinic, they were the ones that reviewed my medications and wrote to my GP to request I was prescribed Duloxetine, they also told me that the ratio of Morphine that my Dihydrocodiene works out at is very low so they don't have any issue with me being on this alongside the Gabapentin. I'm seeing my GP next week and this will be the 1st time I'm seeing him since I've been to the pain clinic so I'm not sure what his thoughts are on this but I will be asking them to stop the weaning off process and allow me to do this myself when I feel ready. The thing is, bcoz I'm in a taper, there is always an issue when I request my Dihydrocodiene so this needs to be taken off my records in order for me to have access to the amount I need. I told the pain clinic that I will reduce the Dihydrocodiene when I'm ready and not when I'm being forced and they agreed that is the only way it will work anyway as if a patient is not ready, they will simply fail the taper and then be in a position where I have none left and will then be going into withdrawal so I'm hoping I will be able to get all this sorted next week. I'm crapping myself a little though about my appointment as the letter that has gone to my GP states that I don't agree with his plan or the reason he believes my Fibro was triggered in the first place...oops 🙈 basically he wanted to treat my mental health first but I said that's not going to work as my mental health issues are due to the amount of pain I'm suffering from and if the pain was more settled, my mental health will naturally follow but he was on the path of thinking that my pain was caused by my mental health. I know myself more than any GP does and my point has been proven as I'm already feeling much better in myself bcoz I've finally had some more relief from my pain.

Sorry I went into a rant then! So just to confirm, yes my tremors did settle when I came off the Duloxetine and Amitriptyline combo xx

[misspicky82 in reply to misspicky82]

Sorry I meant to say the fact I'm on dihydrocodiene also means I'm NOT needing the higher dose of Gabapentin xx

[misspicky82 in reply to misspicky82]

Oh my God, I really should read my replies before I post..... the pain clinic prescribed the Gabapentin not Duloxetine 🙈🙈 I'm having brain fog today!! Sorry for the confusion xx

[Yoyo2024 in reply to misspicky82]

Hey no worries about the rant - feel free to message privately if you want?

Thanks, that’s really helpful to know as I’m not getting on with the duloxetine even after the dose increase last month. I was going to push for gaba but was worried my gp would say no as I think I read guidelines somewhere say it’s not good for fibro pain (could be imagining this though!). It is so weird that meds that are supposed to help epilepsy can make people have tremors.

I’m currently going through the pain clinic for the self management course starting in Jan 2025 so we’ll see how that goes! I’m sure your GP appt will go fine. At the end of the day you know yourself better than the docs do.

I have my appointment tomorrow morning which will be interesting because they dismissed my tremors completely and blamed it on my shoulder (different medical nightmare there!) even though it’s the wrong arm which ticked me off a bit. Pain has a massive impact on mental health so if the pain can be helped, it’s reasonable to assume mental health will improve too, right? Are we the only ones that think that without the 5-10 years of medical training GPs and specialists have? It boggles my brain but I go with it because my doctor sometimes forgets to take the bigger picture into account.