Since I've joined this group I've been reading about how some people are truly suffering. It breaks my heart. However, then I wonder that perhaps I have a mild case. I was diagnosed by my family doctor as having PsA. I do have 3 separate patches of it, all started in extreme stressful periods of my life. They never really go away, barely controllable. And my joints..yes, I do have some pain but mostly it is discomfort. My fingers are not sausage-like but the joints are deformed and the tips are starting to turn inward a bit. But very little pain. I do have some discomfort in my neck, spine and various joints throughout my body. And at times, my hips ache something awful, though usually when I am sleeping or trying to sleep. But in the day I have no hip pain. My eyes are affected too but usually just a morning of discomfort, never more than that, and then only rarely. Occasionally, once or twice a year, I'll have what I call an attack, usually lasting a few days in which joints in multiple areas ache, I'll feel flu-like, and really, must spend the time in bed. But as I said, this is only rarely. Other than that, I wake up stiff and sometimes a little sore, and most often with a little stetiching or exercise and an over-the-counter ibroprufin, I'm fine. Now mind you, some 15 years ago when all this started I was in considerable pain most of the time but now, not so much. I am not taking any medication, other than over-the-counter.
Does anyone else have PsA like mine? I didn't have any tests. My doctor just looked at my skin and finger joints and heard about my joint pain and that was it. Is it possible to have a mild version of PsaA?
It certainly is possible to have a mild version! Mine was like yours for about 20 years, and it eluded diagnosis. Stupid aches and pains, for which I took only OTC meds. I was finally diagnosed last year when they discovered that I had erosions in my feet.
Welcome to the group, maplegirl. I'm glad you've joined us, but so sorry you've had to.
I just was thinking when it would be the time to go on meds, that's all. Must say, I am extremely nervous and actually downright frightened about the drug side effects. I've had so many severe reactions to drugs though mostly to antibiotics. And, then there is another problem, living where I do. I live in Southern Ontario, about a 100 miles north of Toronto. I don't know if any of you ever heard about the lack of doctors in Canada, especially in Ontario. It was extreme about 15 years ago. There were not enough family doctors even to serve the population. We couldn't even find a family doctor for about 10 years as doctors felt they were overloaded and weren't accepting new patients. It was horrible. And we had a young family. We'd have to visit the Emergency Department for every little thing. Things have eased up somewhat but guess what? There's not many specialists around for anything really. Waiting times are horrendous to see one, if you are lucky to get a referral. I'm talking months, maybe years, depending on the severity of one's condition. So that brings me to rheumatologists. Talking with friends who have arthritis I've found out there are only about 3 or 4 in the entire area! Crazy. Most family physicians take it on themselves to treat people. I've run into that roadblock with my family physician. She feels confident she can treat me. Oh, I don't know. I don't think so. Find another family physician to refer me? Not really possible. It seems most doctors will only accept new patients if they live in the area. It's not like you can find a new family doctor in another city - you won't be accepted.
I'm just going to have to be more assertive with my physician that's all and demand I be referred. Shouldn't have to be so hard. Also disturbing is that fact that we don't have the luxury of 2nd opinions with so few specialists. It's hard to place one's trust & faith in the hands of overworked and tired physicians. And physicians react by treating patients almost like cattle. There's very little personal attention. One is just a number in a long line of other numbers to treat. And mistakes are made of course. The situation will become worse for sure as we baby boomers get older. The situation is strained to the seams as it is.
Sorry for the venting. Just feel so discouraged, that's all. I'll just have to deal with all this.
Thanks for all your kind remarks. Thankfully, there's a group like this.
I just was thinking when it would be the time to go on meds, that's all. Must say, I am extremely nervous and actually downright frightened about the drug side effects. I've had so many severe reactions to drugs though mostly to antibiotics. And, then there is another problem, living where I do. I live in Southern Ontario, about a 100 miles north of Toronto. I don't know if any of you ever heard about the lack of doctors in Canada, especially in Ontario. It was extreme about 15 years ago. There were not enough family doctors even to serve the population. We couldn't even find a family doctor for about 10 years as doctors felt they were overloaded and weren't accepting new patients. It was horrible. And we had a young family. We'd have to visit the Emergency Department for every little thing. Things have eased up somewhat but guess what? There's not many specialists around for anything really. Waiting times are horrendous to see one, if you are lucky to get a referral. I'm talking months, maybe years, depending on the severity of one's condition. So that brings me to rheumatologists. Talking with friends who have arthritis I've found out there are only about 3 or 4 in the entire area! Crazy. Most family physicians take it on themselves to treat people. I've run into that roadblock with my family physician. She feels confident she can treat me. Oh, I don't know. I don't think so. Find another family physician to refer me? Not really possible. It seems most doctors will only accept new patients if they live in the area. It's not like you can find a new family doctor in another city - you won't be accepted.
I'm just going to have to be more assertive with my physician that's all and demand I be referred. Shouldn't have to be so hard. Also disturbing is that fact that we don't have the luxury of 2nd opinions with so few specialists. It's hard to place one's trust & faith in the hands of overworked and tired physicians. And physicians react by treating patients almost like cattle. There's very little personal attention. One is just a number in a long line of other numbers to treat. And mistakes are made of course. The situation will become worse for sure as we baby boomers get older. The situation is strained to the seams as it is.
Sorry for the venting. Just feel so discouraged, that's all. I'll just have to deal with all this.
Thanks for all your kind remarks. Thankfully, there's a group like this.
Yes, your experiences are typical of what happens in this province. Unfortunately, the situation needs you to be very proactive. Figure out who the best rheumatologist is, ask for a referral to that specialist and let your doc treat you in the meantime. Pick the right rheumatologist, even if you have to travel to see them. It will be worth it.
Nice of your doc to offer to treat you. Ask if she will start you on methotrexate, as that is the first-line medication that the rheumatologist will start you on. See what she says then. My doctor said she wouldn’t give me methotrexate, which I knew would be the first drug that a rheumatologist would start on. Finally, she relented and gave me a very low dose, which was better than nothing.
I’d be asking for a referral to the best specialist clinic I could find, because it’s so hard to change once you are on somebody’s list.
Good luck with this!
Hi Lynn, I sometimes wonder the same. Right now not much hurts, just my hip. So I don't want to seem like a cry baby. I asked my ex-rheumy if I really had this & she said to go off the meds & see what happened. But I didn't because I didn't want the pain to come back. I think it is possible to have a mild case. So take each day at a time.Enjoy.
Yes, I know what you mean. I've been great for quite awhile now though maybe I spoke too soon. My eyes feel funny tonight and I'm really tired, and my knee is starting to hurt a bit. Just went through a period of great stress last week so....stress is certainly a trigger. A friend just lent me the book "Full Catastrophe Living, Using the Wisdom of Your Body and Mind to Face Stress, Pain and Illness". Wanted to get through the first few chapters tonight but tomorrow's another day. Take care too,
meg said:
Hi Lynn, I sometimes wonder the same. Right now not much hurts, just my hip. So I don't want to seem like a cry baby. I asked my ex-rheumy if I really had this & she said to go off the meds & see what happened. But I didn't because I didn't want the pain to come back. I think it is possible to have a mild case. So take each day at a time.Enjoy.
I don't know if this will help, but as I've had this disease since I was 14 and have suffered through some really bad times with it where I have been completely disabled for months on end, I have also been pushed to the point of desperation which has lead me into the hands of an amazing RA specialist based in Newmarket Ontario (partially due to determination of my mother... its amazing what the power of Mom can accomplish!)... If you are 100km North of T.O. it won't be too too far for you.
Please look at this website and show it to your GP The Arthritis Program . Through this program at Southlake Hospital, I was shown all kinds of support from Occupational Therapy to Mental Health to emergency clinics where you can get joints aspirated and injected with cortisone on short notice (They fit me in three days before my wedding! I was able to dance at the wedding which was amazing considering I was wheelchair bound days before!). The Doc I met through this program has patients visit him from all over Ontario. His name is Dr. Thorne and although he is grossly overworked (re: your mention of Dr. shortage), he is the best there is and has chosen to remain in Canada! Woohoo... he is the best really, and not just in my opinion...look him up or at least mention the TAP program to your GP, it changed my life and my outlook on Ontario Healthcare in general.
maplegirl said:
I just was thinking when it would be the time to go on meds, that's all. Must say, I am extremely nervous and actually downright frightened about the drug side effects. I've had so many severe reacUmmtions to drugs though mostly to antibiotics. And, then there is another problem, living where I do. I live in Southern Ontario, about a 100 miles north of Toronto. I don't know if any of you ever heard about the lack of doctors in Canada, especially in Ontario. It was extreme about 15 years ago. There were not enough family doctors even to serve the population. We couldn't even find a family doctor for about 10 years as doctors felt they were overloaded and weren't accepting new patients. It was horrible. And we had a young family. We'd have to visit the Emergency Department for every little thing. Things have eased up somewhat but guess what? There's not many specialists around for anything really. Waiting times are horrendous to see one, if you are lucky to get a referral. I'm talking months, maybe years, depending on the severity of one's condition. So that brings me to rheumatologists. Talking with friends who have arthritis I've found out there are only about 3 or 4 in the entire area! Crazy. Most family physicians take it on themselves to treat people. I've run into that roadblock with my family physician. She feels confident she can treat me. Oh, I don't know. I don't think so. Find another family physician to refer me? Not really possible. It seems most doctors will only accept new patients if they live in the area. It's not like you can find a new family doctor in another city - you won't be accepted.
I'm just going to have to be more assertive with my physician that's all and demand I be referred. Shouldn't have to be so hard. Also disturbing is that fact that we don't have the luxury of 2nd opinions with so few specialists. It's hard to place one's trust & faith in the hands of overworked and tired physicians. And physicians react by treating patients almost like cattle. There's very little personal attention. One is just a number in a long line of other numbers to treat. And mistakes are made of course. The situation will become worse for sure as we baby boomers get older. The situation is strained to the seams as it is.
Sorry for the venting. Just feel so discouraged, that's all. I'll just have to deal with all this.
Thanks for all your kind remarks. Thankfully, there's a group like this.
Well give your family doctor a change to at least tell you her thoughts and her treatment plan, but a rheumatologist would be better.
Don't worry so much about the meds, they aren't that bad. I've been on Enbrel for over a year now without side effects. It sounds though as if you're already having some joint damage. You should be very worried about that.
Hi maple girl. I was just looking over what you were saying. The main reason to go on the medications you were speaking on is for preventive measures, They stop damage to your joints. The main thing you need to find out though is if you diagnosis is indeed correct, only a specialist can do this. I'm in Ireland but the medical system as it's mostly subsidized by the government can be quite similar here with waiting times. As a result we end up with the same issues. My PSA is extremely severe, it's in the more unusual category and in all of my joints including my spine, and thus i have no choice but to go on biologicals. The side effects can be difficult to deal with for some people. Methrexate can affect liver fuction and Enbel effects the immune system (depending on person). However if they are nessicary side effects can be more than managed. Enbel or Simponi which I'm on adjusts to you after a 2/3 months. Methoorexate means taking alcohol from your diet. You do need to see a rhemotologist, because I nor anybody else but a doctor can make a diagnosis. A diary of pain from day to day is always helpful and a list of your symptoms to bring to any appointment. There's no need to suffer if it can be helped. I'm sure we both know that ibroprufin can be fine sometimes but when you're really in pain it's probably not going to be enough. Don't diminish yourself and your suffering because you think that somebody is worse off. You deserve to have your condition treated properly. And be positive and do some thing nice for yourself once a day even if it's only small :) It's the best thing for any of these conditions. Hope things work out for you!!!
Please don’t take this the wrong way, but you are not in a position to decide if you have mild PsA or not, nor is your GP…every body is completely different and have different pain tolerances. That’s why there are specialists in this field. One of the dangers of PsA is the joint erosion that can occur before appropriate treatment is started, but if you have not had the relevent investigations done how will you know? I had symptoms very similar to yours since my early 20s and took ibruprofen and GP gave me anti inflammatories as and when I needed them. Hand and feet x-rays showed bone changes when taken last year, and the pain wasn’t too bad until I went into a full flare. Shoulders have bone erosion too, mainly my pain problems are tendon based which is known as enthesitis. My rheumatologist thinks because I have a high threshold for pain the disease wasn’t treated appropriately soon enough. Since being on treatment my x-rays show no further damage so my advice is please push to see a specialist. At the moment its just your symptoms (pain) that are being treated and not the underlying disease. Good luck
Maplegirl, I’m trying to reach you, but the PM part of this site has got “stuck” on my computer. Can you send me an email address so that I can reach you through my gmail? Sorry for hijacking this thread for a personal message.
And having said that, I’m glad I’ve come back to this thread. Louise and Sybil, you’re right on about pain thresholds. Apparently my high pain threshold has been a barrier to my being properly diagnosed. I went to the specialty PsA clinic in Toronto just last week and a “funny” (?) thing happened during the examination. The doc was palpating and squeezing my finger joints. As she’s squeezing my ring finger knuckle, she looks at me kind of funny. I said “What, am I supposed to say something about that?” She said no, but later said that my finger joints are inflamed and that I should have jumped when she touched them. I felt only pressure, no discomfort at all. That very high pain threshold has, apparently, cost me three major joints (so far). They are putting me on Enbrel now, to try to slow the damage. What my regular rheumie thought was mild disease, is, according to the specialists’ specialists, severe. Sadly, I have a lot of damage.
Sybil, yes, high pain threshold is a very real phenomenon. Years ago I walked up to the counter in Emerge and told them I was really really uncomfortable, and would they please do something about it. Turned out, my gallbladder was ready to perforate. Yup, apparently people in my condition are usually brought in by ambulance, semi-conscious from the pain. The doc “diagnosed” a high pain threshold. LOL, no kidding! He said that if I ever had a baby, I’d have no problems. (Never tested that one. And he also said that I needed to be careful, as a high pain threshold could get in the way of an important diagnosis. And here I am, PsA diagnosed (in retrospect) 18 years after onset, diagnosed as mild two years ago. Three joint replacements and extensive foot erosions later, they now realize it’s severe, and probably has been for some time. Ugh. Yes, I’ve had pain, but never the agony that the severity of my disease would suggest. A mixed blessing.
And he also said that I needed to be careful, as a high pain threshold could get in the way of an important diagnosis. And here I am, PsA diagnosed (in retrospect) 18 years after onset, diagnosed as mild two years ago. Three joint replacements and extensive foot erosions later, they now realize it’s severe, and probably has been for some time. Ugh. Yes, I’ve had pain, but never the agony that the severity of my disease would suggest. A mixed blessing.