Just lately, unbearable muscle and joint pain; roving around my body...not only kills but makes me sooo tired...seeing the rheumatologist Dr. Hughes told me to see here in Vancouver, Canada but not until July 3rd. I've had the pain come and go for years, but I'm in the thick of it now and it's actually hard to type. What are all of you on and what works for you? Many thanks and big love.
If you have muscle and joint pain, wh... - Hughes Syndrome A...
If you have muscle and joint pain, what works for you???
Prescription Meloxicam 15mg works for me.
This script is reasonable too, which also helps!
xx to all
Meloxicam is an "nsaid" and we need to becareful if on warafrin.
Hi I have plaquinil, it helps me by probably at least 60%. Also exercise + keep moving around as much as possible, I find that if I don't do some sort of exercise for 3 weeks I feel all joint pains start to come back like in the beginning! Even tho' it hurts I feel it would be worse without it.
Hope this helps + we can all understand what you are going through xxx
My muscles in legs have been so painful of late, I try to ignore. I am on Plaqunel and have not seen any improvement. Night time is the worse. Sometimes I feel that my muscles are so painful I just do not want to do anything, additionally, I am so tired. I must have a nap in the afternoon before anyone comes home and then I feel refreshed to begin again.
Hi Plaquenil and tramadol! all help.....does not cure all though but eases the pains alot!
Hi there I am a new girl to plaquenil, however I do try and do as much exercise as possible, healthy diet and to keep my weight down. I notice if I put on weight I hurt more. I also do plenty of meditation... oh and laughter where possible Mary F x
I take 15mg meloxican, leflunamide and 8 x 30/500 co-codamol these take the edge of the pain. A nice warm bath can also help a bit. I also buy and use arnica gel I find this really helps on the muscle pain especially, its from a brand called sbc and I get mine from the tv shopping channel qvc. Its definately worth a try. Good luck and I hope you get it sorted soon x x
I forgot my rheumatologist also gives me kenalog injections in my back these are good with the pain, likke you my pain is unpedictable and moves around often. Before the kenalog I was in uncopeable unbearable days now the pain is still there but on a much lower level. These probably help more than anything and the relief last a few months x x
Plaquenil
Just don't stop moving! My mis-informed rheumy (as I now know) attributed my increase in pain to the winter weather and he told me to back off of activities. A year and a half later I found this site, added 2 + 2, got into physical therapy (again) raised my INR, and started on the very weak salsalate for muscle aches. 6 months later I am better, but I may never recover all the ground I lost over the preceding 2 years. Don't stop moving!!!! Don't!!!!
And refer back to this site as needed when clueless doctors would rather lead you to believe "its all in your head" rather then acknowledge that our disease is very, very complicated.
I also get some benefit from topical creams compounded by my local pharmacist: one is a topical form of naprosyn (less bleeding risk if applied topically) and the other a formulation of ketamine, gabapentane and clotidine. The keto-gaba-cream (as he has named it) is better for the back and the naprosyn for easing inflammation from an arthritic bone spur at the top of my thigh. They are pricey, but they do help with the pain. But the biggest boasts I received were from the physical therapy and by raising the INR by 1/2 point (18 months of increasing pain and disability and all I needed to do was go from an INR of 2.5 to 3?????!!!!!) (Can you see my frustration boiling over this screen?)
Good luck.
And don't stop moving! (A physical therapist or exercise specialist can give you advice on the best way to exercise for you, given your age and current abilities.)
Gina
HI sweetheart, I, like you suffer with joint pain, I am constantly exhausted. Plaquenil doesn't seem to have great effect on my pain. What really helps me is accupuncture and exercises (swimming classes on warm water, to be precise). Weight lifting is terrible to me. In order to mitigate the pain, I take a tablet of dipirone 1g every 8h when the pain increases. Does anyone take dipirone as well?
My pain goes crazy when the weather changes. I can tell when it is going to rain.
I've been taking 20mg Amitriptyline for the past two years and it helps loads, especially when the pain is worse during the night as it helps me to sleep.
I exercise gently at the gym when I feel up to it, but have recently begun just swimming a few times a week as it's kinder to my joints.
Also, as above, a nice, warm soak in the bath soothes marvellously! When I hurt at work, I use a microwavable heat bag on my hands/knees/thighs.
I recently started Plaquenil too, but it's early days yet!
Hope this helps. x
I was recently diagnosed and after being on warfarin for the last six weeks it has raised my INR and I have noticed a huge improvement in my muscle aches and extreme tiredness.
Sharon
Hi, I find Osteopathy helps especially as I am so limited as to painkillers and other things that can help such as plaquenil as I am allergic to this and paracetemol, recently codiene and am not supposed to take too much ibuprofen as I'm on Clexane. Bit stuffed really!
Coincidently my nephew is an Osteopath in Vancouver so if you would like to know more about how it may help PM me and I will send you details of his clinic. He has the advantage of knowing about Hughes because of me. He never treats people he thinks he can't help.
Hope you can get more comfortable
x Sue
I swear by pure lavender essential oil in a warm bath..a few drops will suffice x
Hi i been started on imuran as for me planequil doesnt do much for joint pains.....i was on methotrexate which worked better(trying for child hence a no go for now)plus pain relief. gentle exercise.swimming i find useful.and about do gym under instruction for weight loss any excess weight adds to joint pains for me.
aisde from that.pilates may be good or thai chi as mentioned.i cartn have nsaids as they increase my photo sensitvty got lupus u see.
id ask for help from your doctor.
rest when pain bad.
do your joint feel hot?
hope you find ease.
What a wealth of info. You guys are amazing. Sue: I would love the contact for your nephew in Vancouver. Just got into one of Dr. Hughes' friends who is a rheumatologist: Dr. John Esdaile. He was unbelievable. Twelve vials of blood later.....I follow up with him in 3 weeks. Finally, someone who gets it. In the meantime, I've written down all your advice. MWAH...!
Hi..I'm in the states. My Hemo Doc is against Plaquenil - long story - but has to do with side effect / long run. I take a pain killer or I wouldn't be able to move BUT another thing I am trying is MUCINEX. They have shown it helps with Fibromyalgia and other body aches and pains. It seems to be working.
debi with APS in FL
debi...what exactly is mucinex? dr. esdaile gave me some rx for a heavy duty anti-inflammatory....just made my stomach upset and didn't touch the pain. i see him again in a week and will brink all the info you have all written...this is the longest bout of muscle and joint pain i've had; mostly in my legs. they are just aching constantly....