Myalgia, amitriptyline and alternatives

@Evergreen thanks. From that Natelson guide

Cymbalta (duloxetine) and Savella (milnacipran): These drugs have been FDA approved for widespread pain (Cymbalta was also approved for depression). “I use these instead of TCAs when the patient has drug coverage because they produce fewer side effects. Cymbalta is especially useful when mood disorder is also present. For Cymbalta, start with 30 mg per day and then, several days later, increase to 60 mg,” counsels Natelson. For Savella, Dr Natelson recommends that you ask your doctor for a drug starter pack which gradually builds up to the full dose of 50 mg twice a day in order to bypass side effects.
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So they have fewer side effects :thumbup:
 
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Something I found in my googling is this NHS cost comparison of different drugs. It’s a roundabout way to see if drugs are approved and whether they’re likely to be iffy to do with cost (rather than relevance or safety which is a separate issue)

http://gmmmg.nhs.uk/docs/cost_comparison_charts.pdf
 
Jenny TipsforME said:
@Evergreen thanks. From that Natelson guide



So they have fewer side effects :thumbup:
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It's a helpful guide, right? I've never tried amitriptyline, but I had bad side effects when put on low dose Effexor and then low dose Cymbalta (not for any psych issue, or for pain, I didn't have any at the time, just inappropriately for ME). New insomnia, wired, anxious and GI horrors, as well as much worse dry mouth and eyes. Seemed to totally dysregulate me autonomically. You could be totally different. I just know not to go near anti-cholinergics. I now get a bracelet in hospital so folks know not to slip any into me.

Really sorry you're having so much trouble with pain again. It's so miserable when you can't get proper relief. Hopefully you will find a drug or drug combo soon that will give you relief and that you can tolerate. Or if vitamin D helps, fantastic. Crossing fingers for you.

Edited to include the empathy I meant to include in my first message!
 
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I would try Flexeril before trying the SSRI medications. Taken at night, the drowsiness is useful with getting a good night's sleep!

I researched Cymbalta and Savella thoroughly for my daughter who has fibromyalgia, and we decided the only 50% success rate, and bad side effect profile wasn't worth it. Deciding to take SSRI drugs is a serious decision. They alter your brain chemistry so that coming off them can be very hard. Its called, "Discontinuation Syndrome".

So, you asked if anyone had taken an SNRI? I've been on Effexor for 11 years, pre ME and fibro, for depression and it's fab for that. Side effects are not fun. Weight gain of 3 and a half stone! I only lost it when I was prescribed Topomax for my migraines, (which got rid of my fibro and ME pain, but also my memory and brain power).

It is one of the worst to get off - for a situation as bad as my depression, I still feel the risk was worth the side effects and future problems.

I don't think Duloxetine is quite as bad...
 
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I have pain quite a bit. Paracetamol and even those great big pink ibobruphen horse pills do nothing. The onay thing that worked when nothing else did was naproxen. My pain is mainly in hip and knee joints so when flared I make things worse by positioning and walking oddly which seems to throw out my back. My GP prescribed it for a couple of weeks and this was enough to allow me to sleep and rest without making it worse. I’m not sure you can take it for a long time but it might help if you are in a pickle?
 
Jenny TipsforME said:
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?!
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Vitamin D supposedly helps LDN. As does clemastine fumarate.

Since no one replied to this, I'll share my experiences. I went ahead and got LDN, and then told my GP. They added it to my list of medications so they could monitor me if needed (they haven't ever needed to). They even asked the local hospital if I could get it prescribed on the NHS, but they said no.

I've found the docs I've met are quite understanding about these things. I suppose they're aware of the politics/limitations involved in the NHS.
 
@arewenearlythereyet I also had horrendous side effects with carbamazepine. Dizzy, vomiting, crawling as I couldn't stand. From the second dose! But I know that it does help some people. It's such a gamble. :(

Is the LDN helping you? I've read that it can lower markers for autoimmune hypothyroidism (Hashimoto's) in the blood, so maybe it would help those who have an inflammatory process driving their ME/fibro?

Of course, we don't have testing for this o_O When oh when?

I'm very impressed with your GP taking LDN on board like this. I wish all doctors were so willing to think outside the box and support their patients. Lucky you!
 
Squeezy said:
@arewenearlythereyet I also had horrendous side effects with carbamazepine. Dizzy, vomiting, crawling as I couldn't stand. From the second dose! But I know that it does help some people. It's such a gamble. :(

Is the LDN helping you? I've read that it can lower markers for autoimmune hypothyroidism (Hashimoto's) in the blood, so maybe it would help those who have an inflammatory process driving their ME/fibro?

Of course, we don't have testing for this o_O When oh when?

I'm very impressed with your GP taking LDN on board like this. I wish all doctors were so willing to think outside the box and support their patients. Lucky you!
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Yes carbamazepine is a case of desperate measures ...there must be better options for pain management.

I’ve never taken LDN, just the high dose naproxen (I think LDN is naltrexone...for a moment there I thought I had typed it wrong :ill:).

It was very effective and knocked the pain right into touch but I was only prescribed 2 weeks worth, so not sure the GP would approve of this ongoing ?
 
I think that part (LDN) was aimed at me!

I think it has improved my pain. That's where the evidence seems strongest. I suspect it's for chronic pain where the microglia are inflamed, rather than pain due to the nerves, as that's the proposed method of action. But maybe the endorphins just make you feel better in general?

I'm temporarily on a break so I can do a thyroid antibodies test. I know a few people who use it for Hashimoto's.

It's also cheap, so I thought, why not? I bought two years' worth of naltrexone tablets and just dissolve them in distilled water so I can take 4.5mg with a baby dropper. It worked out about £5 a month. Easy peasy.
 
@adambeyoncelowe Yes, thank you, thinking through concrete - definitely meant you!

Low Dose Naltrexone - @arewenearlythereyet you got it right :thumbsup: Sorry for thinking it was you who too it. Naproxen is v strong NSAID. Probably does nasty things to your stomach if taken ongoing.

adambeyoncelowe said:
I suspect it's for chronic pain where the microglia are inflamed, rather than pain due to the nerves, as that's the proposed method of action. But maybe the endorphins just make you feel better in general?
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Endorphins are affected by LDN? Sounds appealing! Great to hear it's improved your pain via whatever mode of action. Is it even possible to know if our microglia or nerves are the problem? Or both? :thumbsdown::ill:

Anyway, let's hope your antibodies are down too :)

Another thing to try! Great to have plans. ;):)
 
Squeezy said:
@adambeyoncelowe Yes, thank you, thinking through concrete - definitely meant you!

Low Dose Naltrexone - @arewenearlythereyet you got it right :thumbsup: Sorry for thinking it was you who too it. Naproxen is v strong NSAID. Probably does nasty things to your stomach if taken ongoing.



Endorphins are affected by LDN? Sounds appealing! Great to hear it's improved your pain via whatever mode of action. Is it even possible to know if our microglia or nerves are the problem? Or both? :thumbsdown::ill:

Anyway, let's hope your antibodies are down too :)

Another thing to try! Great to have plans. ;):)
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The proposed method of action is to briefly turn off endorphin receptors so the brain creates more. At full doses, naltrexone stops endorphins binding to receptors for longer periods, which is why it's used for opiate addiction (the opiates suddenly stop working).

Neuropathic pain is supposed to be more burning or searing than other types of pain.
 
Jenny TipsforME said:
@Invisible Woman I haven’t tried yet but it seems like you can get the private prescription here http://dicksonchemist.co.uk/new/about-private-presciptions/

The consultation is £35. It sounds like the LDN itself is affordable (though the link to current prices is broken)

http://dicksonchemist.co.uk/new/private-patients-registration/

Is this what you did @adambeyoncelowe ?
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Yes, initially. There's an upfront fee of £35 for the consultation, then a cost of ~£20 each month, for three months' medication. It evens out about £35 per calendar month. That was enough for me to try it.

I told my doctor, and they noted it on my file. You'll need a prescription to buy it in the UK, but it's dirt cheap to buy generics from overseas, and this is legal.

Ideally, though, you want to try it on prescription first to see if it works for you. If you do buy from overseas, then you'll want to join a support group for LDN users (there are loads on Facebook), and someone can point you to a pharmacy or distributor that is reliable and has been tested by others (pay with a credit card for extra protection).

If you've got a very good GP, they may order it on the NHS. There are details on how your doctor can make the order at £40 per month on the NHS (rather than up to £300 from a local compounding pharmacy), of which you'd only need to pay £8.80: http://www.tpauk.com/main/article/ldn-research-trust/

Apparently, though, LDN has been listed red (doctor's discretion but not recommended) for ME. That means your doctor has to be willing to take a risk on it. I'm guessing this is for the same reason we can't get antivirals and other immunomodulators, and we probably have NICE and the BPS lobby to thank for that.
 
I should add, there's an LDN medication tracking app too. It's being used to support future study (all subjective data, sadly, but I think it's a cheap/free way to add to the research literature while the funding comes for something bigger). I fill it in once a month or so, but you can set daily reminders if you want to be more specific/accurate.

Link: https://www.ldnresearchtrust.org/ldn-health-tracker-app
 
Jenny TipsforME said:
LDN I’m interested in but I’m suspicious of the evangelical zeal around it. Over enthusiasm rings alarm bells with me, though of course if it really helps why wouldn’t people be enthusiastic?
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Me too. My new doctor wants me to try it as her patients generally do well on it and it’s not associated with any big side effects. From what I gather people generally sleep better and have less pain issues (when it works). Would really love some more nuanced reviews, though.

It seems from what people are reporting on a designated fb group that PwME should be extra careful with the dosing, starting extra low and with longer intervals between increases.

I’m going to give it a try, starting next weekend.
 
I can't take any NSAIDS at all, and have a good deal of constant body-wide pain that drives me nuts.
I am currently trialling, with surprising success, PEA (palmitoylethanolamide).
Was expecting it to do nothing, really, and I'm very pleasantly surprised by how many notches the general pain levels have gone down.
I bought a pack with capsules and topical cream, and they both work well.
 
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