Hello, I'm newly diagnosed with RA after a couple of years of chasing a diagnosis. One of the first questions from the rheumatologist who diagnosed me was "which joints hurt?" My immediate response was "all of them," and she actually rolled her eyes.
Okay- to be more specific-fingers, wrists, elbows, shoulders, hips, knees, ankles, heels/soles of feet, and toes!
Since the diagnosis, multiple healthcare professionals have asked me the same questions about which joints are affected. Am I an anomaly in that more than just a couple of joints are affected? The severity does seem to move from joint to joint but at this point it feels like there's constantly at least some level of discomfort in most of my joints. It feels like the perception from others is that I'm exaggerating my symptoms.
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No, I'd say you're not an anomaly by any matter of means. All of us suffer to different degrees, feeling it in all or many joints, at different times. Just the nature of the disease, I fear.
It's unfortunate that medical professionals maybe don't seem to hear that.
I too suffer with every joint- must of the time and it is something in order to prevent irreversible damage, needs to be taken on board by our rhuemies?!
I was diagnosed in 2014 and since then I have had both hips replaced ( together at same time) both knees replaced ( again, at the same time), operations in feet and toes wired etc and I'm
Waiting to have my elbows replaced .
I do wonder if doctor had heard that yes, all these joints were agony and moved more readily whether I may have sustained less damage?
However, hopefully you are early in the progression of the disease and they will identify a suitable, effective treatment plan for you that will slow down the disease and ease you into remission .
Marie, thank you for your comments. Sounds like you've had a tough road! I truly hope that the surgeries result in a better quality of life and that your disease becomes more manageable going forward! I don't understand why every doctor I see seems so skeptical, especially since my disease is seropositive.
Yes, I think I've caught things relatively early. A treatment complication is that I'd like to get pregnant soon. I'm in my early 30s and want to have at least one child. Since I don't know what lies ahead with my disease, it makes sense to try for that now rather than waiting. Especially since pregnancy gets more difficult after 35 as it is (so I've heard). I'm on plaquenil since that's the safest treatment with a potential pregnancy. It's slow-going and I haven't seen any improvement yet, but I'm very hopeful that it will become more effective over time.
This is funny in a way because Radiogirl and I were having a similar sort of exchange in the comments of her recent post: healthunlocked.com/nras/pos....
I think it depends. I'm hoping that the ?PsA is limited to my hands and that the problems elsewhere are a plausible coincidence, IYSWIM. E.g., I fractured one ankle and ricked the other earlier this year - so, it feels reasonable that that accounts for the foot pain. I was born with multiple vertebral anomalies in my neck and a scoliosis, so I tend to think that any stiffness or pain there is related to that (as it usually has been through my life) rather than a manifestation of PsA (as the rheumatologist thinks it might be).
Longwinded way of saying that I don't think reporting problems in a number of joints triggers disbelief - it can be a way of flagging up different levels of involvement. And I'm still hoping to learn that the ?PsA is limited rather than extensive in my case.
Thanks! I guess that's a better way of looking at it- if there are some joints that consistently hurt MORE or have degraded function more than others it's probably a red flag that those joints have sustained more damage. Another reason for the skepticism I have encountered is that I don't present with a great deal of visible swelling. The swelling is a bit more subtle for me. I can tell when I'm swollen but it's not like some of the pictures I've seen. I actually suspected PsA for quite some time as my understanding is that visible swelling is less common with PsA, until I eventually tested positive for RA markers.
I hope your PsA is limited to your hands as you suspect, but it sounds like you have other significant chronic health issues to manage regardless. I wish you the best in any case- that you can find ways to effectively manage your disease and be at peace with whatever happens. I'm still trying to work out the frustrations, but I'm sure I will get there.
It's been all my joints for me but different ones shout louder at different times! And for many years they all went prettty quiet.
I managed without drugs through pregnancy and for many years afterwards. I have always used diet modification and acupuncture or osteopathy/ chiropractic to help my body fight the disease. But have had to use drugs too, am on humira at present.
One rheumatologist (male) even suggested getting pregnant as a treatment option. I was single at the time and not impressed. Hope you find pregnancy hormones help you too!
It's a question of finding the right therapist. I find it's not so much the type of therapy.but whom the therapist is...I swop depending on which therapist is the right one for me at the time. And also what the problem is I'm trying to address.
For a long while acupuncture was helping...at present I'm trying cranial osteopathy, as for my current problems acupuncture isn't working. I also see a mctimoney chiropractor regularly.
Best to go to someone recommended by someone you trust. And also trust your instincts. Don't go to anyone you don't feel confident in. Make sure they have relevant qualifications.
Luckily my employers offered a health insurance which pays for alternative therapies...it's been very useful...
I know how you feel. I also have the same pain in the same joints. I'm currently taking Tramadol for pain, but it doesn't work. So I now take Tramadol and Tylenol for pain, until I get back to my doctor. Hope you feel relief soon.
You sound very similar to be. I'm 34, seronegative RA diagnosis, and have joint pain in mostly shoulders, knees, wrists, hands, fingers, especially thumbs, feet, and soles of my feet and so on and so forth!!! Of course it's possible to have many joints affected... It's the nature of the disorder!! Don't let your doctors make you feel like you are exaggerating... They have no idea what it is you are feeling unless they go through it themselves. I thought I understood what bad pain was (herniated lower back disc) until I was literally crippled by the onset of RA. Thankfully, Prednisone as horrible as the side affects are, gave me my life back. Now, I've been on methotrexate for a month. Trying to taper the Pred, so not sure how I'm responding to the metho pain-wise, except that I'm losing a lot of my hair. Rheumy said I would need to stop it if I were to to try to get pregnant. But seeing that my life has been turned upside down right now...I think I will pass on pregnancy in this lifetime. I wish you all the best and please keep in touch...I hope getting pregnant will help allay your symptoms if not for good, at least temporarily.
Thanks Jess, yes it sounds like we have similar cases. I just recently tested positive for anti ccp so I guess I am seropositive now, but otherwise it sounds pretty darn similar.
I know what you mean about passing on the pregnancy. I have been thinking a lot about how difficult it is to manage everyday stuff with the levels of fatigue and pain that I'm dealing with (the fatigue is so extreme sometimes). I'm nervous about being able to care for another human being with the issues I have right now. Fortunately my husband is very supportive and I know he'll be heavily involved in child care if we do have a baby. I know I'll have to rely on his support, but I'm hoping that things go into remission during the pregnancy at least.
How bad are the side effects from the prednisone? I've been thinking about asking my doctor for something to supplement the plaquenil since it takes so long to take effect.
Honestly, Prednisone has been a heaven-send for me. It reduced my pain SIGNIFICANTLY...and gives me a ton of energy (guess I am one of the lucky ones!) I have been extremely careful with my diet since it can cause significant weight gain. (Have taken once before 12 years ago, and I blew UP!!) But this time around, very limited carbs, I dont add sugar or salt to anything, avoid fried foods...you know, the obvious and you should be able to manage your weight.
It is so weird how people can respond so differently to a medicine. But typically...Pred causes a ton of weight gain, causes sluggishness, something called "moon face," and a hump of fat on the back of your neck. Some people have said that it causes mood swings, sleep problems, increased heart rate (which I notice sometimes), dizziness, stomach pain---the usual side affects, I believe with most meds. And after prolonged use, more serious side affects...conditions that mess with your organs, such as your liver, but were talking years worth of use. But if you choose to take it temporarily (with your doc's consent, you may very well be the type that it totally helps out--and at least you can have SOME relief. I feel about 80% well with it).
I just had my check up with my rheumy last Thurs and as I was telling her about my hair loss with methotrexate, I asked about Plequinil and she said that it is weaker than metho, so doesn't want me to switch to that, but if in 2 weeks I am still disturbed about my hair loss, I have a lot of other options to try. So maybe you can ask your doc about a stronger med? If you are handling the Plequinil well, you may also respond well to others too.
From what I have read...it is very tricky, and such a trial and error process, each med response being unique for each individual. And the worst part of all is how long it takes to kick in!! 1-3 months!!
I have been tapering off the Pred very conservatively, by 0.5 mg every few days, because doc wants me to get off of it since we wont know how I am responding to the metho. It makes me nervous because maybe I will go back to being a wreck without it. But so far, pain has been completely manageable. Currently, I am on 13.5 and need to get myself down to 5.
About the pregnancy thing...please don't let me influence you in any way!!
I am okay with not having children, and us being in our 30's, I can understand if you do not want to wait too much longer, seeing that it gets a little more complicated as we get older. You should have a serious discussion with a doctor who will not roll his/her eyes (jerk!!), to know what options you have and the possibilities of what may occur (both good and perhaps negative). At least you will make a more informed decision. Also, it is great to have a supportive hubby...and it sounds like you do!! So that's a major plus! Mine has also been a complete, and absolute support for me as well
I'm here if you need me. Keep in touch. Wishing you well
the unique thing about Rheumatoid is that joints are affected symmetrically.
I don't understand why they rolled their eyes.
Maybe instead of saying everywhere, say specifically. Like both my knees, both my wrists etc.
In Australia, to qualify for Biologics we must have more than 28 joints affected. Which isn't all that many when you consider each finger has three.
The question they don't seem to ask is about bursas. Earlier this year both my hips started hurting a lot, and then both sides of my bottom. A bit hard to explain.
The GP showed me a picture of the pelvis and the two lower points have bursas as do the hips.
I have had injections in finger joints that have suddenly become swollen and painful. I was too mortified to ask my rheumatologist to give me cortisone injections there so just got him to do my hips and I put a heat pack in the other sites.
It truly is an awful disease, and as I go along the road I slowly realise this more and more.
Interesting post. I'm undiagnosed since my blood tests keep coming back negative, though there's a family history of RA. I think part of the problem in my case - with doctors not seeming to believe my pain - is that I've had severe pain in many joints for several years now. Hence, they've given me a diagnosis of "fibromyalgia" which I don't think is correct. In my case, the pains started in my knees and feet/toes/ankles. It's now spread to my shoulders, neck, upper spine, and - more recently - to my hands/fingers and elbows. I have an appointment coming up next month at a world class rheumatology department in a neighbouring city, so I'm really hoping they'll take me seriously this time. It may not be RA - I have skin and "dryness" problems too so suspect other possibilities like PsA, lupus or Sjogren's - but I'm certain there's something auto-immune going on inside my body in order to cause all these problems.
Good luck, Bucklece - especially with your plans to start a family.
It is very possible that you may have a combination of things. I hope you get all the answers you need at this upcoming appointment and if they seem to be blowing you off while you are at your appointment, I suggest you be aggressive with them.
From my journey, what I have learned is that usually, with Fibromyalgia, there isn't inflammation. Have you had your ESR and CRP tested? There are also very specific blood tests for Lupus (SMITH, RNP), etc. Good luck with your appt. Let us know how it goes!
Hi Jess - thanks for your reply. Yes, my inflammation markers have been consistently moderately high for many years but this has always been put down on my record as "unexplained pain and swelling". My last rheumatologist said that it would have to be much higher than that for RA to be diagnosed. But the reason I now have another referral to a different place is because there was a locum at my GPs surgery in the summer who did some research at this other place into something called "enthesitis". He suspects this may be what I have - and this could explain why the inflammation markers are only moderately high rather than sky-high, and why nothing is showing up on X-ray or scan. I'm pinning my hopes on this new place finally giving me a correct diagnosis, even if there isn't much they can do about it.
I've had tests for both Lupus and Sjogren's done by the other rheumy. I'm not sure I trust him to have come to the correct conclusion though (ie. he says I haven't got either of them). It's horrible when you lose faith in your doctors.
Thanks again. Once I have this next appointment, I'll report back on here about what (if anything) they find.
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