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Sticky Blood-Hughes Syndrome Support
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What are the options for joint and muscle pain?

When I saw Dr K on Thursday, we spoke briefly about amitriptyline (which I tried years ago and gave me nightmares) and plaquenil. We didn't come to any conclusions, as he is going to ask my GP to refer me to him at St Thomas's for further investigation. I've got some sort of low grade connective tissue disorder (don't know what that means, except that it's not full-blown lupus), and I'm in increasing amounts of pain in my joints and muscles. dr K referred to fibromyalgia as well, as all my trigger points are tender.

So is plaquenil the type of drug that helps with muscle and joint pain?

I'm wondering if I can somehow email Dr K to ask him to recommend to my GP that i trial something prior to seeing him again. Is that a good idea?

All I know about plaquenil is that my sister's on it (she has sjogrens) and it hasn't really helped her (yet? I know it takes a while to kick in).

I can't take NSAIDS coz they upset my stomach big time and co-codamol is ok v short term but I do get rebound headaches with it if I take it more than a couple of days.

One last thing! Is pain like this common with APS, or is it more the associated conditions that come with it?


6 Replies

That's a difficult question to answer - pinning down what pain is being caused by what when you have a number of things going on is almost impossible To do personally.

I can only speak from what I have found helpful and Im in almost the same situation as yourself. I have found a really good Myofascial Release Therapist who I can go to when my pain levels get bad. If you google MFR you will find therapists in your area but its important to find ones that have trained properly and to the correct standard probably on the lines of the Barnes principles. one may well include some other therapies in their techniques like craniosacral therapy or some osteopathy but as long as they are properly trained you should get good results. This will help with trigger points in particular and any that are really stubborn could be treated with trigger point injections which will be done at a pain clinic.

Because I'm on heparin I can't use any kind of NISAID so I'm limited to paracetamol now. Using the above with paracetamol and Plaquenil I find that I can just about control things.

Also hydrotherapy is very good as it keeps your muscles moving in very warm water, so if you have a pool near you try and get your GP to refer you there as they will have courses run by physio's designed for people with pain.

Hope that is of some help. X


I am very new to Hughes Syndrome, so do not know what medications counteract with others.

I do however have fibromyalgia and myofascial pain. Myofascial release is great for getting.knots out of your muscles. I have.mine as part of a.massage, so.get the whole relaxant effect.

A lot of us who have fibromyalgia have tramadol, I do not know if you can. Tramadol can help with serotonin levels too. As research is now showing fibro as a chemical imbalance, it helps.

Muscle relaxants are said not to help with fibro but help me with myofascial.

Amitriptyline is drug of choice for Gp as it is cheap option. Rheumy has not put me on Lyrica (Pregabalin) and duloxetine.

If you are allowed medication like tramadol. Take 1 tablet to start with as can send you away with the fairies. Pregabalin I felt like I was drunk for a couple of days but it soon subsided.

I hope you, Gp and specialist can sort out your meds soon.



Unfortunately with Heparin and warfarin many on here cannot interact with some of those meds. Amitriptyline is used by some as it helps especially for those with Migraines although the anti epileptics usually work better. Tramadol cant be used and some can use Lyrica although I didnt find that helped that much. as I said most of us find Plaquenil a better choice. For those with Hughes just taking Aspirin the medication options are wider.


Thank you very much ladies. Is plaquenil helpful for muscle pain as well as joint pain? It's muscle pain that's the worse for me at the mo. I'm on clopidogrel for the Hughes at the moment, pending Prof K's investigations.

I've heard that the generic plaquenil often upsets stomachs - does anyone have any experience with that? My tummy reacts to most anything, so I need to be careful.


I would most definitely ask for the brand and not allow the generic. I got stomach issues with the generic and wondered if it was a filler as Im Gluten intolerant. Prof Hughes always asks that his patients are put on the brand.


I was on codeine phosphate, tramadol and paracetamol but pain clinic put me on Butrans patches (buprenorphine) and paracetamol. Can't say I like it but they make pain manageable though, as you may imagine, it brings its own problems and that includes withdrawal symptoms when I've tried cutting the dose. One of its strengths is that I don't forget to take it as I just stick them on once a week, I was always forgetting the codeine and tramadol..


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