calling_all_angels
big-cheese
United StatesOhh, How I remember your last trip to see her!!!!
Jo it was quite the trip. LOL
Jo it was quite the trip. LOL
Fusion Long ride to a successful Fusion
- Thread starter wanttoride
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OP
OP
wanttoride
senior
Well...if you ever want to "cross the pond" and come to Maine, I'd be glad to put your mind at ease (as you all have done for me) in the dental chair!
I just got back from my "chariot ride" to the barn! There is nothing better for the mind and spirit than to be with my horse, "Drummer" and my new Shetland pony, "Gracie"! I sat on the 4-wheeler (mind you, it's about 17 degrees in Maine today...brrrrr) and had Gracie eating out of my hand in no time! She's only 18 months old and looks just like "Black Beauty". Drummer was just glad to see me and nestled his nose in my jacket! (yup...tissues, please!)
It's been nice not to have to worry about PT the past couple of days. I'm doing my flexion and extension exercises along with quad strengthening and squats, etc. I'm not overdoing it...just doing enough so that I know I've done something. I am thinking about walking on the treadmill tomorrow. Very slowly, obviously, but I think I can do it. I've got rails on the side, and my wonderful hubby will be right there with me.
Did I mention that my RSD/knee issues start acting up when the sun goes down? What's with that??? :pzld:
I just got back from my "chariot ride" to the barn! There is nothing better for the mind and spirit than to be with my horse, "Drummer" and my new Shetland pony, "Gracie"! I sat on the 4-wheeler (mind you, it's about 17 degrees in Maine today...brrrrr) and had Gracie eating out of my hand in no time! She's only 18 months old and looks just like "Black Beauty". Drummer was just glad to see me and nestled his nose in my jacket! (yup...tissues, please!)
It's been nice not to have to worry about PT the past couple of days. I'm doing my flexion and extension exercises along with quad strengthening and squats, etc. I'm not overdoing it...just doing enough so that I know I've done something. I am thinking about walking on the treadmill tomorrow. Very slowly, obviously, but I think I can do it. I've got rails on the side, and my wonderful hubby will be right there with me.
Did I mention that my RSD/knee issues start acting up when the sun goes down? What's with that??? :pzld:
It's pretty common even without RSD to have things worse at night than during the day. I'm not completely sure why that is...whether we are "quieter" and more aware of our bodies or if it's the result of the day's activity or just what. But you have lots of company there.
calling_all_angels
big-cheese
Want,
May I ask if you walk on the treadmill backwards?? My PT tld me to walk slowly backwards it helps build back the muscles.
May I ask if you walk on the treadmill backwards?? My PT tld me to walk slowly backwards it helps build back the muscles.
Josephine
NURSE DIRECTOR EMERITA
I think that wouldn't be a good idea with RSD, calling. Would put too much stress on the legs.
And yes, my sister says her condition is always much worse at night. Many times she has rung me around 2 or 3am in tears. Heartbreaking.
And yes, my sister says her condition is always much worse at night. Many times she has rung me around 2 or 3am in tears. Heartbreaking.
OP
OP
wanttoride
senior
Jo...what wouldn't you do.....walk on the treadmill? Not even a slow walk? I was thinking it would be like walking with crutches, but holding onto the side rails. No???
How old is your sister? How long has she been suffering? I'm really leaning on you now that you are my "crutch" for RSD issues. I hope that in future posts, I can be of help as I get more information from my pain specialist, PCP and OS in how to deal with this thing they call RSD.
I think I'm very lucky that Lyrica is working to help "shut out" and/or lessen the symptoms of RSD. I read in many posts that people tried Lyrica, but didn't like the effects. I, too, had those same effects, but I knew it was going to take time to get the Lyrica into my system. I felt like a zombie for 3 days, just taking 1 75mg tablet. I made sure I took the pill(s) at 6pm and no later. They make you sleepy. Gradually, I added another 75mg tablet, and stayed on just the 2 tabs for about 2 weeks. I felt like "cotton head" for 3 days after starting 2. I knew I HAD to see if the Lyrica was going to work. I took 3 75mg tablets on week 3 and just couldn't tolerate it. I kept on taking the 2, and then tried the 3 a week later. I had to be, and still do, need to be VERY careful what other meds I take with it.
I've found that if I take ANYTHING else at the same time that I take the Lyrica, I'm in for major "cotton head" and feeling too sleepy. So....I take my Lyrica at 5:00pm now, and then I take my pain meds about 1.5 hours after that. AND...I ALWAYS take the Lyrica with crackers, a muffin, or any type of bread. I got this advice from my pharmacist, and I'm very grateful to him for telling me to "give it time" and not to mix any other meds with them when taking.
When I wake up...about 7am....I may feel a bit "foggy", but a cup of coffee cures that quickly!
My pain specialist wants me to be on (4) 75mg tablets by the end of the month. That will give my body 3 weeks to adjust to the 3 tablets. If I'm not able to tolerate 4, then he says 3 will give me relief. I hope this helps for anybody else that is on, or might have to be on, LYRICA. :thmb:
How old is your sister? How long has she been suffering? I'm really leaning on you now that you are my "crutch" for RSD issues. I hope that in future posts, I can be of help as I get more information from my pain specialist, PCP and OS in how to deal with this thing they call RSD.
I think I'm very lucky that Lyrica is working to help "shut out" and/or lessen the symptoms of RSD. I read in many posts that people tried Lyrica, but didn't like the effects. I, too, had those same effects, but I knew it was going to take time to get the Lyrica into my system. I felt like a zombie for 3 days, just taking 1 75mg tablet. I made sure I took the pill(s) at 6pm and no later. They make you sleepy. Gradually, I added another 75mg tablet, and stayed on just the 2 tabs for about 2 weeks. I felt like "cotton head" for 3 days after starting 2. I knew I HAD to see if the Lyrica was going to work. I took 3 75mg tablets on week 3 and just couldn't tolerate it. I kept on taking the 2, and then tried the 3 a week later. I had to be, and still do, need to be VERY careful what other meds I take with it.
I've found that if I take ANYTHING else at the same time that I take the Lyrica, I'm in for major "cotton head" and feeling too sleepy. So....I take my Lyrica at 5:00pm now, and then I take my pain meds about 1.5 hours after that. AND...I ALWAYS take the Lyrica with crackers, a muffin, or any type of bread. I got this advice from my pharmacist, and I'm very grateful to him for telling me to "give it time" and not to mix any other meds with them when taking.
When I wake up...about 7am....I may feel a bit "foggy", but a cup of coffee cures that quickly!
My pain specialist wants me to be on (4) 75mg tablets by the end of the month. That will give my body 3 weeks to adjust to the 3 tablets. If I'm not able to tolerate 4, then he says 3 will give me relief. I hope this helps for anybody else that is on, or might have to be on, LYRICA. :thmb:
Josephine
NURSE DIRECTOR EMERITA
What calling said - walk backwards on the treadmill!
My sister is 77 and, we have deduced, has been suffering from this for over 40 years!
As for meds, we'll see what this Professor in Newcastle has to say. We live in hopes!
OP
OP
wanttoride
senior
WOW!!! Over 40 years??? :shk: ...and only now have you thought of RSD as a possible problem? I truly believe things happen for reasons. I have never, ever been a part of a support group/forum before this.....It is my hope that we can all help each other...whatever that may be! :gphg:
I am with Jamie on the night thing during the day you are busy and distracted and at night you are not so you just noticed things more. I have the same problem.
Maybe try to find some activity that requires alot of attention like a jigsaw puzzle or a really good book.
Simon
Maybe try to find some activity that requires alot of attention like a jigsaw puzzle or a really good book.
Simon
Josephine
NURSE DIRECTOR EMERITA
Well, we (I) never heard of the condition before and not one doctor she's ever been to has suggested it (therefore one supposes (hopes) had never heard of it) either. Instead they all focussed on what they perceived to be a drug habit issue. I've said to her over and over, I don't understand why they keep haranguing her over her supposed 'addiction' to DF118 - the only drug that's ever helped her - and never questioned why she felt she needed it. Never mind she only ever took 1 or 2 tablets a day for years - they still labelled it as an addiction! A long time back a GP wrote that in red ink on her GP notes and not a single doctor has ever looked past it since. Wicked!
This is the full ironic tale - for several years she was being prescribed DF118 without any problems. Then our government issued an edict that doctors should only prescribe generic forms of any medications because the commercial versions were costing the NHS too much. Logical thought, you might say. So she discovered that her prescription was changed to di-hydrocodeine but she found them totally ineffective and told the GP so. Unwilling to go against NHS dictate, the GP argued that there was no difference. So I rang the firm, Duncan Flockhart and spoke with the senior pharmacist there. He confirmed that DF118 was more than just di-hydrocodeine but couldn't reveal the extra ingredients as they were a commercial secret. But he did provide us with a letter confirming this. My sister took it to the doctor who promptly threw it in the bin, saying it was rubbish. That was when she told my sister that her problem was she was 'addicted' to DF118 and that in future she could have 30 tablets a month but only on a private prescription. However, she added, if she would agree to have the generic form, she could have as much as she wanted because (get this) it was exactly the same as DF118 anyway! Can you see any logic in this! This was when she wrote the red ink comment on her notes which has followed Pat around ever since and been written into every referral letter to hospitals as well. Not one person anywhere, ever, has made reference to RSD which indicates they were either ignorant of the condition or being maliciously cruel. You choose!
But you can now see why your coming here has been such a blessing to her. I hope we can be of mutual benefit to one another.
This is the full ironic tale - for several years she was being prescribed DF118 without any problems. Then our government issued an edict that doctors should only prescribe generic forms of any medications because the commercial versions were costing the NHS too much. Logical thought, you might say. So she discovered that her prescription was changed to di-hydrocodeine but she found them totally ineffective and told the GP so. Unwilling to go against NHS dictate, the GP argued that there was no difference. So I rang the firm, Duncan Flockhart and spoke with the senior pharmacist there. He confirmed that DF118 was more than just di-hydrocodeine but couldn't reveal the extra ingredients as they were a commercial secret. But he did provide us with a letter confirming this. My sister took it to the doctor who promptly threw it in the bin, saying it was rubbish. That was when she told my sister that her problem was she was 'addicted' to DF118 and that in future she could have 30 tablets a month but only on a private prescription. However, she added, if she would agree to have the generic form, she could have as much as she wanted because (get this) it was exactly the same as DF118 anyway! Can you see any logic in this! This was when she wrote the red ink comment on her notes which has followed Pat around ever since and been written into every referral letter to hospitals as well. Not one person anywhere, ever, has made reference to RSD which indicates they were either ignorant of the condition or being maliciously cruel. You choose!
But you can now see why your coming here has been such a blessing to her. I hope we can be of mutual benefit to one another.
OP
OP
wanttoride
senior
Oh my gosh...my heart breaks for your sister. It's a wonder she's not a mental basket case. She is very, VERY lucky to have you for a sister and for an advocate! People come into each others lives for reasons...I'm a true believer in this! Sometimes, it takes a while to figure out why, and other times, its right in your face!
I went on a site today that gives some basic and statistical information on RSD, causes, treatments, etc. Basically, they want you to buy the book on RSD, but they give you exerpts from the book in adobe acrobat reader format. The site is:
broken link removed: https://www.rsd-guidebook.com/mda/index.php?gid=NR015&?a=a&assoc=Google&keyword=RSD I am going to order the book today.
I am looking forward to seeing my PCP on Tuesday, and my OS on Thursday. I've had some concerns the past couple of days.
I've been walking around the house more, and trying to use one crutch. I've also been doing more "up on the toes" and knee bends. I'm finding that my ankle is becoming very sore, as well as the top of my foot. I feel like my ankle is so weak that I'm leaning on the outside part of my foot. My ankle wasn't like this until a few days ago. When I get up in the morning, I can't even bear weight on the leg/foot/ankle. I'm really trying to walk correctly (as best I can with my knee bent at 17 degrees). I was thinking that maybe this was due to walking and standing more on that leg, but now I'm worried that possibly the RSD is spreading into my ankle and foot. The last 3 toes on that foot are still a bit "numb" from the RSD. If I were not on the Lyrica, I shiver to think at what level of pain and symptms I would be at!
I'm going to take it easy today, and do my quad exercises by tightening up the muscle while I'm reclined. I can do this all day! Jo...I keep forgetting to tell you that I have to pick up my foot with my hand in order to get it off the floor, up onto the bed, or into a car. I don't have the strength to lift it. When I try, I get sharp pain in my knee. I also can't do the exercises when you sit in a chair and try to raise your foot while bending your knee. OUCH! My lower leg and quad muscle just shiver and shiver, and when I think I'm able to get it off the floor.....wham! I get the sharp pain. I know my muscles are weak, but why the sharp, shooting pain? RSD???
I am really curious as to how many people are on this site that may be experiencing the RSD symptoms after their surgery, and don't have any idea that it might be RSD. How can we find out? There are sooo many Drs. out there that blow things off, or don't even know about RSD. It scares me to think that people may be out there with these symptoms and doing things that are going to make it worse. How can we find and help these people if they don't even know what RSD is?
I went on a site today that gives some basic and statistical information on RSD, causes, treatments, etc. Basically, they want you to buy the book on RSD, but they give you exerpts from the book in adobe acrobat reader format. The site is:
broken link removed: https://www.rsd-guidebook.com/mda/index.php?gid=NR015&?a=a&assoc=Google&keyword=RSD I am going to order the book today.
I am looking forward to seeing my PCP on Tuesday, and my OS on Thursday. I've had some concerns the past couple of days.
I've been walking around the house more, and trying to use one crutch. I've also been doing more "up on the toes" and knee bends. I'm finding that my ankle is becoming very sore, as well as the top of my foot. I feel like my ankle is so weak that I'm leaning on the outside part of my foot. My ankle wasn't like this until a few days ago. When I get up in the morning, I can't even bear weight on the leg/foot/ankle. I'm really trying to walk correctly (as best I can with my knee bent at 17 degrees). I was thinking that maybe this was due to walking and standing more on that leg, but now I'm worried that possibly the RSD is spreading into my ankle and foot. The last 3 toes on that foot are still a bit "numb" from the RSD. If I were not on the Lyrica, I shiver to think at what level of pain and symptms I would be at!
I'm going to take it easy today, and do my quad exercises by tightening up the muscle while I'm reclined. I can do this all day! Jo...I keep forgetting to tell you that I have to pick up my foot with my hand in order to get it off the floor, up onto the bed, or into a car. I don't have the strength to lift it. When I try, I get sharp pain in my knee. I also can't do the exercises when you sit in a chair and try to raise your foot while bending your knee. OUCH! My lower leg and quad muscle just shiver and shiver, and when I think I'm able to get it off the floor.....wham! I get the sharp pain. I know my muscles are weak, but why the sharp, shooting pain? RSD???
I am really curious as to how many people are on this site that may be experiencing the RSD symptoms after their surgery, and don't have any idea that it might be RSD. How can we find out? There are sooo many Drs. out there that blow things off, or don't even know about RSD. It scares me to think that people may be out there with these symptoms and doing things that are going to make it worse. How can we find and help these people if they don't even know what RSD is?
Josephine
NURSE DIRECTOR EMERITA
My thoughts exactly. And it's easy to start seeing everything as RSD but we must remember that - so far as is currently known - it's a pretty rare condition. I'm on a mission to find out more and tomorrow I shall be phoning the London Neurological Hospital to see if they know anything about it. I know we have a possible contact locally but doesn't hurt to have a few cards up one's sleeve!
Thanks for the link - I already bought a PDF copy and am reading it. I shall print one off for my sister. This has been quite a ride thus far! I can't thank you enough for enlightening me. I just hope that together we can make some impact somewhere. Even posting about it here brings it to the fore. And this forum has high ratings on search engines so it will show there as well.
Thanks for the link - I already bought a PDF copy and am reading it. I shall print one off for my sister. This has been quite a ride thus far! I can't thank you enough for enlightening me. I just hope that together we can make some impact somewhere. Even posting about it here brings it to the fore. And this forum has high ratings on search engines so it will show there as well.
OP
OP
wanttoride
senior
Good morning, all!
Jo....have a question for you before I see my PCP tomorrow.
My left foot turns outward. If 12:00 were straight, my toes point between 10 and 11:00....sometimes moreso on the 10:00 position. When I put my toes at 12:00, it feels very awkward and feels like my leg is contorted. It is very hard to walk with my toes pointing straight. Everybody notices that my foot points outward.
I asked my OS about this, and he says that this is normal, and when the tendons and ligamens and muscles get strong, that will help getting my foot to face forward. You can imagine how hard it is to walk with my knee bent at 17 degrees, and because it won't go straight, AND my foot turns outward, my ankle and instep is killing me yet again today.
Do you think what the OS is saying is true and will happen...in time? Here's the big question....IF the replacement was put on crooked on the tibia, would I have been able to get 130 degrees flexion under anesthesia????
This would be the main reason I would be seeking a second opinion for another OS. To see if the replacement isn't on the tibia correctly...because of my foot pointing outward. What are your thoughts? Do you think my current OS is correct in his thinking? Remember...he says the xrays look fine. ?????? :skp:
Looking forward to your thoughts, opinions, etc.
Jo....have a question for you before I see my PCP tomorrow.
My left foot turns outward. If 12:00 were straight, my toes point between 10 and 11:00....sometimes moreso on the 10:00 position. When I put my toes at 12:00, it feels very awkward and feels like my leg is contorted. It is very hard to walk with my toes pointing straight. Everybody notices that my foot points outward.
I asked my OS about this, and he says that this is normal, and when the tendons and ligamens and muscles get strong, that will help getting my foot to face forward. You can imagine how hard it is to walk with my knee bent at 17 degrees, and because it won't go straight, AND my foot turns outward, my ankle and instep is killing me yet again today.
Do you think what the OS is saying is true and will happen...in time? Here's the big question....IF the replacement was put on crooked on the tibia, would I have been able to get 130 degrees flexion under anesthesia????
This would be the main reason I would be seeking a second opinion for another OS. To see if the replacement isn't on the tibia correctly...because of my foot pointing outward. What are your thoughts? Do you think my current OS is correct in his thinking? Remember...he says the xrays look fine. ?????? :skp:
Looking forward to your thoughts, opinions, etc.
Josephine
NURSE DIRECTOR EMERITA
Well, it's not easy to be categoric when one hasn't seen your leg or the xrays but I would think such an excellent ROM would be unlikely with an out of alignment implant but nothing's impossible.
As for your foot, I really couldn't say about that. My feelings are that it could be weak ligaments, or 'memory' from pre-op disability, or a problem with the knee implants.
The 2nd opinion is definitely the way to go but still might not answer all your questions because you are looking for definitive answers and I doubt you're ever going to get more than just 'opinion'.
My thoughts overall are that you may never really find out until some time has elapsed. With the complication of the RSD, it's going to be really difficult for anyone to be categoric about anything without the passage of time to be able to say "well, this and this should be improved by now". Sadly, frustratingly, these things can often be a bit of a waiting game.
As for your foot, I really couldn't say about that. My feelings are that it could be weak ligaments, or 'memory' from pre-op disability, or a problem with the knee implants.
The 2nd opinion is definitely the way to go but still might not answer all your questions because you are looking for definitive answers and I doubt you're ever going to get more than just 'opinion'.
My thoughts overall are that you may never really find out until some time has elapsed. With the complication of the RSD, it's going to be really difficult for anyone to be categoric about anything without the passage of time to be able to say "well, this and this should be improved by now". Sadly, frustratingly, these things can often be a bit of a waiting game.
Josephine
NURSE DIRECTOR EMERITA
Well, it's not easy to be categoric when one hasn't seen your leg or the xrays but I would think such an excellent ROM would be unlikely with an out of alignment implant but nothing's impossible.
As for your foot, I really couldn't say about that. My feelings are that it could be weak ligaments, or 'memory' from pre-op disability, or a problem with the knee implants.
The 2nd opinion is definitely the way to go but still might not answer all your questions because you are looking for definitive answers and I doubt you're ever going to get more than just 'opinion'.
My thoughts overall are that you may never really find out until some time has elapsed. With the complication of the RSD, it's going to be really difficult for anyone to be categoric about anything without the passage of time to be able to say "well, this and this should be improved by now". Sadly, frustratingly, these things can often be a bit of a waiting game.
As for your foot, I really couldn't say about that. My feelings are that it could be weak ligaments, or 'memory' from pre-op disability, or a problem with the knee implants.
The 2nd opinion is definitely the way to go but still might not answer all your questions because you are looking for definitive answers and I doubt you're ever going to get more than just 'opinion'.
My thoughts overall are that you may never really find out until some time has elapsed. With the complication of the RSD, it's going to be really difficult for anyone to be categoric about anything without the passage of time to be able to say "well, this and this should be improved by now". Sadly, frustratingly, these things can often be a bit of a waiting game.
OP
OP
wanttoride
senior
Thanks! I'm off to see my PCP...appt. is at 10:30 in beautiful Bar Harbor, Maine! I'll let you know how the appt. goes and what her opinion is.
Yes....unfortunately I now agree, Jo. It's going to be a waiting game with lots of opinions. Something would have to "stick out" significantly for somebody to say that there is something definetely wrong with the implant, and....I don't think that is going to happen.
I can tell you this....since I've given my knee a break from all the aggressive PT, it hasn't bothered me as much...AND I've been able to do more strengthening exercises. I'm still not able to do much with straightening...it's VERY painful, and my knee turns nice colors of red and purple and then...I'm done for the day! So.....it looks like "slow and steady"is better than "go for it NOW".
I'll post as soon as I get back.....wish me luck, everyone!!! I'll be carrying all of you on my shoulders for support! :thmb:
Yes....unfortunately I now agree, Jo. It's going to be a waiting game with lots of opinions. Something would have to "stick out" significantly for somebody to say that there is something definetely wrong with the implant, and....I don't think that is going to happen.
I can tell you this....since I've given my knee a break from all the aggressive PT, it hasn't bothered me as much...AND I've been able to do more strengthening exercises. I'm still not able to do much with straightening...it's VERY painful, and my knee turns nice colors of red and purple and then...I'm done for the day! So.....it looks like "slow and steady"is better than "go for it NOW".
I'll post as soon as I get back.....wish me luck, everyone!!! I'll be carrying all of you on my shoulders for support! :thmb:
OP
OP
wanttoride
senior
Hi! I'm back from seeing my PCP. She spent a good hour with me! :cnsl:
Like I said before, she's been my PCP for about 20 years now. She's seen me through a breast tumor (non-cancerous, thank God!), and multiple surgeries on my right shoulder as well as my knee. Not once has she steered me wrong, and has been there through my divorce (was married before for 20 years), and all the ups and downs. I haven't always liked what she had to tell me, but as time went by, I never had a problem saying "ok....you were right"!
First, she said I had one of the BEST OS surgeons in the state. Not to say that he could have made a mistake, but whereas I was able to get 130 degrees of flexion during UAM, it is highly unlikely that there is a problem with the implant. She also looked at the xrays, and had an orthopedic surgeon in Bar Harbor look at them prior to my appt. today, and he could not see anything wrong with the placement either.
Second, she agreed with the diagnosis of "moderate RSD", but said that as a PCP, she could not diagnosis it. Only the OS and Pain Specialist have the authority to diagnose RSD, but she could agree, and does. My leg was reddish purple during the visit, and she noticed my toenails on my left foot were much longer than on the right. (I cut them the same length on Dec. 22nd - my last visit with my OS) She also noticed the stiffness and how the skin blanched around the knee and leg. (It took longer for the "blanch" to go away on the left, than on the right).
She honestly did not see any reason to seek a second opinion on the knee at this time. She feels that if I keep concentrating on a problem with the knee, that I won't concentrate on dealing with the RSD and keeping it under control. She said I looked tired (great...it took me a good half hour to put my make-up on). Can't fool her! She knows me too well. She also said that PT is treating me like a regular post-op knee replacement patient, which I'm not. She said I did a good thing in taking a break from PT for the past week and doing it on my own, at my own pace, and not rushing things. She did say that if I continued on the pace I was on, I would most probably have worse pain, and aggravate the RSD. Hhhhmm....this is what my OS also told me.....but I was a frantic, paranoid woman then.
She told me that I could look into these methods to help with the symptoms and manage the pain, as well as staying on the LYRICA, since it is working for me.
1. Look into acupuncture
2. See a chiropractor (luckily, I already have one that knows my history)
3. Look into massage therapy
4. See if I can get myself to a pool once or twice a week and work on water resistance to gain strength and help with ROM (this might be tough, as crutches on a slippery floor are pretty frightening, but I am going to call the local YWCA and see what they can do for me)
She also said that the pain meds I am on, although addicting, are at such a low level, that she isn't worried about me becoming an addict, and agrees with the OS. "Don't mess with the "recipe" if it's working....we'll revisit as time goes on". She agreed that I, and anyone else suffering with RSD, really needs to be on an anti-depressant, for obvious reasons. I'm on Lexapro, 30mg, and it's working for me with minimal side-effects.
I left the office feeling like a huge weight had been lifted off me. I still don't, and never will, like the diagnosis of RSD. However, now I have a path to take. This means calming down, and taking things slowly....very slowly. If I do, then there is a good chance that the RSD will not progress, and maybe....just maybe...may go into remission. Had this been 6 months ongoing, then probably the chances of this happening would be slim. Probably. One just can't say, as RSD isn't "cut and dry", or "black and white", as she says. She's right. I can only hope that I stopped the aggressive PT soon enough, and have calmed myself down. Stress and RSD are not friends! Oh...neither is cold. Cold is a BIG, BIG "no no".
I feel bad that I did not listen to my OS, and listened to my PT people more than him. He told me not to ice, and I fought it. It made no sense to me. He told me to be patient and take things slow. Again...I fought that. However, I was desperate to get my life back, and the only way I knew how to do that was to be aggressive.
That's who I am. I'm not a thinker...I'm a do-er. I put 100% into everything I do and I most definetely am not a "grey" person. It's either "black or white" or "one way or the other". Typical "Type A" personality. Detailed to a fault. That's me.....but that has to change. In order to re-gain my life to what is is NOW, I have to make some lifestyle changes:
1. Take life a little slower
2. Learn to relax
3. Realize that I can't do it all
4. Know that there are people that will help and understand (thanks, guys!)
5. Keep my weight down (easier on the knee)
6. Know that it's ok to have a "boo hoo" day!
and last, but not least....join a support group, for I am NOT alone!
Thanks EVERYBODY! (having a "boo-hoo" moment right now) I know I would not have found the strength without being a part of this forum! :thnk:
Like I said before, she's been my PCP for about 20 years now. She's seen me through a breast tumor (non-cancerous, thank God!), and multiple surgeries on my right shoulder as well as my knee. Not once has she steered me wrong, and has been there through my divorce (was married before for 20 years), and all the ups and downs. I haven't always liked what she had to tell me, but as time went by, I never had a problem saying "ok....you were right"!
First, she said I had one of the BEST OS surgeons in the state. Not to say that he could have made a mistake, but whereas I was able to get 130 degrees of flexion during UAM, it is highly unlikely that there is a problem with the implant. She also looked at the xrays, and had an orthopedic surgeon in Bar Harbor look at them prior to my appt. today, and he could not see anything wrong with the placement either.
Second, she agreed with the diagnosis of "moderate RSD", but said that as a PCP, she could not diagnosis it. Only the OS and Pain Specialist have the authority to diagnose RSD, but she could agree, and does. My leg was reddish purple during the visit, and she noticed my toenails on my left foot were much longer than on the right. (I cut them the same length on Dec. 22nd - my last visit with my OS) She also noticed the stiffness and how the skin blanched around the knee and leg. (It took longer for the "blanch" to go away on the left, than on the right).
She honestly did not see any reason to seek a second opinion on the knee at this time. She feels that if I keep concentrating on a problem with the knee, that I won't concentrate on dealing with the RSD and keeping it under control. She said I looked tired (great...it took me a good half hour to put my make-up on). Can't fool her! She knows me too well. She also said that PT is treating me like a regular post-op knee replacement patient, which I'm not. She said I did a good thing in taking a break from PT for the past week and doing it on my own, at my own pace, and not rushing things. She did say that if I continued on the pace I was on, I would most probably have worse pain, and aggravate the RSD. Hhhhmm....this is what my OS also told me.....but I was a frantic, paranoid woman then.
She told me that I could look into these methods to help with the symptoms and manage the pain, as well as staying on the LYRICA, since it is working for me.
1. Look into acupuncture
2. See a chiropractor (luckily, I already have one that knows my history)
3. Look into massage therapy
4. See if I can get myself to a pool once or twice a week and work on water resistance to gain strength and help with ROM (this might be tough, as crutches on a slippery floor are pretty frightening, but I am going to call the local YWCA and see what they can do for me)
She also said that the pain meds I am on, although addicting, are at such a low level, that she isn't worried about me becoming an addict, and agrees with the OS. "Don't mess with the "recipe" if it's working....we'll revisit as time goes on". She agreed that I, and anyone else suffering with RSD, really needs to be on an anti-depressant, for obvious reasons. I'm on Lexapro, 30mg, and it's working for me with minimal side-effects.
I left the office feeling like a huge weight had been lifted off me. I still don't, and never will, like the diagnosis of RSD. However, now I have a path to take. This means calming down, and taking things slowly....very slowly. If I do, then there is a good chance that the RSD will not progress, and maybe....just maybe...may go into remission. Had this been 6 months ongoing, then probably the chances of this happening would be slim. Probably. One just can't say, as RSD isn't "cut and dry", or "black and white", as she says. She's right. I can only hope that I stopped the aggressive PT soon enough, and have calmed myself down. Stress and RSD are not friends! Oh...neither is cold. Cold is a BIG, BIG "no no".
I feel bad that I did not listen to my OS, and listened to my PT people more than him. He told me not to ice, and I fought it. It made no sense to me. He told me to be patient and take things slow. Again...I fought that. However, I was desperate to get my life back, and the only way I knew how to do that was to be aggressive.
That's who I am. I'm not a thinker...I'm a do-er. I put 100% into everything I do and I most definetely am not a "grey" person. It's either "black or white" or "one way or the other". Typical "Type A" personality. Detailed to a fault. That's me.....but that has to change. In order to re-gain my life to what is is NOW, I have to make some lifestyle changes:
1. Take life a little slower
2. Learn to relax
3. Realize that I can't do it all
4. Know that there are people that will help and understand (thanks, guys!)
5. Keep my weight down (easier on the knee)
6. Know that it's ok to have a "boo hoo" day!
and last, but not least....join a support group, for I am NOT alone!
Thanks EVERYBODY! (having a "boo-hoo" moment right now) I know I would not have found the strength without being a part of this forum! :thnk:
Josephine
NURSE DIRECTOR EMERITA
Well, I'm so pleased she confirmed all I have been telling you! I've been chatting to people on the phone on and off all afternoon and found out that RSD appears to be an old term. It is currently known as "complex regional pain syndrome". There is a host of information on the net about it under this title.
OP
OP
wanttoride
senior
Yes...CRPS, also. That is what is written in my chart, like this: RSD/CRPS. I just have a hard time remembering 4 letters....3 is much easier to remember 
!
I think you are just like me....once you get ahold of something, you run with it! I told my PCP about you, Jo....and she said "there are angels among us"...you just don't know when they are going to appear, or in what form". Look at what we've started! I can only hope that there are others on here that can find these posts that may not realize about RSD/CRPS. :pray:
! I think you are just like me....once you get ahold of something, you run with it! I told my PCP about you, Jo....and she said "there are angels among us"...you just don't know when they are going to appear, or in what form". Look at what we've started! I can only hope that there are others on here that can find these posts that may not realize about RSD/CRPS. :pray:
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