Hi, I don't know how to best word this but if anyone can share their experience I would be most grateful. I am due to start on Tocilizumab in the next two weeks after a tough few months of just being on Sulfa and Hydroxy (MTX caused me lots of issues so I had to stop it). The RA nurse rang me with my blood test results last week and they showed normal range inflammation markers, which surprised me as the RA joint pain I had been having for the last few months has been horrendous - and RA pain for me is so distinct, like shards of burning glass searing into my joints. I had shown the Rheumatologist about 20 photos of my ankles and wrists and she was pretty shocked.
I came across a post on here that what feels like RA 'active disease/flaring' joint pain could actually be the pain from damage the RA has done to the joints when the RA is not being managed. I just wondered if anyone has experience of whether joint damage pain feels like active disease/flaring pain - is there a distinction or do they feel the same type of pain? I haven't had a hand/feet X-ray in about 18 months, so I am not even sure if the RA could cause substantial joint damage in that time-frame, but it is curious that my inflammation markers were normal but the pain and swelling in my ankles left me unable to walk normally, having to go up the stairs on my hands and knees etc.
I am sorry if you have experience of joint damage, it must be awful. I guess I am trying to work out what is going on. I will be seeing the RA nurse in the next week or two, so I will ask her, but in the meantime if anyone can tell me their experience of this I'd be most grateful x
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I have a damaged knee (osteoarthritis) and a damaged toe (RA). The pain from those is very different. I find when my RA is active that burning shards of glass is a pretty good description!
Thank you, helix; interesting that your markers are also often normal. I always feel a bit of a fraud when mine come back normal, like I have to convince the Rheumatologist that the pain really is happening x
I have a damaged wrist ( virtually bone on bone). Luckily, at the moment my RA is well controlled on 400mg Hydroxychloroquine daily plus weekly Benepali injections. My bloods have never shown inflammation outside of range even when I have very clear swelling and fingers like sausages about to burst. My Rheumatologist has always gone by how my joints look and what pain I am experiencing. I find when I am flaring my fatigue is horrendous and this ties in with hot joints and swelling. To me it’s like totally exhausted muscles all throughout the body, weakness. Like I have run a marathon. My limbs feel like lead. When I have aggravated my damaged wrist ( typically after doing some jobs) it’s like a constant nagging dull pain , I class it as a bone pain deep inside, that you just can’t ignore and drives you crazy... makes me exhausted. I also get very sudden sharp pains where I guess the bone is catching something but it’s all over in a second but takes your breathe away! So lots of different types of pain which I think is typical in RA. So to me active RA ties in with complete fatigue which if lucky last two or three days, at worst I have had months of it but I think I did have an underlying infection which was not picked up at that time. Hope you have a helpful appointment but it may be worth you keeping a diary of symptoms to show your Rheumatologist which may show a pattern. Think about what you have done with your joints that may be the cause of some of the pains.
Thank you, Deniseelk. I would love to know more about the mechanisms of this disease, as that's three of so far on this thread who have normal bloods when experiencing severe joint pain. Also the fatigue you mention, yes it comes on like a huge wave and wipes you out. My fatigue M.O. seems to be sitting on the sofa with my family one minute, getting that feeling of a wall of exhaustion, then waking up 3-4 hours later with my husband and daughter having eaten tea and played games around me. They just cannot wake me up.
It's an interesting distinction between your damaged joint pain and flare pain. It sounds awful, bone on bone like you say x
Have a read of Moomnin8’s post today about a US paper on a small study on how they feel they may be able to predict the onset of a flare through blood samples! I found it very interesting and maybe an answer to why we know we are in the thick of a flare but our standard blood tests say otherwise! I must stress that now my RA is much better controlled I do not get the debilitating fatigue in the same way ( ie: my inflammation is much less frequent/ quicker ). For me inflammation = pain and fatigue. Do keep pressing to get your RA better controlled but this is obviously your Rheumatologists role but be very frank with them of what you are really experiencing since you last saw him / her!
I’m another one who only has small changes in my blood results when I flare. My rheumatologist know this and goes by my symptoms, swelling, pain, fatigue and the increasingly dry eyes which I get with a flare. My GP not so much.
I have osteo damage which is a dull and aching pain whereas when in a flare I feel as if someone is hammering my joints causing them to splinter.
At the moment I’m perplexed by the pain in one of my hips which is different again. My hip keeps giving out and at times the pain is almost like sciatica. My GP thinks it’s muscular and has given me exercises which if anything are making it worse and I’m now having to walk with a stick. I’ve been told I can’t have an x-ray at the moment but if I need a joint replacement I’d like to get on a waiting list as soon as possible !
Hi Creaky, that sounds really rough. I hope you hear some news about getting on that list soon. Everything is so unknown at the moment; I find it much more manageable to deal with symptoms if there is a possible solution in sight, with a date/time. Potential light at the end of the tunnel. I only need to use a stick occasionally, and it's only been the last few months, but it's a reality check, and I find it hard to process that it is me, if you see what i mean? But I try and tell myself that the future could be brighter, with the disease more controlled, so to keep an open mind, even though some days are completely awful. Good luck x
I’m having lots of hip issues as well and it’s on the outside of hip...rheumi says it’s chronic bursitis. She said actual bone damage of the hip expresses itself in groin pain. An ultra sound could be helpful to show snything soft tissue...poor u!
I have problems with my hips too but when I mentioned this in my last appointment I was told 'oh it's probably fibromyalgia'. I just thought, 'what???" It's a completely different condition and it hadn't been mentioned before. The pain is very similar to SBD which I had in late pregnancy, but obviously not that at the moment; it's like a grinding burning pain. I try and diarise symptoms regularly because otherwise I just can't remember in appointments the detail of how things are day-to-day. All the best to you.
Good question. I have varying degrees of joint damage in number of places but worst in knuckles, toes, shoulders and wrists. Unlike Deniseelk, my joints rarely swell and other than the prolonged pain in these joints, I can't honestly say I can tell the difference. If my RA does flare then the damaged joints can become more painful. The only joint or inflammatory pain I can differentiate is from a synovial cyst on the back of my hand next to my wrist. This thing aches a lot, which isn't too bad, but also has a very sharp electric type pain, which I presume is nerve related. Thankfully it only lasts a few seconds when I hold my hand a certain way. If it was constant then I'd be putting my name forward for amputation! I'm only joking ....sort of!
Hi wishbone, gosh that sounds horrendous. Electric type pain is nasty, so I get why you might want to chop your hand off. Please don't do it though, it would be awfully messy
Being serious though, it is fascinating that despite there being many commonalities within RA , we all have such individual experiences, in particular how complex it can be when there are other, unrelated, conditions added to the mix x
It is nerve pain for me too and that’s why it is so recognisable that it flashes like an electric shock. I felt it this week and it can be when it’s very rainy and atmospheric! I do feel thunderstorms in my arms and legs! Yes I know I’m a nut! Sharp and burning hot I always say. They aren’t normally swollen for me ... it can be when I’ve done quite a lot of activity in my hands and feet or when I’ve done nothing!
Seriously, do you think that your electric shocks could be due to low air pressure rather than a damp atmosophere? I'm no meteorologist, obviously, but think air pressure would be very low when there's a thunderstorm. Low air pressure could be the reason why some people's RA is worse rather than being caused by a rainy damp atmosphere. Just a thought.
Yes definitely so! I get cramps and shooting pains in my feet and hands especially. I was reading an article last year about joints and RA and the pressure getting into the small spaces inbetween the joints. Wish I had saved it.
Many years ago I worked at the Univ of Leeds and was in a huge long building with a glass roof which sometimes got struck by lightening. We were on the upper floor so the glass roof directly above us. It struck one day I was there and my ears went beserk (was wearing gold earrings so must have had something to do with wearing metal?) The tingling and flashing pain in my ears was so bad I shot under the desk and took the earrings out! I am scared of lightening anyhow so that was the main reason for hiding but it definitely affects me ... Stormy weather. 😳⚡️
Wow, that is crazy, Neon! Which building was it (I studied at Leeds Uni in the 90s)?!
I have another condition called Idiopathic Intracranial Hypertension, whereby my body produces too much cerebro-spinal fluid. It affects my vision, causes horrendous headaches etc. I have a shunt which mostly controls it but a change in weather can cause my headaches to increase. It is fascinating how our bodies may react to these invisible meteorological forces. I might offer my services to the Met Office
Hi JoWa, Yes who needs weather apps! LOL. I was spooked by the earrings thing and got under my huge sturdy desk and hid! My boss passed a cup of tea to me down there! I was in the Physics/admin building which boasted the longest corridor in Europe at ther time and had been featured in some TV programme where a chase down a long corridor was filmed or something! I worked there 1981-83 in the Office of the Registrar. I had an offer to study Fine Art there in 2003 but decided to go elsewhere as Leeds didn’t have any printmaking facilities at that time. What did you study? I’m sorry to hear of your headaches and condition producing too much cerebro-spinal fluid. I hope it is mostly under control. I also used to feel weird sensations in my arms when a remote control for a TV was used! I know, I’m freaky 😜Now we don’t have a TV (joint decision to not sit square eyed especially when I was studying for a number of years .. .. but we do watch selected iplayer programmes etc on the Mac.) Hope you enjoyed your time in Leeds. There lots to do and large but compact city centre and of course some lovely surrounding countryside.
Ha, I remember it well - I used to walk daily from The Roger Stevens Building to the library along that very long corridor. I studies Communications and Philosophy there in the mid-90s. Incidentally I had a part-time job in the Roger Stevens building in my 3rd year - I had to test all the AV equipment and lock up the basement and front entrances from 7-9pm in the Winter. The job was interesting but I am a complete wuss and used to be scared senseless being in that massive building mostly alone at night. it is a large echoey building and sometimes you'd just hear laughter, and well it could have been a late lecture but my imagination told me it was an axe-murderer waiting for me to get the lift to the dark and ominous basement. I was sooooo relieved when I graduated and left the job. Ah, fine art - my husband went to art college and I am in awe of his abilities. Do you work in a related field?
I’m a printmaker/artist/designer and an adviser in marketing and advertising, but haven’t done too much this year! I worked in graphics and marketing after my art college diploma in 1979 then went back to get the degrees I should have done and was recommended to do instead of the commercial design course! What does your husband do? Roger Stevens .. Didn’t ever hear it was haunted .. probably some naughty students paddling in the pool at the front. (Despite the irritant they put in it they still jumped in! LOL. )
It feels to me like electric shocks when the RA flares badly. The soft tissues twinges very acutely. It is worse in my hands. Extremely sore and almost like a burn too. My joint damage is widespread but worse in my hips and knees The pain there is a deep throbbing and seizing too. Don’t know if that helps but hope you are soon feeling better on Tocilizumab.
Thank you, Neon. Interesting that you too describe an electric type pain during flares. I am sorry to hear your damage is widespread. I hope you have a successful treatment plan x
It's strange, but when I get 'the burn' in my ankles they also feel all tingly and freezing cold at the same time. It is most strange, freezing and hot at the same time. Best wishes to you.
Thank you .. I have Rituximab infusions (but overdue at the mo due to the virus .. my choice I have postponed it till September) which have been such a fantastic thing in terms of my joints but no so in terms of respiratory issues such as sinus and catahhr wheeze (but working on those all the time!) I haven’t had the cold sensations you describe but wondering if it’s like a menopause type flush when your body gets so hot it has to cool itself off as fast as possible. I hope you have a very good response on Toci.
If the joint is swollen and hot, as well as painful, it is more likely to be a flare. Damaged joints produce a deep ache. This is my experience anyway.
It sounds as though your RA is very active, despite your bloods suggesting otherwise.
I have been reading about how the effects of eating clean, healthy foods with anti-inflammatory properties and little or no inflammatory food can alter your blood results even when you have a flare. It is all very confusing and the scientists are still learning.... as are we.
Oh, that is really interesting, Brushwork. I completely changed my diet about 4 weeks ago, so roughly 2 weeks before I had my bloods done at the hospital. So I had been experiencing severe pain in my ankles, wrists and elbows for circa 5 months and my bloods were done about 2 weeks ago - it'd be interesting if my diet overhaul had had an impact on the bloods. I basically have been low carbing, high protein, moderate dairy and eating lots and lots of veg (but still have my tea with sugar; that I can't live without). Do you have any recommendations for reading around this topic? Thank you too for your description of pain from joint damage. All the best x
I agree re the deepness of the pain of a damaged joint. 😑
Well when I’m flaring I feel like I have the flu. My fatigue is off the scale. My joints are never that painful just achy but I’m stiff and swollen and very slow both physically and mentally . My osteoarthritis hurts when I move the joint
My bloods never show inflammation either but the inside of my knees hips ankles and hands feel as though they’re on fire they ache so bad and sometimes as they are now and have been for a few months, feel as though they’ve been bashed by a hammer. Fatigue is another thing seem to get a wave of exhaustion by about 3pm every day, sometimes I’m able to shake it off sometimes I have to give into it. Pain off the scale and stiffness is bad too so the answer to your question is who knows if they feel the same or different at the moment mine is constant. I guess only checking scans from one year to the next would give you the answer but I’d say if your R.A. isn’t well controlled then they’re probably very similar.
Thank you for your reply, Leics. Oh the burning/fire pain is just awful, isn't it? It seems there are a few of us in this thread who get the symptoms without necessarily having the blood markers. I am going to read in more depth I think, before seeing the RA nurses/consultant. All the best x
Well in my experience you have to be lucky enough 9/10 to have a rheumy nurse or consultant who looks at the bigger picture and doesn’t just rely on blood results. I’m lucky to have such a consultant now who treats me as an individual, but it hasn’t always been that way.
My experience with a flare is extreme fatigue (though feels somewhat chronic and I would say is my most troublesome symptom), huge brain fog, dull achy joints, slurry words from fatigue and a feeling my fingers are going to pop off. Very stiff. I’ve never had extreme swelling (except big toes), or hot joints or redness. My crp inflammation markers are almost always very good (read it does not show up in crp for everyone) but my rheumi csn feel the slushing of inflammation in my wrists for eg. It is a bit crazy-making and feeds my denial issues. I feel like I have been in a non-stop flare since starting barcicitinib 2 mg. 4 months ago. I’m relieved she believes my pain even with totally great crp levels. She vascillates between diagnosis of Sero negative RA snd psoriatic arthritis (I have zero psoriasis). It’s all quite confusing isn’t it?
I hope in time you really get good at reading your body. I also believe food can have a significant impact as well. Best wishes to u!
The fatigue is so debilitating. I have noticed I get extremely cold, like to the bone, before I have one of my 'pass outs' due to fatigue. Is this something you've had? I'm glad your consultant believes your pain levels - I don't know about you but I feel, well not quite like guilt, but like I am a fraud if my bloods come back within normal range, even if i have photos showing the nasty swelling. That does sound awful since you started on the Barci. Have you not had any benefit, and how long have they said to give it before you may feel a change in your symptoms? All the best x
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