Rheumatoid Arthritis (and its variants) :
The downward spiral - - Posted by rhea (rhea), 24 October 2002
I've travelled further on the downward spiral. My left knee is now so horrible Im out of school. I have spent the last four days in bed with the icing machine with the few exceptions of crutching myself to the washroom and back. Thats it. Im feeling quite horrible, and my T2s are not helping much anymore. I'm now just making it through day by day. I can't think of how Im going to get through a years wait till my scope, but I guess I'll manage. Life can sure be hard sometimes. Anyways, I am not able to check my email or IMs as often being as Im almost always in bed. So if anyones wondering where I've went, thats where.
I hope everyone else is having a better time with there knees! Here's to better days!
(((hugs))) to everyone
ps, double (((hugs))) to you Linds. I know you're in a big rough patch too.
Posted by Linds (Linds), 24 October 2002
Hey Rhea, you'll come around. I know that you will... I know this sucks right now, I am in the same boat, except, I am not quite bed ridden. However, it's better to take care of yourself now. Maybe you should look into some better pain managemet. They are sending me back to Physio to try and get this knee under control . It's totally out of control right now and I am loosing muscle tone in that right leg..faster than you can say..it.
it sucks..jill is going to be mad, but it hurts so much, I didn't want to go back. But now I know they are going to make me
Take care and I will talk to you soon
BIG HUGS, wiht super hero pain relieveing powers.
Posted by tazmanian_devil (tazmanian_devil), 24 October 2002
Rhea, I am so sorry to hear how bad things are for you. I wish I could visit you and cheer you up. I think of the changes that have come over you in the past 8 months and I hate it! I'm trying to think of a way to make you smile Rhea. Ok hows this? Hello, If any of Rhea's uncaring Dr.'s are reading this post, you may not know this but you are supposed to CARE about your patients and help them above all else. (((HUGS))) Theresa.
Posted by Helen_uk (Helen uk), 24 October 2002
Cheer up rhea its a bad patch abd we all know how you feel I too have spent the last 2 days in bed my knee collapses everytime i walk on it but have no idea why.
These horrible times seem insumountable at times but we are all here for you
love H xxx
Posted by violin1 (mj/usa), 24 October 2002
It makes me so sad to think that you, who have cheered so many of us when we have been down, are now down yourself. What can we do to help? Do you think that I might be possible to get Dr Fowler to do the scope sooner?
I am sending you all the positive vibes that I possibly can
Take care, Rhea, we all need you!!!
Posted by AC (AC), 24 October 2002
You can't spend a year in bed and not using the leg waiting for your scope. You have to keep your quads as strong as possible, or recovery will be next to impossible from any surgery, especially bigger ones. By laying in bed and not using it (crutches) your quads are going to start to waste away, which will in turn make your tracking worse, and pain worse. A vicious cycle, I know, but you have to do something now, before it gets worse.
You could go back to PT and try and strengthen your quads which might help your tracking and pain. PT might also have some other suggestions for pain management. Worth a shot. If you were not comfortable with your old PT, investigate other ones in the area. I live in a very small town North of Toronto and we have 3 PT clinics alone, so I am sure there are other ones you could go to. If you still don't find one you like, you can find out some exercises that can strenthen your quads and do them religiously every day. I know they hurt, but they do help your tracking.
If that is still not an option you have to contact Dr. Fowler's office and let them know you can't wait a year and you either need to bump your scope up to a much sooner date, or else you need to see the Dr. again for some more suggestions by him on how to live through the next year. If he can't see you or can't move up your appt (considerably), then I would consider seeing someone else. He might be good. But if he isn't available and able to see you in a reasonable time frame, you are just going to do more damage to your knees, and a lot of damage is not reversable! So maybe consider seeing another doctor. Maybe Dr. Fowler could even refer you to another one with a shorter waiting list. Just ideas to keep in mind. I waited so long to get my knees looked at that by the time I did, the damage was done. I really wish I had of done something even 6 months sooner, probably would have made a difference!
Keep these things in mind, keep your head up and do your best to make it to school when you can, and if you can't make it there, study from home. Education is everything in life.. without it, it is hard to get anywhere great. Best of luck. Think positive. Be assertive and tell the Doctor what you need.
Keep us in the loop on how it is going.
Posted by opal (opal), 24 October 2002
I agree whole heartedly with AC. You cannot spend a year in this condition! By the time you get to surgery, your muscles won't be able to recover.
Call OS office and keep calling until they come up with another option to that kind of a wait!! There are MANY qualified OSs out there, and it may be time to find an alternative.
Keep your chin up and start nagging someone!!! LOL
Posted by hmaxwell (Heather M.), 24 October 2002
You said you were waiting for your diagnostic scope and that was next September. You also said Dr. Fowler thought you needed a TTT, which is open surgery....is he going to do the TTT at the time of the scope if it's necessary? That wasn't clear.
If not, you definitely can't wait 2 years to get this taken care of!!!
I've been told by a 2nd opinion doctor that I need a TTT as well, and believe me, I just want to get it over with. I'm walking with one crutch again because I can't take the pain and popping otherwise. I can't imagine doing this for the next year....there has to be a better way.
You've shown how very creative and persistent you can be in getting the very best out of Canada's public health system (even diagnosing and referring yourself to the best of the best!) That took guts and determination, and those two things will see you through to getting a solutin for your current situation, too.
You are probably having a flare, and we all know how miserable those are, but is it possible to start pestering Dr. Fowler's staff (very nicely)? I think you could get in a lot earlier, especially if you have an appointment and Dr. Fowler sees the state you are in.
Take care of yourself and try to get some rest. If all else fails, you might want to seek some formal pain management assistance, because it can make the waiting more bearable. There is no honor or dignity in this kind of suffering, it just plain hurts!!
Posted by Janet (Janet), 24 October 2002
Rhea: There's not much I can say that hasn't already been said. Just wanted to let you know you're in my prayers. Hope this flare-up quiets down soon. (I think the changing weather must make things worse. My knees are killing me today, even the "good" one!)
Posted by Helena (Helena), 24 October 2002
I can't believe you have to wait another year to get a scope ! Jee, how lucky are we over here, on some days you even don't have to make an appt to see the OS, when you need a scope you have it done in the next 3 weeks or so. Boy am I lucky I am not in the US/Ca for that matter, although USA OS'es probably know more about the latest techniques (I have a good OS b/c he goes to the US regulary to knee conferences etc.). Anyway, I hope you will see the light at the end of the tunnel sooner than expected. As for the rest, I do agree you can't stay in bed waiting for your scope. Do quad exercices, and do something about that health care system! It sucks!
(((((Hugs))))) to you Rhea and everyone who is down at the moment. Seems a lot of us are going through a difficult time now.
Posted by Helen (Helen), 24 October 2002
Im sorry things are so bad just now. Hang in there, you have to feel better soon. I agree with all the advice above. You really need some concrete support now, in terms of pain management and being bumped up the waiting list if at all possible. You are way too young to be bedridden cos of your knee!
Virtual hugs Rhea
Posted by rhea (rhea), 24 October 2002
You guys are all so wonderful. Im still feeling terrible, but I can't tell you how nice it was to log in here and read all of your beautiful messages. Thanks for cheering this old bodied' gal up. You people mean so much to me. I don't know how I could get through this without you all. Thank you.
I am still doing horridly. Mom got me into the car last night for a quick spin. First time I was out of the house in 5 days. Mr. lefty is no better. I am not up to going to PT, but am doing the excersises I can tolerate (leg lifts ankle pumps, and stretches) to keep up my muscle tone. Its missery, but what can one do? My mother phoned the clinic yesterday and they said they were sorry, but there are 500 people ahead of me on the cancellation list, and the people who are going in for surgery now have been waiting over a year. If this continues on for much longer Im going to get her or maybe my GP to tell them its an emergency. Maybe I'll be in there quicker. I see the rheumy Nov. 6th and I am hoping hoping hoping that once my RA is taken care of, maybe I can battle the whole knee thing better. The rheumy I see is (I think) at the arthritic and *sports medicine* campus of this hospital. Maybe the rheumy could get me in to someone fast? Who knows...its hard to say.
I've got to go lye down again. I just wanted to say thank you everyone so much. Your support helps me "keep on truckin".
Thanks again. I hope everyone is doing better soon!
ps, My OS first wants to do the scope to confirm exactly what my problem is, although they suspect maltracking. If its something that can be fixed with the scope he will fix it, but if I do need the TTT he'd schdule that surgery later.
Posted by Linds (Linds), 24 October 2002
everyone is right that you definately need to keep that leg strength up, what about those 300 leg raises that Fowler wanted you to do each day! I know it's tough, but you are tough too, and if you get some strength back, your knees might feel a little better...Maybe.
The whole waiting list thing sucks, but it's life...I mean for all those other people they could be in just as much pain as you. You could try the it's an emergency thing..but if it's not life threatening, it isn't an emergency. Unfortunately with our health care system...waiting periods exist.
I hope that you are feeling better soon Rhea, I totally know where you are coming from, I am gimping around, going to be spending tommorow lieing low. Tkae care and talk to you soon Girl
Hugs and Healing
PS I think you need to get some pain management going, it's the only thing that is going to get you through this next yera
Posted by rhea (rhea), 27 October 2002
Well Im in my 8th day of this wonderful knee agony. The RA in my shoulders, elbows, wrists, and fingers is crying out for attention because of the brief crutch usage each day. And now my right knee is starting to follow the left. Not nearly as bad, but its wanting to follow. I've decided that after I get my RA under control (rheumy Nov. 6th) I'm going to go to our local pain clinic and see what can be done for the knees. These T2s are about as good for pain as smarties. All I can say is thank goodness for my ice machine. My mom has become an ice machine filler upper pro. I've emailed all of my teachers about my situation so maybe I won't fall behind to much. I don't know how much work I'll be able to do. Its hard to do much other than lay in bed crocheting to pass the time hoping tomorow will be better.
Hmmm maybe tomorow will be better.
Hopefully we will all have better days soon.
(((hugs))) to everyone.
Posted by martiniswiller (martiniswiller), 27 October 2002
I am so sorry you are having such a tough time. I think we have all had those really bad patches when all you want to do is dig a big hole and curl up in it. Hang in there. This, too shall pass. I think you were given some great advice. Maybe you could have your GP or rheumy dr. help with managing your pain during this year, maybe some stronger medication for emergency days like now, or electrical stimulation, and even visualization techniques. I know there were days when only my ice would help and I had it on 24 hours a day. There are going to be uphill days and downhill days this year- here's hoping that the rest will be downhill.
Posted by Rich_NYC (Rich_NYC), 27 October 2002
Sorry to hear you are having such a bad time. Kind of trite but we all have bad patches Hang in there kid You have been a real role-model. I don't think I would handle your situation nearly as well as you have. Read a good book, eat some chocolate, spend some quality time with your birds (helps me) hang in there we are all puling for you
Posted by enuff81020 (enuff81020), 28 October 2002
I understand the conundrum you are in--as apparently does all of the others who have responded to you. I almost hit the floor last night when my knee buckled--I've been back on crutches for the past 5 weeks. Everytime I try to get off of them, that happens...I'd rather use them and not fall down or have the darn thing lock up and leave me stuck somewhere. I had to send my husband out for a new brace tonight as well--I've worn another one out. I've worn out two immobilizers, two sets of pads and ends to my crutches, an ortho boot, and two post-op shoes. Enough.
One thing that helps me is staying busy--and I'm really guilty of being an "over-achiever." Right now--today--this pain is escalating by leaps and bounds and my knees are in competition to see which one can hurt the most. My vicodin is not helping either, I was thinking that it was as effective as candy corn
However--I will go to work tomorrow and I will do some extra tutoring in my free time and i will stay late for a meeting and to do some paperwork. Why? Not because I feel up to it and not because I love doing some of that stuff--but because I seem to be able to get the pain to slide to the back of my mind when I am overwhelmed with too much to do. My most emotionally destructive times happen when I have the time to dwell on what i cannot do and how my life has changed for the worse.
I am not a Pollyanna--all of that visualization and positive self talk does not work for me and the sheer idea of it makes me mad. But, winning over this crap that is trying to render me useless gives me a sense of accomplishment. The down side is that I do cry and whine and sometimes overdo it, but one discovery I made this summer is that this is going to hurt no matter what I do, so I am going to do things. My mental state needs it.
If you have not been put on bedrest, I'd try putting in some activity that you enjoy. Being with others is even better than posting here--the venting you need to do here so you don't wear those understanding others out. Go to a movie or to the library or play cards or games with a friend...but don't get isolated. Please let me know if I'm off-base and you have been put to bed (I've been there too...) Maybe then, we'll have to take up a collection and a busload of us will have to come over to your house and cheer you up (or scare you up--tee hee.)
Think about it. Your emotions are important too--and I, for one, am tired of my knees being in charge of everything. I have some friends who know a lot about RA and can connect you up with them--email me if you'd like to contact them!
Bless you--keep your chin up! Sylvia
Posted by rhea (rhea), 28 October 2002
Thanks Lesley, Rich, and Sylvia for the well wishes. My mom is worried that perhaps I have effused my left knee joint. It goes in cycles of being hot, red, and swollen. The pain gets a lot worse if I put it below waist level. Mom's hoping that when the rheumy hears that Im almost bedridden, on crutches, and missing school maybe she'll get me in to see one of the sport med surgeons at the campus and perhaps have a scope on Mr. Lefty to find out what is happening. Really, it feels like I have a nasty cactus behind that knee cap.
Lesley, after the rheumy appointment I do plan on getting into the pain clinic and seeing what can be done for pain management. Right now I am in a far from adequate pain controlled state. I don't know how I am going to manage the 3.5 hour drive to Toronto with this knee. Im considering taking a few gravol and try to be in a drugged out don't care state for the drive, but than I"ll be zonked for the rheumy appoint and not be able to ask my questions or anything.
Rich, the budgie is being very sweet about this whole ordeal. Every day she's preened my hair, made kissing noises at me, and is pulling some serious guard duty on my pillow. My poodle has been trying to make me feel better by sleeping right up on my stomach and giving little licks now and than. Thank god for my animals! Oh, and I've got the chocolate and book ideas working for me. Mmmm Mars bar Gotta love the Halloween season sales!
Sylvia, Im keeping my brain off the pain by watching t.v, reading, and crocheting "crutch pouches", this pouch that ties onto a crutch so a person can carry things. I have not seen anyone about this recent turn of events, so I have no medical opinion. Im waiting for Nov. 6th rheumy appt. Whether I stay home on the couch or not is not an option right now. Anything other than lying down with the knee up is intolerable. For the two weeks before this I did get myself out of the house to school 5/10 days, and than things got so bad I physically can't do it. I do make a point of getting my body out of the house every two days at least though. I get dressed (an agonizing process right now) and manage to get myself into the car where mom drives me around for an hour for an outing. Its terribly tiring, argeous, and very painful to do but I don't want to become too housebound. I talked to few friends on the phone too. I don't feel isolated or depressed, just a bit frusterated, and wondering how long its going to go on. Thanks for the offer of setting me up with some RA friends of yours. Perhaps once Im feeling a bit better I may take you up on that. I'll IM you when Im ready. Thanks for the offer!
Well you guys are great. Thanks for the nice compliments and encouraging words. "this too shall pass" I guess. I hope you guys are not hurting too badly, and Sylvia I hope your knee starts treating you better. Don't you hate being a "regular" at the ortho labs? After so many braces everyone there becomes your friend.
(((Hugs))) to my kneeguru family. Gosh, Im closer to this circle of kneebuddies than I am to my circle of friends at school LoL. Gotta love the internet
thanks again everyone
Posted by adis55 (adis55), 28 October 2002
Sp sorry to hear about your latest problems. I wish I could wave a magic wand to make it go away for you...
Wondering if you have seen this article,
Lets keep our fingers crossed. Keep up the quad sets or whatever exercise you can tolerate. And do keep up your spirits. Good luck to you
Updated Thu Apr 29 2010