Myalgia, amitriptyline and alternatives

Jenny TipsforME

Jenny TipsforME

Senior Member (Voting Rights)
Ive started to get all over muscle pain back again and bad headaches. This is frustrating as I used to get this a lot (even when relatively mild) but it had more or less gone. It is bad enough to disturb my sleep.:(

In the past I used to take amitriptyline to help regulate my body clock. If you haven’t heard of amitriptyline, it was developed as an antidepressant, though it’s actually not very good at that. But the sleepiness it causes is a useful alternative to sleeping pills and it can relieve pain. I think it used to help me generally at a children’s dose, but I developed a side effect of needing to wee a lot in the night, defeating the point so I stopped taking it years ago.

I was intending to ask about going back on it and trying again, for both pain and sleep, but I checked on drugs.com and my current drug combo (ivabradine, florinef, bisoprolol) has major interactions with amitriptyline and similar.

What do you do for all over ME pain? Paracetamol and ibuprofen don’t seem to touch it. I don’t really want to get into potentially addictive opioid painkillers. Suggestions which are realistic on the NHS please!
 
Jenny TipsforME said:
Ive started to get all over muscle pain back again and bad headaches. This is frustrating as I used to get this a lot (even when relatively mild) but it had more or less gone. It is bad enough to disturb my sleep.:(

In the past I used to take amitriptyline to help regulate my body clock. If you haven’t heard of amitriptyline, it was developed as an antidepressant, though it’s actually not very good at that. But the sleepiness it causes is a useful alternative to sleeping pills and it can relieve pain. I think it used to help me generally at a children’s dose, but I developed a side effect of needing to wee a lot in the night, defeating the point so I stopped taking it years ago.

I was intending to ask about going back on it and trying again, for both pain and sleep, but I checked on drugs.com and my current drug combo (ivabradine, florinef, bisoprolol) has major interactions with amitriptyline and similar.

What do you do for all over ME pain? Paracetamol and ibuprofen don’t seem to touch it. I don’t really want to get into potentially addictive opioid painkillers. Suggestions which are realistic on the NHS please!
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Hello!

Is there a published list of drugs the NHS approves? In the US, a doctor can only write an Rx for an FDA approved drug. If it’s repurposed (off label) then health insurance won’t pay for it.

It’s hard for me to make a suggestion, because I don’t know what’s causing your pain. I no longer take pain meds, but at one time I took oral prednisone, which helped a lot. I also had pain patches, Lidocaine, for 10/10 pain. I tried Fentanyl patches, but they didn’t work.

I also used to ice my back, shoulders, neck about 15 times a day.

At one time, my headaches were bad migraines, with both the pain and hallucinating colors. I opted for ongoing Botox treatments, which took care of my issues.

I primary just take hormones now, with a few supplements (NAD, NAC), and B12 injections.
 
@Jenny TipsforME I'm so sorry to hear that your pain is so bad. Have you ever tried muscle relaxants? I know that people have had luck with Flexeril.

Are your headaches actually migraines? If so, there are drugs to help. Could they be a horrible nuisance that we never get warned about, called Medication Overuse Headaches? It sounds like people intentionally do this to themselves, from that name, but that's not the case.

It's easy to do:
"The official definition requires three months of head pain at least as often as not, with 15 doses a month of ordinary painkillers like aspirin, paracetamol, or ibuprofen; 10 doses a month of triptans, opiates, or combination drugs (e.g. paracetamol and codeine).

The surprising thing is that you only have to take paracetamol once every other day, or a triptan every third day, to get medication overuse headache, if you also have migraine.

Pattern of use is important. Short term high usage can be OK; the steady drip drip drip of painkillers or triptans over many months is not."

Taken from here: http://www.nationalmigrainecentre.o...adache-factsheets/medication-overuse-headche/

This applies to migraine sufferers. As far as I know, regular people don't get Medication Overuse Headaches.

It's well worth pushing to see a neurologist for persistent head pain. GPs don't have the experience to diagnose unusual presentations of migraine and manage medications adequately.
 
MErmaid said:
Is there a published list of drugs the NHS approves?
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As you’ve probably heard ;) the specific ME NICE guidelines are currently in bad shape they suggest relaxation techniques or
Pharmacological interventions for symptom control
1.6.3.1If chronic pain is a predominant feature, healthcare professionals should consider referral to a painmanagement clinic.

1.6.3.2Prescribing of low-dose tricyclic antidepressants, specifically amitriptyline, should be considered for people with CFS/ME who have poor sleep or pain.
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The pain management clinic here basically overlaps with the CFS Centre so likely CBT type stuff.

I do actually find relaxation techniques can help some pain, but it’s not doing anything for this type. Tricyclics are what I can’t take.

It’s not easy to find a list of what’s generally possible on the NHS. Gabapentin looks like an option https://www.nhs.uk/Livewell/Pain/Pages/Whichpainkiller.aspx
 
What about nortriptyline? Does that have the same interactions?

Antiepileptics work for some. Topical magnesium (magnesium malate is supposed to be good for pain) is supposed to help, including Epsom salt baths.

The ME/CFS Primer says:
Duloxetine
Milnacipran
Tricyclics
Tramadol

There's also LDN (off-label only), which Dickson Pharmacy can provide for about £35pcm. There have been some small studies for FM and chronic pain, but nothing major.
 
Squeezy said:
Have you ever tried muscle relaxants? I know that people have had luck with Flexeril.
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No I haven’t could be worth a go
Squeezy said:
Are your headaches actually migraines
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No. I do get migraines and this is different
Squeezy said:
called Medication Overuse Headaches?
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It could be, though I try to be cautious about taking painkillers. Though could be taking painkillers for muscle pain is causing headaches too. But I’m not constantly taking paracetamol or ibuprofen because it makes such little difference it’s not really worth bothering :(
 
Jenny TipsforME said:
As you’ve probably heard ;) the specific ME NICE guidelines are currently in bad shape they suggest relaxation techniques or


The pain management clinic here basically overlaps with the CFS Centre so likely CBT type stuff.

I do actually find relaxation techniques can help some pain, but it’s not doing anything for this type. Tricyclics are what I can’t take.

It’s not easy to find a list of what’s generally possible on the NHS. Gabapentin looks like an option https://www.nhs.uk/Livewell/Pain/Pages/Whichpainkiller.aspx
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Actually I tend to ignore the U.K. politics. We have our own issues here in the US that I focus my attention on.

I tried Gabapentin, but it was not useful.

I hope you can get some relief.
 
Have you ever had your vitamin D level measured? Do you know if it is optimal? I found that improving my vitamin D level up to optimal (100 - 150 nmol/L or 40 - 60 ng/mL) had an impressive effect on reducing muscle pain. If your doctor won't test it for you, you can get it tested privately through the post - it currently costs £28 or £29 :

https://betteryou.com/vitamin-d-testing-service

http://www.vitamindtest.org.uk/
 
Arnie Pye said:
Have you ever had your vitamin D level measured?
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This could well be it actually. I’m having blood tests next week so I’ll ask to have it added in.

I’ve only had D checked once. It was September, I was really tanned from being in the sun, and I was taking vitamin D in a supplement. The result was still low!

Could also be why I’ve sometimes got this pain under control. That’s what’s frustrating me as I did think this was a past issue and couldn’t work out why it’s got so bad again.
 
Oh, @adambeyoncelowe reminded me! Magnesium definitely helps with muscle pain and headaches! My neurologist recommended I take Magnesium Malate or Glycinate (never Citrate, that's rubbish), for my migraines, headaches, fibromyalgia and ME pain.

Backed by lots of research. And def helps. I take 1000mg daily.
 
Squeezy said:
Magnesium definitely helps with muscle pain and headaches!
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Some people find that they can't tolerate vitamin D supplements. It turns out that low magnesium can cause this. If people improve their magnesium levels they can eventually tolerate vitamin D supplements. Unfortunately the standard magnesium blood test is not very reliable. The body keeps magnesium in the blood at a good level, if at all possible. If the level drops it "sucks out" magnesium from other body tissues in order to keep blood levels good. So according to a blood test magnesium can look fine but it can be seriously deficient in the rest of the body's tissues.
 
Jenny TipsforME said:
I had a weird thing with magnesium that it possibly increases my pain (0.82 correlation, though more likely I took it as if it was a painkiller so a correlation not causation issue). https://tipsforme.wordpress.com/2015/06/17/Mendus
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If you soak in Epsom Salts that will improve your magnesium levels. Another option is magnesium oil which is sprayed on the skin - it can be bought ready made or it can be made at home very cheaply. Perhaps when you have taken magnesium supplements in the past you have taken one that didn't suit you or it contained excipients that caused you a problem.

If you google "best and worst forms of magnesium" you'll find supplements aren't all the same in terms of other effects they cause and how well they can be absorbed.
 
Just weighing in on vitamin D:

My whole family had low vitamin D (we're a dark-skinned bunch; my granddad is from St. Kitts/Caribbean). My mum (much darker than I am) experienced significant pain relief from upping hers. My level was 30.9, and now is over 120, but despite a reduction in shin pain, the rest of my pain (mostly in muscles and joints) has remained.

Magnesium helps, although it's possible I've now overdone it. When I did my hair-sample intolerance test, they also pointed out potentially problematic metals, and magnesium was a yellow (rather than red or green), meaning it's possibly too high now. But I think that's because I've been taking twice-daily Epsom salt baths, plus daily magnesium citrate supplements, plus the magnesium stearate used as a filler in supplements.

I'm taking a break from magnesium, and then I'm swapping my magnesium citrate for magnesium malate when I start again, since I have apparently less than 15% of the optimal malic acid levels too (this has been linked to FM). I'm also going to buy some Himalayan pink salt for my baths instead, so I can access some of the other nutrients for a while.

Bulk powders are probably best if you supplement, since they skip the fillers.
 
Yes it might have been additives rather than the magnesium itself. Epsom salt baths have helped in the past (though I’m cautious about hot baths because of POTS). It was Himalayan pink salts I used the other day.

I’m going to try out the magnesium and vitamin D route first. Best to avoid extra drugs if possible. Then if that doesn’t work, I’ll investigate suggested drugs in this order:

LDN looks ok re interactions, and low on side effects. The relevance to inflammation and immune issues does intrigue me. What I’m experiencing feels like general inflammation. Don’t expect to get it on NHS. Would you tell your NHS GP you’re thinking of getting it through Dickson’s or just go ahead and get it?!

Duloxetine is fine re interactions and sounds relevant re muscle pain. Has anyone here tried that class of antidepressants (SNRI)? Is it likely to destabilise my mental health?

Milnacipran sounds interesting because it’s used specifically for fibromyalgia but sounds like it can increase POTS style symptoms (up heart rate, feeling faint)

Flexeril isn’t bad re interaction, may lower blood pressure. It sounds like drowsiness is a frequent problem.

Gabapentin doesn’t have any interactions with my prescriptions, but also looks like it’s effective for nerve pain, which doesn’t feel like my current problem. Also sounds like it can make you really groggy which isn’t what I need on top of the fog!

Tramadol is ok re interactions, but I’m not keen on the addiction potential of it (and doubt my GP would be up for it). A last resort I think.

Thanks for your help everyone :)
 
I have surprised myself by being able to tolerate Neurontin/Gabapentin for no-longer-manageable all-over-body joint pain. I can't take anti-cholinergics so amitryp, Cymbalta and all that lot are completely out for me.

I was concerned about side effects especially because I have significant OI as part of severe ME (but am not on drugs for it, long story) and one of the big side effects of Neurontin can be dizziness. I think you're in a bit of a similar situation.

I have crept up incredibly slowly, as in, I started on 100mg at night every second night, building up to three doses of 100 per day and I have gone up by 100 at intervals of 10 days -3 weeks, in the beginning introducing the extra dose every second day. Now, this did mean I had/have undermanaged pain, but for me, once I tip over into side effects, I have to stop the drug and the side effect(s) can mess up my system for a year or more.

Twice after increasing dose I got a bit staggery, very briefly. Once I really felt room-spinning, holding on to the walls staggery. It passed. But it made me think I was right to be crawling up dose-wise. I need to not poke my autonomic system. I have had no other side effects, and I'd barely count that one, it was so brief as to be negligible.

I am now up to 800, split into 3 doses, which is still a low dose, but I've been sitting on this one because I'm getting quite a bit of relief and want to see how I go. In theory you can go up to 3600 but I won't be going anywhere near there. I find that now I can sometimes get through a little flare with paracetomol and my usual extra rest and hot water bottles. Pain flares are much more manageable, as is my daily pain level. I expect I may go up a little more, but I would hope to stay at a low-ish dose.

My vitamin D levels are great. Hormones do affect my pain. Activity, including cognitive, affects it most.

I also found this guide by Natelson helpful: https://solvecfs.org/treatment-fyi-controlling-pain/

Hope this helps!

Edited to clarify that a side effect of Neurontin is dizziness. The way I wrote it had made it sound like OI or ME had a side effect of dizziness!
 
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PS When increasing night dose, I'd sometimes get a great night's sleep. Didn't last, though. It is supposed to improve the depth of your sleep. No obvious benefit for me except immediately after increasing the first few times. You mentioned grogginess. I think I could only claim this the morning after the very first dose, which I took before bed. And it was pleasant oh-my-God-I slept-so-well grogginess. But I'd say I would have been almost comatose had I increased the way the patient information leaflet or even the MEA leaflet suggests.
 
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