Hello everyone and happy holidays! I hope you have enough extra 'spoons' to get you through. So far, I'm doing relatively well for the winter season. Normally, I am in horrible shape in the winter; this year I've had a lot of extra challenges. The Dutchman and I went on a romantic spa getaway to Bath a few weeks ago which was lush but also very tiring. My son is home for an entire week before heading to his dad's, and having a hyperactive son with autism home by myself for seven days is proving to be just as exhausting as ever! The Dutchman and his family (met the parents!!!!) were over, then I did a early Yul feast with me and son, and then a Yul feast with Dutchman's family. I'm officially done in and I have two more days to go before son is off and I can collapse! I know, I'm probably an idiot for doing so much but things have been stressful for my boyfriend and I'm trying spread a bit of holiday cheer.
One of the things I am still struggling with is while I'm on biologics, I find I still need pain relief. My back has been troubling me immensely in the past week (no wonder, really, I'm clearly overdoing it and I'm on strict orders from Dr Dutchman to take it easy for the rest of the month). I finally resorted to taking my last Tramadol - I had requested a scrip back in Sept while I was waiting for my new etanercept scrip to come through. And, because the stuff is precious and my usual GP would never prescribe, I hoarded the meds and only took them when I needed (fair dos, Tramadol makes me 'trip ballz' and I only take it when the pain is excruciating - thankfully rare now with the change in biologics)
My GP had told me if the biologics were working then I shouldn't need pain relief, but the more people I speak to on biologic medication, the more tell me that they still have pain and still need to have it managed and treated. Does anyone else have this as an issue? Don't get me wrong, the etanercept is starting to work - my inflammation markers are going down - but I'm still feeling pain now and again, enough so this week that I've begrudgingly requested more Tramadol to get me through till spring.
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Silvergilt
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Many thanks for this update! YAY: glad you've grabbed happy times with those you love and new "family". So so sorry you've got all this flaring SG 😖. Typical: something similar hit me after a little spell seeing old friends & family at summer's end 😏. I'm lucky: managed to hang on thanks to increasing daily pred & playing hermit (still am). But I always wonder about pain meds.Please remind me: which biological are you on?
It was really lovely, his parents are charming, and seeing the interaction with them all was adorable (much to Dutchman's embarrassment!) Glad you managed to keep the flare to a minimum. I'm currently on benepali (a copy on etanercept). I was on golumimab but it stopped working. Only been on this new stuff for a few months but the bloods review shows it seems to be working for inflammation at least. To be truthful it may be the back pain and everything else doesn't have anything to do with the RA at all, but might be the EDS (still waiting on an appointment). Either way, I'm in pain from time to time and nothing over-the-counter works. Tramadol or nowt, sadly - though it took a long while before that was the case.
Silvergilt Hi. I take the biologic Cimzia and while it has reduced the swelling and inflammation i still get break through pain in the joints already damaged my the RA. I take Naproxen which while it takes the edge off, never completely takes it away. I was on morphine patches but an allergic reaction meant I had to stop. Oramorph was the same.
You do not say when your next rheumy appointment is, if it is a long way off perhaps it may be worth giving them a ring.
I was told at my last appointment that biologics did not stop you having flares.
Not sure how helpful I have been but hope you get some relief and Happy Holidays.
oh poo I see what you mean about you feeling my pain! Mine is apparently in my tendons rather than joints and is RA secondary to Sjogrens so non erosive in same way as Lupus (but bilateral like RA) the rheum explained. So this is consoling as I don't have to worry so much now as I used to when my diagnosis was RA. But the hips and back and neck and neck are OA for me and DMARDS abs biologics won't help that as you know. Could be similar with you unless you know otherwise -as back is usually OA I believe -in which case you will need pain meds despite the biological of course.
So I'm identical about tramadol - in fact it paralysed me down one side three times last year before I made the connection! Lucky for me paracetamol taken round the clock as directed at max dose does take the edge off as I'm an infrequent taker of pain meds. Naproxen also works like magic but I just can't risk the gastritis worsening at present as worry more about my worsening GI problems than tendons or joints.
I'm a hoarder too - lucky new GP gave me Zopiclone for my arsenal so that's my once a week trip covered. Otherwise I've got something called Nefopam and Meloxicam and Naproxen all ferreted under my bed in drawer for emergencies. Pain will take us to some dark places -as will sons on spectrum occasionally (mine is 24 year old on other side of the world now!). Other two sons have agreed that this, our first ever family Xmas without him, will be a tad sad although he's always been extra impossible at this time of year so entirely understand why you're flaring! He is laughing at the thought of driving his 7 flat mates nuts in 45 degree heat on Xmas day, instead of us this year! His favoured Xmas day option is a burger with nothing green, and tons of iron bru and tv while they all go off to Bondi beach for a surf!
So the Dutchman and his family sound like a real tonic to focus on - and in all in favour of crash and burn approach over sensible pacing sometimes. Life is too short to pace but go easy on the trammy please! X
Silvergilt, no health professional should tell you that you can't be in pain. I had a rheumatologist who said that my pain was not caused by lupus because my bloods were responding to treatment.
I eventually switched and my new rheumatologist says if you have symptoms lets work together to eliminate them, it's such a relief to know that someone is listening!
You mentioned tramodol , but have you tried medication for nerve pain or nsads. I would insist on a referral to a pain clinic where they can help you find the best relief for you.
I've tried all of the other pain medications and nothing worked - paracetamol is like taking smarties, ibuprofen sort of works but there are contraindications for me. Naproxen was ace for a while but gave me lung infections often. Cocodamol is just a tablet taking exercise - doesn't do much else. There was a very strong NSAID I was but it needed an arsenal of stomach-protection medication just to be able to take it (again, contraindicated). And so, now tramadol.
The pain clinic can't teach me anything really as I have been diagnosed with fibromyalgia nearly 14 years ago now. I've done all the 'how to manage your pain' common sense stuff for years. It's the acute breakthrough pain that is a problem, and none of the lower end medications do a jot anymore. It took a long time for me to even convince my GP that I wasn't just a drug seeker when all the lower range NSAIDs stopped doing much. Moreover, I'm under investigations for another disease which (ironically enough) means taking NSAIDS may be completely contraindicated. Granted I won't be able to do much about that yet.
Just another thought if you have exhausted all others. As I have also suggested to twitchytoes this morning, is it worth considering a TENS machine? I find mine useful when the pain is localised to a specific joint or area. It doesn't cure anything of course, but it has no side effects or drug interactions.
That exhausts my knowledge of pain control....hope you are feeling better soon.
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