hi, feeling particularly low today (and in pain / exhausted).. 18 months on from diagnosis and shortly due to start biologic, as do have some active disease but not where most of the pain is.
Am in pretty much constant pain in my knees, with stiffness, but also with burning type pain which affects my sleep. My consultant is unsure whether this pain particularly is solely RA. And am generally feeling pretty rubbish - stiffness, fatigued, upset stomach
I have been under a lot of stress recently as face losing my job (hospitality industry) which is worrying so much as I don’t know how else I’d work (am s single mum), so I know this isn’t helping. I guess I’m just concerned that this pain might stay with me.. or that i am being a hypochondriac.
I know until I start biologic is hard to judge. On MTX my pain was much better managed, but side effects intolerable,
So my question is I’m wondering whether I can be suffering with RA symptoms, when active disease is not showing in the areas I have pain? Does anyone else have this? Feeling pretty miserable right now.
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Sapphire1701
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My bloods have always been pretty much ok.. which my consultant says isn’t definite for some. I was diagnosed from high RF factor & anti CCP & by ultrasound / pain & swelling.
I think the lovely menopause is heading my way which I know makes my RA worse..
How miserable you must be feeling especially with your job in jeopardy. So sorry as that’s a real killer when it comes to RA and added pain from stress.
You’re NOT a hypochondriac and you aren’t alone. You can be suffering from RA -it’s systemic and doesn’t just affect joints - and even though your disease may not be evident by swelling in your hands etc it doesn’t mean it’s gone away. You may also have something running alongside it and your rheumatologist will be investigating what your other pain is being caused by. Upset stomach may be stress, may be medication side effects, maybe something that needs further investigation.
As you’re going to start on a biologic you may find that it will turn things round for you. It’s trial and error as to whether you get the right one to start with but with any luck that’ll improve your grumbling RA symptoms.
The stress unfortunately makes all RA problems ten times worse so hope that gets resolved really soon and you have support from family and friends to tide you over what is clearly a horrible time. Tell your doctors what is going on in your life and any help that is offered is worth having. All the very best and let us know how you get on.
The burn was horrible so I totally understand how down it gets you. I was up most nights for hours at a time in tears with the burning pain. The only thing I found that helped me was deep freeze gel, it doesn't exactly stop the pain I don't think but changed the sensation enough for me to get back to sleep. Fortunately for me MTX seems to be working reasonably well and 5/7 folic acid now seems to be controlling my sickness and tummy troubles. I really hope that whatever meds you try next do their thing and you get some relief 😮💨 Sorry, just re-read your post, how is active disease not showing in the areas you have pain? I thought the main sign of active disease was pain? I'm quite new to this, only diagnosed 6 months ago.
Thank you that’s really interesting to hear you have similar pain. My consultant was quite dismissive, as in suggesting it wasn’t specifically RA pain.. albeit when I was on methotrexate I didn’t have it. I wish I tolerated MTX because it worked!
But yes keeps me awake often, so resort to strong painkillers and low dose of diazepam as I get so anxious re the lack of sleep and then having to work.
I will try the deep freeze gel actually, I’ve tried various gels but not a cold one. And just really hoping once I start biologic things will improve. This pain is so debilitating.
I have to say that I didn't specifically mention the burn to my consultant but I just assume as I didn't have it before and MTX seems to have sorted it that it is definitely RA related! Can I ask though, how is active disease not showing in the areas you have pain? I thought the main sign of active disease was pain? I'm quite new to this, only diagnosed 6 months ago.
It’s the first time I’ve mentioned this kind of pain, as likewise on MTX this pain was gone. My RA started in my knees, to the point I couldn’t walk, filled with cyst at the back.. but I also have OA in both knees.
Active disease has always shown in my knees, but not at last appointment. Though as I’ve been on regular naproxen (for months) this may be masking.. and I do have active disease on ultrasound in my hands, and early erosion. I’ve just never had high disease in my bloods, so CRP. I honestly don’t know how it’s all measured. S nurse in the past had said to nf she’s seen people in agonising pain all over, but very little clinical active disease. So I imagine it’s subjective and why they use other markers for assessment. I’m sure others on here could explain that better than me.
Though welcome to this journey, that I’m sure we’d all rather not be on.. I still feel new to it 18 months in, and still adapting to the changes. but this group is an absolute god send x
My knees were also where RA started and are still, as my rheumy nurse calls them, my stubborn joints. I got huge relief at my last appointment when she drew a load of fluid off my worse knee and put in some magic steroids, I'm just hoping this relief lasts and the MTX takes over where the steroid leaves off but like I say, I've not had the burn since about 6 weeks into taking MTX. Try to stay positive, something will work for you, its just finding the right mix, I know that is easier said than done though 😒
Hi Sapphire. You’ve come to the right place to vent your spleen. We all know pain is a pain! We all know the different types of pain & other feelings you get with RA. It can really bring you down. Mentally & obviously physically. I do feel for you re the job front. Plus being a single parent. (Not me. I’m relieved i never had children. Instead i have a chunky little hamster called Sidney!) You’re going through the menop too. (Me too). That’s pain enough. A real rollercoaster. Some days i can’t control my emotions, especially if i’m in pain. What i’ve found. If i’ve taken strong painkillers at night & i haven’t slept them off. The rest of the day i’ve felt crap. Really foggy & groggy. (That can be the menop too). Have you asked your GP about HRT? I’m obviously not telling you what to do. But maybe you could try & lay off the Diazapam? It can be addictive. I was given it when my lovely mum passed away. We were very close & i was all over the place. I took a few. But i was careful. Didn’t take the whole course.
Just try & think this is temporary. You’re starting a new medication soon. So hopefully this will help. I have an infusion every 6 weeks & i know. I can’t walk without it. Makes a massive difference.
Have you told your ‘bosses’ about your condition? Maybe they could give you less strenuous stuff to do. Your job must be knackering. I know i could never do that sort of work. I admire physical hard work. But i just couldn’t do it. Anyway. Good luck with everything. Hope you can get a more ‘balanced’ lifestyle soon. Ps Sid says hi. X
Hi vixen, thank you for your reply.. and yes this place helps so much.
But yes I have got a lot going on, and the work thing is awful.. it’s more the business is facing bankruptcy.. lots of hospitality businesses are closing. I no longer do the physical aspects of the job, but run the operational finance side. But the uncertainly is awful.. and I’m not in the best place physically or mentally to think about looking for work. Amazing that just 2 years ago I’d be running 12 hour shifts on my feet all day. Not a chance now..
and yes Menopause too.. and yes we’ve discussed HRT. Was on it briefly but the nausea was awful, so now am waiting for biologic to start and do one thing at a time.. and yes aware re diazepam, I take it sparingly. I’ve had some big traumas historically and to avoid complete crisis point it’s the only thing that works. But very mindful not to rely on it. Painkillers at night fortunately don’t make me too groggy.
So really hoping the biologics will work for me. I’ve heard good things from others so 🤞🏼
Hey Sapphire. 12 hr shifts running round? Wow. I know it’s a big shock to the system when you’re diagnosed with this bloody condition. I was 21 when i was diagnosed. Now 52. So i know about having to ‘slow down’. Just know. You can come on here. Day or night. Again. Good luck with your new treatment. At least with your job situation. ie sitting down. Not running around. You can work from home? Let us know how you get on with your new meds. X
Ah it’s been a while since I did that.. although actually I’m in less pain moving than sitting down. I can’t sit at a desk, I have to have a high standing desk.. which for a few hours is ok, but not sustainable. So yeah oddly sitting is the worst for me. At home I need my knees relatively straight to be comfortable.
Wow at 21.. I can’t imagine how that was for you, imagine it was a lot harder then re medications etc.. bless you.
But the work thing hopefully will resolve if the meds sort the pain. On MTX I was a lot more mobile, but it made 2 days of the week unbearable. I would probably consider it again tho tbh!!
I will post how I get on once I start treatment. They’ve not told me how long till I’ll receive biologics but understand it can take a while x
So sorry hearing all this. You are the same age as me, similar time from diagnosis and methotrexate alone wasn’t working for me either. I’ve just started on my biologic and it’s changed my life (I’m only two weeks in, it worked immediately for me, I just hope so much it lasts). Things that felt impossible now feel possible. Hold on for this biologic coming (mine took ages from decision until I actually got it), it may well change everything.
Thank you this is really reassuring to hear, and glad that so far it’s working for you. I really hope it does for me too, could I ask how long it took for you to receive? Mine was only requested 3 weeks ago and I wasn’t given an indication of time.
Hi I am so sorry to hear about your pain. I was the same and thought I was imagining it. Fortunately I had an appointment with my rheumatologist and he did some tests and I have now been diagnosed with fibromyalgia. Xx
Thank you.. I have actually been wondering about fibromyalgia, tho pain is mostly lower body . But I get other symptoms too. Think there’s so much crossover.. I will wait to see how respond to biologic and due to see consultant again in 3 months.
I’m glad though you had your pain validated (though I can’t imagine how that is for you), but yes feeling like I’m imagining it and told oh if donc think is RA (when I’m sure it is) is v frustrating x
Hi Sapphire. Sorry to be a bit late to this conversation, I ended up in A&E this weekend with injuries to both hands so wasn't able to type (the dangers of DIY!).
I wanted to reply because the challenges you have been experiencing I feel are somewhat similar to my own.
I've been on MTX for 18 months and I've been fairly pain free since starting it. My symptoms also started in my knees and became so bad that walking was very difficult and sleep impossible, despite taking opiate based pain reflief.
The MTX didn't work until the dose was increased to 20mg, but it made me feel very unwell. That improved once the folic acid was increased. However I have sufffered from chronic fatigue since starting the MTX. I suffered from brain fog and major balanace problems before I developed RA, but the debilitating fatigue added to these existing problems has left me feeling permenantly very fuzzy, unable to concentrate and disconnected from the world aorund me.
But my pain is very minor and CRP low (1) so like you it apears I have no active disease. But the fatigue is so bad it's making full time work very challenging. So despite being relatively pain free and blood tests suggesting no active disease I am like you asking to try a different drug. I have an appointment to discuss this with rheumatology end of April. Coincidentally after my telephone appointment the Dr added fibromyalgia as a secondary condition, without any physical examination as yet. I am also asking my GP for a thyroid test, as some of my symptoms are consistent with hypothyroidism.
Hopefully a change of drug will bring the improvements to your quality of life and well-being you deserve.
I am also so sorry to hear about the stress you are experiencing. I have suffered from anxiety and depression most of my life so I really do empathise and hope you are reaching out for the help and support you deserve.
hi Sebastian.. well sounds like you’ve had a lot going on, I hope your hands are going to be ok..
yes mine was knee first too, but accelerated by covid. I could barely walk early on either and got a bakers cyst which was agony! MTX injection did work, but side effects intolerable.
My crp has always been low too, my consultant says that can be the case even with active disease. But yes I hear you with regards the fatigued. That’s probably been the hardest thing to adjust to..
I have been on Leflunomide since MTX with little side effects, but not full control of disease so consultant said I am eligible now for biologic. I really had to push how debilitating MTX was and how much it impacted my ability to work and quality of life. For me it affected my mood too to quite a severe level.
I have wondered about fibromyalgia too..
but I hope your appointment goes ok and things start to improve or you can change medication if you are able. Others tell me these first few years from diagnosis can be particularly hard.. my mental health has really taken a toll too. So similarly I can also empathise
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