My Rheumatology clinical nurse said to me " joint damage and pain are two separate things"
I would be so grateful if someone can explain this statement to me, because in my mind pain is what occurs when we burn ourselves or cut a finger or break a bone. So, if we have a flare up of RA and there is inflammation, redness, swelling and pain, how can the pain be separated out as not connected or two totally different things ?
Wow, what a question, looking forward to seeing the replies lol, to me personally sounds a load of old tosh lol BUT. I could be wrong.
Good luck.
Philip
Difficult to put into words but here goes. If you get joint damage the bone surfaces becomes ragged and rub painfully together pain. Replacing the joint that rubbing crackly pain goes but when you flare the synovial fluid inside the joint gets flooded with blood cells Which does cause internal pain due to swelling and heat and the joints being mm ... Over full? Does that make sense? So you can have different joint pains such as rubbing grinding stabbing or stretching or pins and needles and they can all suggest different problems. Well that's the way I think of it !!! Any other ideas folks !
Thank you for explaining so graphically the pain from joints already damaged, it's almost too painful to visualise, but it makes sense !
Ouch!!!! But we all know it too well here xxxx
well put Allanah!
i asked my ra doc why i still have so much pain when not in a flare and he said the pain is from damage already done which is not what yours says but to me makes much more sense x
I did say it's difficult to explain but sorta had a go at explaining how I understand it xxx just hope one day they can get rid of it all !!
Wouldn't that be great, to get rid of all pain !!
Hmmm, interesting question!
I think that what your nurse meant was that you can have a great deal of pain but this doesn't necessarily mean you have joint damage or that joint damage is occurring . As Allanah says, there are lots of different types of pain caused by the swelling and inflammation triggering the pain receptors in tendons,muscles,joints etc.
Obviously if you already have damage in your joints they will really painful as well, but that grinding,rubbing pain that Allanah described.
Not much fun any of it is it? X
Perhaps I should explain the context in which she made her statement about pain and damage being two separate things.
In April I made a decision to stop taking MTX after discussions with GP and clinical nurse because it was affecting my eyesight. The nurse warned me that I could incur more bone damage as a result. She said "don't confuse pain with bone damage, because they are two separate things".
Her statement has had me puzzled ever since, but the thoughts you've shared have provided some clarity. Thank you.
It's not much fun, any of it, but I find it does help a bit being able to discuss and have a better understanding.
Have a nice day, as pain free as possible !! June xx
Hi
Well I think in that context she meant even if you aren't feeling any pain, joint damage can still be happening. Then I guess it would depend on how much damage it takes before you feel permanent pain from the joint, as Helix said, painkillers just block us from feeling the pain for a while by interrupting the pain pathway to the brain, they are not actually correcting what is causing the pain in the first place and they are not affecting this disease.
Basically sounds like she was trying to convince you to continue with the dmards which hopefully are actually trying to deal with the disease and so stop joint damage from happening. X
Yes, I have no doubt that the nurse would have liked to persuade me to continue with MTX, perhaps a smaller dose than the 22.5 mgs I was on, but she conceded that having to decide between eye sight and joint damage is a difficult decision to make.
I have also been on Enbrel injections for the last 14 months though, so I'm covered with that, and it's a good test for the Enbrel, to see how well it does on it's own !
SO, how about this then...... I have had more painful joints this last couple of months (partly my reason for this blog), but my bloods show the lowest ESR levels at 6, since being diagnosed over 4 years ago. I can only think that the Enbrel works better for me on it's own !!
Wow, an esr of 6! How I would love to see that on my blood results!
Don't envy you that decision re eyes or joints but seems like you have it all covered now so that's great.
Am pleased to hear Embrel is working so well for you on its own, would like to think if I go down this route then I can either come off mtx and lefl or at least reduce doses at some point.
At least you know your pain is not from inflammation which is good news isn't it? X
Yes I suppose also add in " nerve pain" and chronic pain which is when your body recognises pain that is not there cos u have had it do long , it's a good thing pain clinics are around !
Yes allanah, nerve pain can be very debilitating, as my husband would agree, he has a lot to thank the pain clinic for. We are a right painful pair, aren't we !
And, I agree that we to get used to pain and hardly notice it at times, until it steps up a gear, I suppose that could be "mind over matter" literally.
When I was a nurse i had been taught that pain is what the patient says it is!
I think Magglen's answer is the way it should be! However you having explained the context I wonder whether your nurse was trying to say something slightly different in that it is possible for the disease to damage your joints without you feeling it. If you have painful joints you can take anti-inflammatories and pain killers that dull down the pain so you think it's all under control. But underneath that the disease is still chomping it's way through your joints, slowly and quietly but still doing it albeit very, very slowly as the inflammation is damped down with NSAIDS.
Early on, before I was diagnosed I had occasional pain in my feet. Which GP said was arthritis and to take ibuprofen and paracetamol. Which I did, and carried on as this took the pain away. However, other joints got inflammed and eventually after about 6 months the GP conceded that something else was going on and sent me off to a rheumy. Well the end result is that I now have damaged joints in my feet as although painkillers kept me going they didn't actually do anything fundamental to the disease to stop it eating me. The drugs like MTX are DMARDS ie they are disease modifiers so change the processes.
Just my way of thinking about it...but perhaps she was trying to suggest something along those lines?
Hello helixhelix,
I identify with what you have said about the damage caused in the early days before diagnosis, because the same happened to me, hence my damaged ankles and feet. I distinctly remember being in excruciating pain by just putting my feet to the floor, let alone put my weight on them in those early days.
Ah but, you could be quite right about joint damage occurring quietly without knowledge of it, as you say "chomping away at joints without us having any knowledge of it going on"
Without a doubt DMARDS do a good job of limiting the damage, once you get the treatment that best suits.
I find the inflammation pain feels like a hot burning, stabbing pain. The pain from joint damage is something I know very well, every joint in my body is damaged. It is a gritty, grating bone pain, which can press on the nerves. When I had my first knee replaced some of the bone had broken off with joint damage, the pain was similar to a bone fracture. No DMARD, painkiller or steroid helped, that was unbearable.
I'm so sorry to hear how difficult your life has been with this awful condition, you would certainly know the difference between inflammation pain and gritty grating bone pain that allanah referred to.
I hope you are doing better since having your knee replacements.
Yes knee and hip replacements have helped so much, I would never have walked again without these operations. The knee replacements still get really swollen and painful when the inflammation is out of control, I still have steroid injections into the knees from time to time. The hip replacements are simply fantastic, no pain, wouldn't even know they are there.
I'm really pleased that things are looking up a bit for you, it must be amazing to be so comfortable hip-wise. What would we do without the odd steroid injection ?
I sort of understand that to mean, joints that are damaged, cannot be relieved byDmards, but genera rally Dmards can slow the progression of RA.
Where there is already joint damage ,for me wrists & ankles, I need strong painkillers by times, and in the long run surgery. To halt the progression of the disease itself I need immunosuppressants, which at the moment are MTX, plaquinil, & Humira. The immunos may help with pain, but they are not pain killers. Gosh, am I sort of right? That's what I think anyway
. I often see people posting mtx helps their pain, but that never happened for me. We are all so different with our experiences of this disease. A friend recently told me that a Consultant told her RA cannot start in the ankles/ foot!!! What!!!
Interesting replies. Best wishes to everyone.
Also, my understanding is when inflammation occurs, damage is also occurring. It may notbe bone, but can be tendons, ligaments etc. when I had my ankles MRI'd after a few years. Of bad pain, ligaments & tendons were absent or diminished to useless, therefore I needed an ankle fusion or a tendon transfer to walk again. Luckily had a successful ankle fusion, need a fusion on the other ankle now.
Thank you for your input Zigzager,
Yes, I think you are quite right about immune suppressants, I have been on them for many years, long before my RA was diagnosed. I had chronic urticaria/angeoadema for over 25 years, controlled of course with immune suppressants. Incredibly, my urticaria disappeared when the RA reared it's ugly head, it obviously turned it's attention from my skin, to my joints.
My nurse has said to me that MTX does nothing for pain and is always encouraging regular doses of paracetamol each and every day whilst pain is a problem. She regularly asks me how many packets of paracetamol I buy each week and usually follows my answer with "that is not enough" !! So yes, I think you are absolutely right, bang on the button, as the saying goes.
I worry about my own tendons, because the pain is always there in my right ankle and up my leg into the muscle. I also get it in my left leg, but the right leg is the worst.
Take care of yourself, I'm glad your first ankle fusion was a success and I hope the other one is successful too. June xx
Reading your reply with interest. I do have RA, but my daughter has urticaria, and has since a child (she is 47 now). Is this an autoimmune disease then?
Yes it is an autoimmune disease, mine was triggered by penicillin initially and became worse when I was prescribed some strong antibiotics after a major operation.
Eventually I was allergic to so many substances that I was referred to an immunologist in Leicester who got it under control with drugs, and it was the Consultant immunologist who diagnosed suspected Rheumatoid and as I said, no more urticarial from that time 4 years ago.
There are other autoimmune diseases which are also linked to RA such as Colitis which is a bowel disease, one of my brothers has had this for years. My youngest brother who lives in USA has suspected rheumatoid and is just going through blood tests etc.
I hope I have helped a bit by sharing this info.
Yes you have, thank you.
Hello
There are two groups of pain.
Acute is i you have toothache or you stump your toe, something like that. Your body is telling you that something needs attention, it will get better, with treatment
Chronic pain is like damage to bone RA or OA the joint will never recover, chronic pain is not productive.
your body and effected area will be felt at different levels by patients who are suffering the same problem. Chronic pain is personal . Chronic pain can be end of life, It is treated as such. Some joints can be replaced although the pain will still be chronic the effected part has been removed and a replacement has been given Although here again the pain will be chronic as you have lost that bone and an artificial adaptation has been provided, the adaptation will possibly need replacing.
Good Luck
BOB
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