Advice on medication

[Mum007]

I have suffered with restless legs for many years. Up to now I have managed with iron supplementation and magnesium spray as medication usually has bad side effects with me. I was diagnosed with chronic pain syndrome 3 years ago. Not fibromyalgia as they said I didn’t have all the sore pressure points that were required to label it fibro. However recently the aching pain in my legs and thighs and fatigue has become unbearable. I am now considering trying antidepressants as I think gabapentin will give me too many side effects. before I talk to the doctor (could be any of about 20, none of which seem to know anything about rls and give me the impression fibro is all in my head) I would like some advice. Which antidepressant would be most suitable for pain without causing rls and causing more fatigue. Is there such a pill. I also wonder if the ‘fibro’ is related to years of thrashing about at night and exhaustion. I live in the uk. Any help appreciated.

[Hidden]

I'm afraid you're in a bit of a dilemma.

It would help if it was known what's causing your pain, other than it's chronic.

Antidepressants are now recommended for chronic pain, but most antidepressants make RLS worse. That includes amitriptyline.

In addition, amitriptyline from my own experience doesn't do much for pain. The idea is it's supposed to help you bear it better.

As regards gabapentin, it does have side effects, there's very little that doesn't.

However different people experience the side effects differently and to diffetent degreeas. The initoal side effects can wear off after a few weeks.

It also takes a few weeks to start working. With that in mind it might be worth trying it. ,(For the RLS not the pain).

[Hidden]

I don’t think gabapentin is any more likely to have side effects than antidepressants and could actually help your RLS too. However chronic conditions tend to require chronic treatment which means you could be on these things for years & eventually the effect can wear off and they can be hard to come off.Pain clinics, though hard to access can be very good at helping you deal with pain in another way. That does not mean it is ‘in your head’ but brains can be taught to ‘file’ pain as non threatening and to send it to a part of the brain that is less on the alert for danger once it’s been present for a while ( pain is really a warning alarm when it starts

I remember this from my days as a GP.

It is too easy for busy Drs to resort to tablets, there aren’t enough pain clinics & many patients feel they are being fobbed off and not taken seriously enough if not given treatment. I would try every other Avenue before taking pain tablets.

What is the cause of your chronic pain?

[Mum007 in reply to Hidden]

Thank you Alison7I have no idea what the cause is. I have had an MRI scan of my head and upper back which shows moderate stenosis and was advised to take pregbalin without ever actually seeing a doctor. I have had a lumbar spine MRI but am still awaiting the results 2 months later. The appointment with the neurologist (whom I have never seen) has been cancelled. No reason given. The pain is in my buttocks, hips and thighs. It’s a very strong ache or burning sensation. Gets worse after exercise and causes chronic fatigue. Had this on and off since menopause over 10 years ago. HRT seemed to sort it out. I am now wondering if I am still getting menopause joint pain after all this time but it is very painful.

[Hidden in reply to Mum007]

It does sound as if, from my medical knowledge, there is an actual medical cause for your pain rather than just an ‘upregulation’ of pain centres which can result in chronic pain though I think both can be additive.It does sound sort of spinal / neurological.

Have you already tried Pregabalin because of course gabapentin is similar & both work for RLS to some extent whereas antidepressants don’t & usually make it worse. Antidepressants have other features too & aren’t just used for their effect on mood.

I hope you get your mri result soon. Covid won’t be helping.

I wish you well

[Mum007 in reply to Hidden]

Thanks Alison7. No I haven’t tried anything yet. I will bare the pregbalin in mind if nothing comes of the MRI.

[Munroist]

I took pregabalin (similar to gabapentin) for a year and while it had a couple of pretty mild side effects it wasn’t a major issue and the benefits made it well worth it. I found it did suppress nerve pain and reduced anxiety and gave me a much needed mental break from the worrying and discomfort. The side effects were a bit like having one or two alcoholic drinks, some disinhibition and occasional tripping over words but these were barely noticeable and infrequent. It’s not normally difficult to withdraw from either other than some original symptoms may return. I haven’t tried amitriptyline but I looked into it and decided pregabalin was better. On top of which it’s now recommended for RLS and amitriptyline isn’t.

[DicCarlson]

I would not go down the antidepressant route - too fraught with discontinuation syndrome. You don't need one more thing! Then there's this... earthclinic.com/cures/chron...

[Mum007 in reply to DicCarlson]

Thanks for that. An interesting read. I have tried most of the supplements except guaifinesin which I have read rave reviews from fibro sufferers in America. Unfortunately it’s not available here in the uk except in cough mixture. I might give it a go though but it will be of a lesser strength and come with lots of additives I suspect.

[9642birss]

Sounds a bit like my RLS situation. First of all- I had been taking Alprazolam (Xanax) in a small dose for many, many years. It was actually prescribed for me by my wife's orthopaedic surgeon to combat my anxiety over my spouses medical problems. This RX never caused any problems or addiction...and I never had RLS while taking it. For insurance purposes I had to change doctors about a year ago. My new doctor, for some reason wanted me to taper off the Xanax and he substituted Sertraline . Terrible! Right away I started with RLS. Doctor then switched over to Gabapentin. Even worse! Still had RLS and some nasty side effects: Puffy eyes, sore muscles. Quit the gabapentin and convinced the doctor to go back to the Xanax. It helps somewhat but dosage .125mg is so small it really doesn't help with the anxiety. Anyway- On my own treatment program I now take an iron supplement, 28Mg of

Iron Glycinate and 500mg of Magnesioum daily. I take the iron in the AM and the Magnesium in the PM. I also take an OTC called "Rested Legs" All together this program has pretty much done away with my RLS. I know everyone reacts differently but you might want to try this. Sadly it seems many doctors just don't know much about RLS and it becomes necessary to look for your own remedy.

[Hidden]

Hi again, I'm afraid you're still in a dilemma! Sorry.

It's because you have both chronic pain AND RLS.

In the UK under new guidelines issued by NICE in April this year doctors can no longer initiate patients on a list of medications previously prescribed for chronic pain. This list includes opioids and gabapentinoids.

In other words, if you weren't prescribed pregabalin for chronic pain before, your doctor shouldn't be prescribing it now.

For people who were prescribed an opioid or gabapentinoid before, the doctor is supposed to discuss stopping it - to be replaced by an antidepressant. Which makes RLS worse.

Some doctors are already apparently forcing people off opioids, although the new guidance doesn't actually say they should.

However, pregabalin is still recommended for RLS so whereas you might be refused it for chronic pain, it can still be presribed for RLS. It might help then to clarify this with your doctor.

As for your pain, I would consider what Alison says, you might have an identifiable cause. Let's hope it's soon discovered.