So I started having a newer symptom that has persisted. It started out with pain in my toes in my right foot. Just randomly. Now I’ve started noticing the pain when I’m walking and those toes (not so much the big or very small-but the 3 in between and especially the second one) Its on and off happening several times a day. But there is the pain-but absolutely NO swelling that I can tell. I’ve been wondering if it will just go away or keep on. Has anybody had a joint that persisted with pain but no swelling. Or start like that and then the swelling came later-or is it vice versa?
I don't get very much swelling. If I do it's quite minor. But swelling, pain, tenderness, etc. none of it actually translates into damage from what I understand. You can be getting damage without pain or swelling and vice versa. Just make sure your rheumy knows which joints are hurting and how often.
I find I get the pain first then the swelling, especially in my digits. Or maybe you have just bruised it and it is simply that?
Well the pain isn’t always there. Like it hurts randomly. So a bruise would hurt all the time…plus I didn’t injure it. The pain is getting to be more often…idk. When my mcp joint hurt. Which was what originally raised questions-i kept thinking that maybe I hit my hand on something in my sleep-lol (before I was diagnosed)-it was pain then swelling. But all in the same day. This has been lingering on. I guess time will tell…
There isn't always "swelling" with pain.... We often think that inflammation and swelling are the same, but they are not. Inflammation that comes with PsA is often difficult to detect. That's why so often MRI's are used as help in diagnoses. Even then it can be missed so they are doing more and more MRI studies with various contrast agents. The inability to find "inflammation and document it even though the Rheumys know its there is one of the reasons dx can be so difficult.
Pain WITHOUT swelling is the "bad kind" and the kind you learn to fear the worst. If there is noticeable swelling, it may not make the pain any less, BUT usually there is a bio-mechanical cause which can be quickly, relativley :-), dealt with using anything from single malt, heat, ice, topical NSAID's or even aids gloves splints, orthothics, a cane etc etc. As Emma mentioned damage comes from inflammation. I don't mean to split hairs with a definition of terms but there is a difference. As we travel further on this road, we learn a lot about "pain" and eventually how to distinguish today's pain from yesterdays giving a bit more control of this "thing"
Thanks everyone. I really still think I’m in a state of denial. Since my diagnosis a little over 2 months ago. I had decided not to do meds for right now. But think in the near future I might need to re consider. Not because of the pain-at least at this point I’m dealing. But the damage part is starting to scare me-and feeling pain in new areas is not a good thing!!
I was like that this time last year. I was optimistic that by changing parts of my lifestyle that I could overcome it without medication and I think maybe you need to do this too. As it happened I couldn't control PsA and am now taking the drugs that the rheumatologist suggested a year ago. The eternal optimist is still within me and I think that if I get it under control then I can come of the MTX...
In summary, try other things (lifestyle changes/holistic remedies/taking propolis etc) and see if it improves it. If it works, great. If not then at least you know you've done what you can!
The old adage is true in regards to an ounce of prevention..... You may stay the same for years or as the Poster Boy for Enbrel wake up one morning and not be able to get out of bed. The first lesson, as you have already done, is deal with it (although its one I constantly need reinforced) The damage is the scary part. Not doing meds isn't a bad decision. Its one that leads to a good decision I'm on another board, and I swear some of those folks are walking a pharmacy. Every issue that comes up they want a pill for and can get down right angry if there isn't one. (also one of the problems my rheumy says makes her job so difficult) These folks are constantly miserable and constantly "A VICTIM" Everyone has to decide what their normal is, but one thing I have learned after the last 20 years or so is NONE of it works unless you are in charge and manage your disease. I would suggest everyone (and especially those just starting treatment0 take a Stanford Self Management Workshop (Better Choices Better Health) or similar offered by most larger medical enter Chronic Disease and Management programs. But what ever you don the one KNOWN is early management and treatment mitigates permannet damage.
FWIW my med program is pretty simple Enbrel every days, Dicloflonec 2X daily. During a huge flair I will use some muscle relaxents at night only (if for no other reason than to sleep) I occasionaly will take a 4 dat burst of predi (no tapers) And that is it. NO pain meds as they really don't address the pain but just dull your senses to it. I do stretch routine every morning and about 15 minutes of yoga type exercises at night and a walk around noon. I have a nice heating pad and some foam wedges for my bed. I have a disabled parking permit that rarley use, a cane and a wheel chair. Its my program and it works for me. I'm not suggesting it works for anyone else. The thing is its MY program. To vary even slightly is a really big thing and not take lightly. To take every suggestion and/or drug offered to me by MY team can chenge things and my control all to easy.
karynailes1984 said:
Thanks everyone. I really still think I'm in a state of denial. Since my diagnosis a little over 2 months ago. I had decided not to do meds for right now. But think in the near future I might need to re consider. Not because of the pain-at least at this point I'm dealing. But the damage part is starting to scare me-and feeling pain in new areas is not a good thing!!
tntlamb said:
The old adage is true in regards to an ounce of prevention..... You may stay the same for years or as the Poster Boy for Enbrel wake up one morning and not be able to get out of bed. The first lesson, as you have already done, is deal with it (although its one I constantly need reinforced) The damage is the scary part. Not doing meds isn't a bad decision. Its one that leads to a good decision I'm on another board, and I swear some of those folks are walking a pharmacy. Every issue that comes up they want a pill for and can get down right angry if there isn't one. (also one of the problems my rheumy says makes her job so difficult) These folks are constantly miserable and constantly "A VICTIM" Everyone has to decide what their normal is, but one thing I have learned after the last 20 years or so is NONE of it works unless you are in charge and manage your disease. I would suggest everyone (and especially those just starting treatment0 take a Stanford Self Management Workshop (Better Choices Better Health) or similar offered by most larger medical enter Chronic Disease and Management programs. But what ever you don the one KNOWN is early management and treatment mitigates permannet damage.
FWIW my med program is pretty simple Enbrel every 5 days, Dicloflonec 2X daily. During a huge flair I will use some muscle relaxents at night only (if for no other reason than to sleep) I occasionaly will take a 4 dat burst of predi (no tapers) And that is it. NO pain meds as they really don't address the pain but just dull your senses to it. I do stretch routine every morning and about 15 minutes of yoga type exercises at night and a walk around noon. I have a nice heating pad and some foam wedges for my bed. I have a disabled parking permit that rarley use, a cane and a wheel chair. Its my program and it works for me. I'm not suggesting it works for anyone else. The thing is its MY program. To vary even slightly is a really big thing and not take lightly. To take every suggestion and/or drug offered to me by MY team can chenge things and my control all to easy.
karynailes1984 said:Thanks everyone. I really still think I'm in a state of denial. Since my diagnosis a little over 2 months ago. I had decided not to do meds for right now. But think in the near future I might need to re consider. Not because of the pain-at least at this point I'm dealing. But the damage part is starting to scare me-and feeling pain in new areas is not a good thing!!
Yea I like being natural. I normally don’t take meds for anything. No flu shots, no antibiotics, only motrin for the occasional headache. Its hard for me to wrap my head around-taking meds for the future. Meaning I can deal with the pain I feel right now-and it may not get worse. I might never have damage. But just in case I progress to that point-i might have to take something. The meds plain and simple scare me. I still want more kids etc. My dr was really supportive with my decision. I don’t have any damage at this point and that is why he was fine with it. I agree in a general statement we are a over medicated society. And neither me nor my fam will be classed in this group. No judgment on others who don’t feel this way. This right now just works for me. And I vowed to never play the victim. Whatever happens in my life is meant to be that way. 
but like everyone I do have down days. Or times when I’m scared about what the future could hold for me. Time will tell.
I know what you mean! I’ve been carefully eating organic veg, drinking organic milk, eating free range & organic meat and then ruin it all by pumping myself full of toxic mtx! Ah well, needs must.
Exactly - sometimes the BEST treatment is "watchful waiting" and learning to play the hand we are dealt before throwing back and drawing again
karynailes1984 said:
Yea I like being natural. I normally don't take meds for anything. No flu shots, no antibiotics, only motrin for the occasional headache. Its hard for me to wrap my head around-taking meds for the future. Meaning I can deal with the pain I feel right now-and it may not get worse. I might never have damage. But just in case I progress to that point-i might have to take something. The meds plain and simple scare me. I still want more kids etc. My dr was really supportive with my decision. I don't have any damage at this point and that is why he was fine with it. I agree in a general statement we are a over medicated society. And neither me nor my fam will be classed in this group. No judgment on others who don't feel this way. This right now just works for me. And I vowed to never play the victim. Whatever happens in my life is meant to be that way. :) but like everyone I do have down days. Or times when I'm scared about what the future could hold for me. Time will tell.
Well that’s the thing right now I would consider my pain isn’t that bad. Its there and it does hurt but its not so bad I need to take meds. I would consider myself to have a high pain tolerance. That can probably be a good and bad thing. The dr did say if my pain was so bad I would probably want the meds. I definitely believe that to be true. I’m pretty sure I will get there one day. : /
I put it off too Esther. You can only get shot up so many times before the joint needs replaced. Every one of the TNF's has a life span (sometimes months some times years) NSAIDS, MTX etc all have an effect on the liver Remeber they take liver scans regularly but STOP the meds until damage occurs.
The other thing that people who have had chronic pain for a while learned is many of the meds don't work after a while. They are now learning (mostly in the last few years)that with PsA (especially the AS types0 there is often a process called "central sensitization" In a nut shell what happens is that pain is often treated with various pain meds The difficulty is many of these meds don't actually treat the cause of the pain but mask it, compensates for it, or cover it up. The pain is still there but if not adequately treated, those pain signals are sent repeatedly (you just don't know it because of the pain meds) -- which leads to changes in the central nervous system, making it more and more sensitive. Over time, even the gentlest touch can become very painful. (At which point you start getting the wierd stares, "whats wrong with you and the ever popular "Its in your head") Eventually the need for pain meds increases to the point where no more can be safely given or they have no effect.
I know it sounds crazy to some but learning to deal with the pain and make it a normal part of life works too. Thats not to say one shouldn't do EVERYTHING to avoid joint damage they can.... BUT that should be the goal. The simple fact is none of us will ever be "normal" again.
trees said:
I get pain without swelling all the time. My crazy pain I call it. The rheum believes me that's all that counts. I believe you. Unfourtunatly it is real. It may go away it may move onto another joint. I can honestly say the joint damage is scary. I have 2 TKR;s as proof . It may be in your best interest to reconsider your decision to take meds. I understand why you would not want to . If my 5 weeks off humira is any indication of what my life was like before meds. I am staying on meds for life. I just ok'd a steriod shot last week and it was thebest decision I have made in awhile. 4 years ago I swore I would not do intramuscular injections of steroids now I won't likely turn down another one. Depends on how much pain you can tolerate. But i gotta ask you why would you want to suffer? A question my rheum asked me when I first started on MTX.
Esther
Yes, of course you can have pain without swelling. My feet are very painful, but don't look that swollen. An MRI of my foot, though, shows bone marrow edema -- swelling inside the bone. I think that hurts.
I hate my meds, and I have a pretty high pain threshold. But like trees/Esther, I'm really scared of the joint damage. I too have 2 TKRs, and I believe that is the result of PsA, even though I was diagnosed long after my knees were replaced. Now it's my feet ... and if this disease destroys the bones and joints in the middle of my feet, there will be no replacement parts. I will not be walking. So I take those drugs, as much as I hate them.
Seenie
Hi,
I had the same philosophy as you. My mum studied naturopathy. I took nothing. When I was diagnosed I tried every alternative option available. Unfortunately it cost me a fortune and nothing helped. What it did do was erode my confidence in anything to work. My Drs keep telling me they can help, and I will get better, but I have heard that so many times now that I dont believe them. I want them to be right but so far nothing is helping and I swallow so many pills and supplements a day it is ridiculous. Oh well, such is life. So hopefully you can have a more balanced approach than me. Do what you need to do. My Dr said to me to stop beeting myself up about it. She said taking prescription drugs is not that different to taking herbal remedies. They are well researched and controlled (ish). She said look at taking meds as an opportunity for healing. That was what I needed to hear. Don't beat yourself up for needing to use phamracuticles if you do. I hope you don't need to but if you do, be at peace with that xo Shel