M.E./CFS and Fibromyalgia

Sparklefizz I have been taking 10mg of Amptriplyine twice a day for nerve pain since 1992 prescribed by Professor Marsden at the Neurological hospital in London. I am in constant pain in left arm and leg since 1988. Since being put on the Amptriplyine it's makes me able to tolerate the pain when I have a pain flare either in my arm or leg rarely both. But usually my left arm. I take an extra Amitriptyline at lunchtime until the pain goes back to its normal level. Then just take my normal dose .

I have been having pains in my legs and falling all my life. Since 1988 had limb jerks in all 4 of them. Never knew when they where going to happen. For 32 years I had them and 4 months of full blown seizures. But my brilliant new neurologist put me on Clonazepam 3 years ago this month and it was like a switch had been turned off not had a jerk or seizure since.

After he had my blood genetically tested finally found at last April what is wrong with me and I was born with hereditary Hyperplexia gene mutation SLC6A5 type 3. It's very rare. In 2020 also found out I was born with a hole in my heart I have paroxysmal atrial fibrillation. On medication for it. I am 64..

I have friend at my craft group who have fibromyalgia plus other illnesses ,another with fibromyalgia also has couple of discs in her back crumbling plus other illnesses. Plus another 2 have other things they all take Amptriplyine for nerve pain and like me find it helps a lot and none of us have had any side effects.

Hope this helps you feel confident about taking Amptriplyine.

Sparklefizz should also of said one has had ovarian cancer and fully recovered years ago and the one with disc problems has grade 2 breast cancer and about to have radiotherapy soon.

Sorry spelt Hyperekplexia wrong.

I have fibromyalgia and other heakth conditions but personally are not on Amptriplyne as that class of drugs unfortunately doesn't suit me. I do know several people who are on it who have found it a great help both for sleep and for pain. I really feel it is worth trying it as you can always stop it if it doesn't suit. Good luck with whatever you decide.

I take amitriptyline at 20mg a night

I take it about 4 hours before I want to sleep.

I'm generally quite sensitive to medication but it doesn't cause me any issues and makes a big difference to me in terms of pain and sleep.

I'm quite forgetful and sometimes forget to take it or renew the prescription and I seriously know it when it happens. Awful nights

Sparklefizz I took Amitriptyline as an anti depressant for 25 years at a much higher dose than you're given for pain - between 75 and 100mg daily. That is the effective dose for depression

I can honestly say that in terms of side effects even at that dosage I experienced it as very benign

So I'd give it a try. So many reports of it helping at low dose for pain, and 10 or 20mg a day IS low dose..

I've had ME for about 20 years, and have been taking amitriptyline for sleep for most of that time. I do find I don't sleep as well if I forget to take it. It really does seem to do what the doctor said it would, i.e. deepen my sleep. Apparently people with ME sleep at a much shallower level and don't benefit from the effects of deep sleep. I have never had any side effects from it, so would recommend trying it.

Thank you so much everyone for taking the trouble to reply. I really appreciate it.

Whiff I'm so sorry that you have been through so much, and that all of you are suffering in one way or another.

choughdancer My consultant said exactly the same as you - that it would deepen my sleep and give me more refreshing rest.

I'm a bit concerned that it will make me gain weight as I gained 2 stone with taking Tamoxifen years ago, and then developed an under-active thyroid and have never been able to lose that weight. I haven't been able to do much exercise since collapsing with M.E. as my energy levels are poor.

As some of you have said, I can always stop it if I find it doesn't help.

Sparklefizz I have pretty bad CFS and am on a number of weight gain drugs and can't do the exercise I used to -I do diet very strictly...but I think 10mg is pretty marginal weight gain wise, perhaps others can share on that?

Sparklefizz Amptriplyine won't make you put on weight. I have lost 7st since 2017 through dieting and sit fit class. Been trying to lose the last stone and a bit for 2 years but that's because if I eat to many calories I put weight on. Or like the last 7 weeks stayed the same weight . Was over 19st size 32 now just over 12st size 16 .
My mom took Tamoxifen after her first mastectomy for 5 years she didn't put weight on.

Tablets effect people in different ways. Amitriptyline is an anti depressant in high doses but low doses like I take and my friends take the same dosage is for nerve pain. Like a lot of medication they have been found to help various conditions in different doses.

I have taken it for years with no bad side effects. In fact it helps me sleep . When I had a frozen shoulder the GP told me to double the doze at night to get a good night's sleep .

My daughter has fibromyalgia and takes large doses of Amitriptylline with no ill-effect s although other drugs have caused weight gain.

I take it for nerve pain in my arm, only 10mg about 8pm and it does relieve the pain and I sleep better. There is no harm in trying it. If it does cause problems, then different drugs can be prescribed. I have a friend who takes 20mg daily for anxiety. It is a very useful drug and certainly helps a lot of people.

I take dosulepin which is a sister drug - I take it for pain (I have lots, as many of us do at this stage of life), for migraine prevention, and for mild depression (mostly caused by pain and migraine!).

It is a successful treatment for me - I sleep well, my pain is reduced and it is a very long time since I have had a migraine, so I am now happy to continue with it. Sometimes I think I wish I could stop it and try a dose reduction, but the problems come back, so it makes sense to keep going with it, as it improves my quality of life a great deal.

Thanks everyone for all your posts. It's so much more helpful to get advice and tips from people who are actually going through the same thing or using a medication themselves.

Wishing all of you as good a day as possible.

I take 50mg a night and I don't think it has affected my weight. At various times over the years of taking it I have lost and gained weight, but only due to what I ate and how much exercise I took!

I take 35mg morning and night for fibro/nerve pain. It helps with sleep. No effect on my weight.

Hello Sparklefizz, I have been taking Amitriptyline for Fibromyalgia pain for a long time. I now take 50 mg per night. It helps with sleep although I still wake up at least 3 times every night but that doesn't worry me. I usually get back to sleep reasonably quickly.
I was concerned how the drug would affect me so I started on a low dose and gradually increased it .
Good luck whatever you choose to do.,

Thank you labradorlinda33, Baggs and chough

Interesting article in The Times.

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