NRAS
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Why have I still got pain?

I’m now on week 7 of methotrexate, after my Rheumy finally realised the sulphasalazine and hydroxychloroquine weren’t doing anything. But instead of taking the other two away, I’m now taking all three.

The added methotrexate is definitely doing something. The flu like symptoms have gone away and the swelling has reduced in my hands and wrists, and even the chronic fatigue is improving but the pain is still there, just as bad as it ever was... and that pain is the thing that is still preventing me from going back to work. I can’t use my right hand to design. Still.

So does that mean the drug is working, or not?

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I have a bottle of morphine if it would help lol, not really, I don’t think the complete pain ever goes but it gets less and less, hopefully it will ease off and You can relax more, when I went to see my GP about my swollen ankles she diagnosed it imedeatly and gave me some morphine patches while waited to see the consultant a few weeks later, they really do help me by easing my pains. Now they still work but at a higher strength and my body is HOOKED lol, please don’t be hasty and ask for something stronger because a lot of meds are ADDICTIVE, SO CHOOSE CAREFULLY.

PHILIP

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I know. After my knee surgery I was in Tramadol for 3 months. My surgeon told me the medical world called it Dirty Heroin and to wean myself off very slowly.

I now take Diclofenic slow release but they’ve told me it doesn’t agree with the Methotrexate. Arghhh.

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Great caution, opiates can often cause more problems than they address. I have a gene mutations which processes opiates at an excel earthed rate. The good news, after fifteen years of Oxycodone I have no issues with addiction but also no effective pain relief.

I would very strongly recommend CBD powder or oil. It is non euphoric portion of plant but has even reversed stage four cancer. I also have Synovitis and Tendinopathy, bursitis etc.. All very painful and I am allergic to anti inflammatories. It can be obtained online and I am not certain of legality in Uk. It is not Thc but is made from cannabis plant. So is clothes so that is legal ha ha

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My boyfriend has a prescription for medecinal marijuana. We have straight CBD oil and another bottle of 1:1 ratio. Trying to get a good mix to help for pain. Any ideas?

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I use a vaporizer. Studies have shown that people with RD have twice the number of receptors in joints. This is why it is such an effective anti inflammatory. Phoenix Tears is also great. I cannot deal with that one personally. It makes me nauseous. But a friend of mine loves it.it is a matter of choice. With the compassion club you get exposed to all types of option. There are eatables, butters, capsules, oils, cannabis etc. Depending on where you live (relative laws and availability). The other option is a vacation to a state or country where it is legal. If you find it beneficial apply to your doctor for a prescription. There is a huge surge in reach into medicinal benifits of the plant in all forms.

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It is a balancing act of trying to find the mix and dosage of drugs that will tip your see-saw over to the good side. I too am on all three and I thought the hydroxy was doing nothing - until I stopped taking it and a few weeks later I realised it wasn't useless at all. Your consultant is using the step-up approach where you add more drugs until you get the disease controlled. And then, once you get into remission you try out talking them away little by little.

And as for the pain...everything about this disease is slow. And if you have had severe inflammation it can take a long while after the swelling reduces for the nerves and so on to get back to normal. 7 weeks is not long in RA world, even tho' it sure feels like it when you are in pain.

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The thing is my last blood test was quite positive. My ESR and CRP levels were only slightly raised which means the inflammation is much reduced. The pain is so debilitating. And now I think that maybe the pain is something else. Osteo... nerve damage?

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RD of any sorting...as you are finding out.....is a slow business, but I know patience is in short supply when you are hurting.....but unfortunately we often don't find the right first time round.

Why don't you ask your rheumy for something for the pain......don't know which analgesic you can take with your cocktail of meds...but do remember Mtx can take up to 6 months to kick in completely....7 weeks isn't really time to judge.

But at least things are going in the right direction for you now...really hope you get some relief very soon.

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Thank you x

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Depends . . . different for each of us in short-term view, Jules13 (💎’s 1️⃣3️⃣).

😌 🙏

Over time . . . if interested in longer term view, think 🤔 bodunchar best captured accurately, concisely: healthunlocked.com/nras/pos... (Scroll down ⬇️ toward bottom of (2-year old) post if interested.) A bell-clang 🔔 clear description of typical unfolding of a normal/ standard experience.

Things work till they no longer work, then something else is tried. The cycle is repeated again ♻️ & again ♻️ & again ♻️ . . . ad nauseum 🤢 🤮 . . . (Sometimes literally ad nauseum. 🤣 🤪 )

Sorta like a merry-go-round 🎠 , roller coaster 🎢 , Ferris wheel 🎡 combo ride all under the big-top tent 🎪 of disease/ pain management where we try to juggle 🤹‍♀️ the appropriate med cocktail 💉 💊 🍹 so we don’t feel like zombies 🧟‍♀️ , robots 🤖 , or aliens 👽 trapped within ‘walking dead’ 🧛🏻‍♀️ bodies . . . 😳 😯

Mind-blowing 🤯 (funny 🤣 & not so funny 😞 ) stuff . . . 🤭

We live & learn throughout the experiences & assess what works for us along the way — hand-in-hand 🤝 with our medics 👩‍⚕️ 👨‍⚕️ . . .

It’s ever-changing, ever-evolving . . . ♻️ ♻️ ♻️ . . . 😳 🙃

Wishing you the very best, 💎’s 1️⃣3️⃣ . . . . 🙏 🍀 🌺 🌞

.

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Your posts always make me laugh. So creative with your emojis. And I love that I have my own emoji for my name. Never even thought of that.

Peace and love. 💎💎

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.

Hopefully the deeper, serious 😐 (sombre) meaning has not been lost behind the giggles ☺️.

Profound, dead-serious realities ☠️ 😐 need looking at squarely 🔲 in the face 😳 — despite the patina of humour 🤪 to make a very hard pill 💊 easier to swallow. 😌

If there’s an over-riding thought 🤔 (of consequence) that might be imparted: think ‘big picture’ 🖼 , long-term, ‘birds-eye’ 🦅 🦉view, life-long/ lifetime/ lifespan context . . .

What you/ we do now (in the near-/short-term) has consequences, ripple effects, cascading effects down the road 🛣 — although we may be unaware of (or unable to comprehend) those consequences in "the now" (the near-term).

‘Down the road’ 🛣 does indeed come . . . 😳

Kindly, 💎’s 1️⃣3️⃣ , don’t allow the humour obscure the deeper meaning of the deeper truths conveyed. 🙏 😌

Merely a kind thought for deeper consideration/ serious reflection. 🙏 🍀 🌺 🌞

.

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Because in RD world nothing (except steroid injections) works quickly Jules, as you're realising, but when they do you'll appreciate them. I know you need things to work quickly to earn money so maybe some form of pain relief would be appropriate until your DMARDs reach their potential. Remember not to over stretch yourself, so no knocking nails in, you'll pay for it otherwise. Maybe your GP could prescribe something if you're not due to see your Rheumy.

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Patience has never been my strongest trait. I’m impulsive, spontaneous and adventurous. And this has changed me, this illness. My family and friends don’t recognise this quiet, sad, recluse that I’ve turned into. I don’t know where I’ve gone. Literally personality theft. X

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You're not the first & won't be the last Jules but you'll see, give it a while more & become controlled you'll look back & be so pleased you've got through the tough bit in one piece. Remember too it's not an illness, that conjures up something you get & it goes... you have a chronic condition which doesn't go so you need to adapt. You'll get there, honest, but you will need to be patient, even though you say you're not you'll learn to be & you'll still be able to do all sorts, it's not the end of everything. You've done well so far, listened to your body, so don't be so hard on yourself. You've moved into your own cottage, you did it, that's an achievement, a great big one. Go & see your GP, ask for something to help ease the pain you have. Any self help you can do too, warmth on sore joints, Epsom salt baths, a small electrically heated blanket does wonders, I use mine every morning after I've showered to ease my stiffness. If I'm sitting my electric foot warmer is always on, helps my feet no end. Lots you can do to help ease sore & stiff joints. I use Pernaton gel too, I can apply that as often as I want & it really helps take the edge off toothache-like pain. x

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Just started methotrexate myself. Will be on fourth week. I notice already a subtle difference, like something is shifting. Still got pain and stiffness, but different.

It takes some time for the drug to kick in (apparently). Boring isn't it.

Hope things improve soon for you.

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I know it’s doing something too. It’s hard to put into words but I do feel slightly better. X

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It takes 3 months for some medications to work and some even longer so be patient. And when they do work they work well, your life does not stop nor you ability to have adventures.

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Jules Methotrexate takes at least 3 months to tick in. This is how long it took me. You will get there hope it will work for you too.

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Been down your road! I was trailed on increasing dosages of MTX till I reached the max and then trailed on combination of meds. Each dosage was tried for 3 months. Every body reacts differently. I was assessed for a biological and passed and now take Humira. We are all in for the long haul. Yes it is frustrating but try to be patient, stress is one of the bad things for RA, and I hope you will get relief in time.

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