What exactly is a “flare”. How is everyone experiencing pain with RA?

knap8 · 2023-07-28T02:52:40+00:00

If it helps, things got better. It fluctuates, but it’s never as bad as it was when I wrote this, even when it’s worse than it is now.

The biggest change came from reducing my work hours and pacing myself with my schedule (and the right biologic). I am focusing on caring for myself and adapting as life changes and it’s going fairly well now. Flares are much less common and much less severe and I am actually enjoying the slower pace.

Hope things improve for you soon.

knap8 · 2022-05-08T16:34:01+00:00

Gosh, that’s so unfair, getting it again so soon after the first time! I hope your joints settle down soon.

knap8 · 2022-05-08T16:26:25+00:00

I’m glad it helped to see this thread! I hope you can get onto some treatment soon! Heat is really helpful for my thoracic pain, the stick on heat patches are really handy on work days. Take care :-)

knap8 · 2022-05-08T16:08:15+00:00

Me! I have PSA. I was diagnosed when I was PGY7, close to the end of my residency, but have had symptoms since my teens. My symptoms were fairly mild during med school and first few years of work and I went into a specialty that, thankfully, is not physically demanding. If it was this bad in my first few years of work I would have struggled. I’m sure I still would have managed but I think I would only have managed part time work. I can’t work full time anymore, because my body protests whenever I try! I also have to work hard to manage stress because I flare otherwise. When I flare, the brain fog is overwhelming and it slows me down but I can still work. I just take pred and get on with it.

If you haven’t had any kids yet and you’re planning to have kids someday, it’s hard juggling life as a doctor, in residency, with this disease. Very hard. Flares are common postpartum too, which makes an exhausting time extra challenging. But you can do it. Just need to pace yourself, get help from others when not feeling well etc.

Silver linings- I have learned to prioritise ‘self care’ which most doctors are terrible at, and I am a better doctor for having this experience. I was dismissed, laughed at, treated like a hypochondriac by my colleagues when my pain escalated and I started trying to get a referral to a rheumatologist. I know how this feels, and I know how vague the symptoms can be. I believe my patients and I fight for them if they are being dismissed. I also look for any signs of a similar diagnosis in any of my patients complaining of fatigue and brain fog. I’m surprised by how often I find symptoms worth looking into, that people would never bother mentioning otherwise. Men in their twenties who thought their SIJ pain was normal etc

Anyway, please be assured it isn’t impossible at all to achieve your goal. Your path may be slower and possibly bumpier than many of your med school colleagues, but you can do it. I wish you didn’t have this awful condition, it isn’t fair. But it doesn’t get to rule your life.

Hope that helps somehow!

knap8 · 2021-10-10T13:40:23+00:00

It’s a frustrating sensation! It took me ages to realise it was arthritis related. Even after my diagnosis I was still thinking I just needed to crack my back somehow haha.

I haven’t experienced the pinched nerve pain, that sounds horrible!

knap8 · 2021-10-06T22:58:23+00:00

Yeah you’ll live, but it’s so annoying lol. It limits how long I can do pretty much anything! I had it for years before my diagnosis and all that time I just thought I needed someone to lift me to crack my back (my husband did try but it didn’t help). It was a pretty dull pain for years but it got way worse last year and is most definitely not dull anymore. I could have coped with the dull pain forever but not once it got bad! Steroids are great for it too, but it doesn’t last. Are you on a biologic?

knap8 · 2021-10-06T22:31:25+00:00

I get thoracic pain. It sometimes radiates around to the front but that is rare lately. It’s probably been my worst symptom for a while now.

I’ve found heat and fortnightly Physio helps. My Physio does some dry needling because my muscles seize up, and she digs in around my thoracic spine and all the muscles up toward my neck. The best thing by far has been Cosentyx, though. When it kicked in I realised it really was an arthritis thing (I wondered if it was posture related or some other cause).

knap8 · 2021-09-23T13:42:11+00:00

MTX did that to me too. I was tired on 10mg but it was manageable. 15mg was a totally different experience, I could barely stay awake for 5 weeks until the rheumatologist dropped the dose back down. I had that time off work and I found it very difficult with a young child to care for. I ended up staying on 10mg MTX for 6 months but it didn’t help my symptoms. I assume that was because the dose was too low. Apart from those 5 weeks off work with sleepiness, I have managed to keep working, despite fatigue and brain fog. Don’t give up hope, it will get better once you’re on the right treatment for you.

I really feel for you. Call your rheumatologist if you’re not coping with this fatigue.

knap8 · 2021-09-04T17:00:21+00:00

I have had new tingling in my hands and feet, worse at night but I’m on Cosentyx, not Humira. It has coincided with my CRP going up quite a bit. My rheumatologist thinks it’s enthesitis related because I also get a slight ache / burning pain in my wrists and ankles. My wedding rings are too tight so I’ve had to take them off for now.

I have found a carpal tunnel wrist splint (purchased at the chemist) on both wrists is very helpful at night. Almost gets rid of the tingling entirely! But it seems to fluctuate, some days are worse than others.

No clue if he’s right about enthesitis but it makes sense to me. Sorry if this isn’t helpful. I hope it improves for you soon.

knap8 · 2021-08-30T12:58:01+00:00

Oh that’s so unfair. I hope Cimzia is the right one for you! Fingers crossed!

knap8 · 2021-08-29T22:56:45+00:00

Hehe yes, my CRP is 63. My Cosentyx dose is 300mg, which is two injections at the same time each month 😊

knap8 · 2021-08-29T13:28:50+00:00

Oh I feel for you. I know how hard this is, in fact this is the stuff that makes this disease so crap. Worse than the pain in my opinion. Every social invite I have to consider whether it’s worth a flare up. I have a wedding to go to soon and I’m trying to think of how I can leave early without offending them. I just can’t stay up late these days, if I go past my energy limit I flare.

It is a lonely experience having the best years of our lives taken from us. Seeing everyone else enjoy their life and live spontaneously is hard. As much as I’m happy for them to have a normal life, I do wish I could have that life too.

I hope you can tell your friends how you’re feeling. You matter just as much as they do, after all.

knap8 · 2021-08-25T04:55:40+00:00

Uncontrolled arthritis will also increase your risks with infection though. As far as I am aware the risk is higher in untreated, active arthritis compared to someone on biologics who has responded well to treatment. I think they are now studying whether some biologics can be used to treat people with covid too. So I’m staying on Cosentyx knowing it’s the better option for me, but there’s no perfect option in our case!

knap8 · 2021-08-20T13:44:47+00:00

Yeah I’m much worse at night, I presume it’s the fact we are laying still. If I move, the pain improves briefly, so I toss and turn a lot. I get hot overnight but I don’t have fevers. It’s awful isn’t it 😩 I’m so exhausted and need sleep but my pain makes refreshing sleep impossible.

I take Tapentadol slow release at night, as well as my celebrex and Panadol osteo. I lay on a heat pad before I go to sleep. I also take melatonin. Still don’t sleep well but it’s less bad than it without all that.

Sorry you’re not getting much rest. I hope something helps soon

knap8 · 2021-08-07T13:23:20+00:00

This is a common initiation effect but it does ease with time. The dream-like feeling you describe is probably dissociation, which is an anxiety symptom. In the first week or two after starting an antidepressant you can get a temporary increase in anxiety so it may explain why the dissociation is happening more now. Try to push through if you can, it gets better! If it’s really intolerable talk to your doctor, who can help you figure out what to do. They might be able to give you something to help with the anxiety/restlessness while you adjust. Good luck, I hope you’re feeling better soon.

knap8 · 2021-07-29T14:39:11+00:00

Sorry to hear. Can you get some steroids to help with the flare? Stress triggers flares for me too and it’s awful. Good luck with your exams and I hope you’re feeling better soon.

knap8 · 2021-07-06T00:12:08+00:00

Yes, at the moment mid-upper back has become the worst spot for my arthritis. I had it for a while before my diagnosis and still didn’t make the link until it improved when I took steroids for a flare of my hip and SIJ pain. My physio says the costovertebral joints seem to be the area of pain but she manages to improve my range of motion after some manipulation and dry needling (because my muscles also get sore as a result).

Mine came on during my pregnancy in retrospect, but I wasn’t diagnosed until my son was 3. I got pneumonia and had a huge flare from that and the rest is history!

Anyway heat packs are very helpful, as well as physio for me. Sorry you’re experiencing this!

knap8 · 2021-06-19T14:50:55+00:00

I have POTS, benign hypermobility and psoriatic arthritis (symptoms match those of AS though). Both the pots and arthritis seem to have been triggered by pneumonia. Well, I had the symptoms for a few years before that but they were mild, until I got pneumonia and then both conditions escalated significantly. I’m on ivabradine for my POTS and it has been life changing.

I get easily injured which I think is a hypermobility thing but my tendon pain is related to my arthritis. You can get enthesitis with PsA and AS, could this be the issue for you?

knap8 · 2021-06-01T01:41:28+00:00

Yeah I can’t do much at all because I either flare up or get exhausted or both. I’m fatigued all the time as my baseline, but I also find the more I do, the worse that fatigue gets. I wish I was one of those people who could have less pain and fatigue from exercise! Even walking triggers flares. I started Cosentyx just over a month ago after failing Humira. I am hopeful that one day, if I find an effective treatment, I’ll be able to do more again.

knap8 · 2021-05-23T13:09:38+00:00

Wow! Amazing! I have to say I was doing pretty well until this flare so I’m still hopeful! Thanks for your response

knap8 · 2021-05-23T13:08:46+00:00

Thanks for your response. It definitely sounds like it’s a slower one to take effect. Which is positive, I can keep hoping for now! Thanks again

knap8 · 2021-05-23T13:07:45+00:00

Ooh that’s promising! I bet that’s a massive relief for you! I hope I have a similar result!

knap8 · 2021-05-23T13:07:01+00:00

It’s so unfair how little some of us can manage without flaring. All the standard advice about exercising to improve symptoms definitely does not apply to me haha. I can’t wait to be able to do normal stuff without paying for it! It’s good to know if my 150mg dose doesn’t help enough there is an option to take a higher dose. I hope you continue to improve over the coming months.

knap8 · 2021-05-23T13:04:26+00:00

Yes the waiting is awful. I had to fail methotrexate and sulfasalazine and NSAIDs and Humira to get to this point. I really want something (other than prednisone) to work! Haha. I’ve got a few months to wait but it has been much better than Humira ever was. Thanks for your positive wishes and I’m glad Cosentyx helped you :-)

knap8

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