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We have members who have had an allergic reactions to the tapes and adhesives used in surgery, with a similar response. Have you been tested for other allergies? Has a metal allergy been ruled out?
CRPS is a complex diagnosis, it can begin with a simple cut on your finger, toe etc, up to the worst injuries possible.
It is a reaction of your nervous system to injury.
The curable app might be a great resource for you, they have a free trial.
Click on the this hash tag and you will be taken to posts about #CRPS.
@DeannaTA .... you'll notice that Jo gave some information about how to treat a severe blistering like you had with your surgery 6 years ago. That information, while not something you need at this point, may be helpful for others who may have a similar situation.
As for dealing with your CRPS, Pumpkln's suggestions are right on target. If you haven't recruited a whole team of medical experts to help you deal with this condition, that would be a good step forward. As I mentioned, CRPS can be difficult to deal with. Many times there is a lot of trial and error to determine treatments that help and give you a more functioning limb.
We have had members who had this condition. In fact, we have made #CRPS one of our BoneSmart hashtags. So, you can search for posts dealing with it by searching for the hashtag or just by clicking on the link here in my post. When you click, it will bring up all the posts containing that hashtag.
I might suggest that you alter the title of your thread to reflect the CRPS rather than the rash that was years ago. Some of our members search the titles for topics they are interested in and you may get more responses this way. If you'd like to make that change, just post what you'd like the new title to be and one of the staff members will get it changed for you.
I know all this must be terribly frustrating for you. You are always welcome to post specific questions or concerns here. We'll try to get you as much information as we can to help. And, even if you just want to vent a bit, we're here to listen as well. You are part of the BoneSmart family now and we care about you.
You may want to put together a team of people to address your #CRPS, unfortunately it is not as simple as finding a pain clinic.
Find a counselors specializing in pain, you will probably have to call and ask about their advanced training in treating CRPS.
Find a PT who has taken classes about pain science from the International Spine and Pain Institute, ideally they should be certified. There is a directory of practitioners on their website.
Find a MD to help with medications and non invasive treatment.
They can as a team help you understand how your nervous system and brain work together, and how CRPS develops after injury/surgery.
You may want to take a look at the Curable app for chronic pain, they also address CRPS. You can also find them on the web at curable health.
Haven't been on the Forum since 2011 when I had a right TKR in the April of that year. I have had severe shooting and stabbing nerve pain in and around that knee ever since. Four years later I had a bad cut on my right ankle which just missed the tendons and which required 15 stitches. Nerve damage? Not sure.
Two and a half years ago I had a right THR followed by continuing numbness and nerve pain. Had a minimally invasive laminectomy last year after 57 years of back problems, followed three days later by a further spine surgery due to a hematoma that spread up and down 4 vertebrae from the surgery site. My quality of life has not been great. I go to a Pain Management Clinic at our local hospital. They now think I have CRPS (Chronic Regional Pain Syndrome).
My question is - has anybody had continuing nerve pain from their TKR's that has developed into this condition? If this is not the correct forum Josephine, please let me know.
Fudge! and again!
So glad you popped in for an update.
I certainly have thought of you and am glad you are still fighting the good fight...
I'm glad your surgeon was respectful and you felt like you were heard so you can see what options are available to you regarding the crps.
I'm sure you have sought out all you can on the subject but if you hit in this hashtag it brings you to some if our experiences with it on the forum. #crps
Has your OS considered meralgia parasthetica - a neurological condition that causes numbness, tingling and sometimes pain in the outer thigh. It's usually not serious. Meralgia paresthetica happens when a nerve, known as the lateral femoral cutaneous nerve, becomes compressed.
Still begs the question how it occurred during your other op?
As you say, maybe from laying on that side?
Hi folks, I am new to the forum living in the UK in Robin Hood county. I am a left leg below knee amputee of 50 years now and 10 weeks post op with TKR in my right and ONLY leg. I have had 3 surgeries on my left leg ending with my amputation and 6 surgeries on my right leg culminating in my knee being replaced.
My amputation was a result of being knocked off my motorcycle when I was 16 by a 30 ton lorry and as I recovered and got back to being "me" I thought if I have now got back to what I was before is it possible to reach even further? So I did all sorts of crazy stuff which made me become a risk taker and as a result I did not take much care of myself.
Unfortunately this lead to being run over at work by a 7 ton fork lift truck which resulted in 3 surgeries and being in a wheelchair for a year. Arthritis kicked in so the surgeon suggested cycling which was awesome till seven years later when I was knocked off my mountain bike and blew my PCL in my knee again and had 2 more surgeries.
I was in my late 30s then and was told I would be unemployable by my early 50s.
Err they where wrong lol.
I worked till 65 and had my knee eventually replaced last November at 66 years old
Life is now good again, I am reasonably pain free and have 130 degrees knee movement which is more than before my new knee
Hi @LBAK I also have #rheumatoidarthritis and have had two tkrs. I'm not on biologics but we've had other RAers on Bonesmart who were on them (but off them for the surgery like you) and they did well.
I took no longer than average to heal. But as you'll see as you explore the forum, tkr is very much an "individual sport"
I think paying attention to your nutrition is important. One thing I found interesting and helpful with my first knee was a visit by a home health nurse.( I think this wound up being mostly for my reassurance as this was my first ever surgery) She checked the incision (everything was fine) and gave me some handouts on wound healing nutrition. Not some crazy diet or special supplements but just stuff like making sure of getting foods with protein, iron, vitamin C and so on (and giving a nice list of which foods were high in what vitamin).
Your RA may kick up a bit being off the biologics--some do some don't--but it sounds like you are working with your rheumy on this.
Fatigue (we call it "energy drain") is real in tkr recovery for everyone and you may or may not notice more of that than others report. Many of us with RA are used to pacing ourselves, so "listening to the knee" in recovery won't be foreign to you.
Congrats and best wishes for your soon to be "upgraded" knee.
My OS has suggested that I may have Complex Regional Pain Syndrome. This is partly because I have had more pain than I should have at various stage in my recovery.
Of course I’ve had to research this myself! Here are a few websites that may be useful or of interest to others even if they don’t have this syndrome. I think it’s something that should have ‘raised awareness’ but please don’t let it worry you - it is quite rare.
Potential CRPS cure U.K.
American RSD hope
CRPS resources from CRPS UK
Sorry for the delay in responding. I've been so busy catching up on life, actually having a life, I've been remiss in responding to my e-mails, etc.
As for how I'm doing, honestly, it's as if I never actually had anything physically wrong with me. I've gradually returned to a "normal," active life with very little, if any limitations. My new hips have not limited me from doing anything that I've wished to do. In fact, over the past several days I've completed more chores (yard work, tree trimming, etc.) than I had ever previously performed in the past +/- 10-years.
It's been nothing short of amazing and I have God and the amazing, wonderful people on BoneSmart (like you) to thank for it. So, thank you again for all your concern, interest etc.. I can not accurately put into words how much it all has all meant to me throughout this entire process.
Unfortunately, I had to deliver my little sister to the hospital yesterday for her first (and very likely not her last) total knee replacement. According to our wonderful surgeon, the procedure went perfectly. However, unfortunately, she let one of the hospital physical therapists get her up and out of bed before she was really physically/emotionally ready for it and know she is seriously suffering the consequences. I spoke with her on the telephone a couple of times today and she's hysterical about the unbearable level of pain she's suffering through, merely because of some P/T's impatience/ignorance.
I can't tell you how mad it makes me that she allowed that to occur! She was doing just fine up to that point. She had slept through the night and had her pain/inflammation pretty much under control. Now, she's suffering more than anyone should ever need to due to an incompetent P/T, and her own inexperience.
As usual (lately), I'm short on time. But, I want to thank you again for all you've done for me and likely hundreds, if not thousands of others.
I'll try to update BoneSmart of my little sister's rehab progress, etc. as I gain more information.
Thank you all for your very helpful replies, I am telling everybody i know (well to people it might be relevant to) about this forum. Instead of me worrying and obsessing about a problem, i get loads of constructive advice and support. It also stops me constantly seeking answers from my husband when panic kicks in. So now, if i start worrying, the crafty man says 'go and ask your mates on the internet'.
My friend has recently had her knee done and suffers from anxiety worse than even me. We are a right pair, but what is so weird is that because she suffers so i am able to woman up and be calm and help her. I think that that is probably the heart of the matter and why this forum is so wonderful. If somebody has a problem one can be much more objective if not directly involved and see the big picture. Combine that with kind people wanting to help then what a combo!
I just had to get online and say how glad I am I found Bonesmart last month. It helped me make my list of questions to go over with the surgeon and his PA yesterday, while setting up my pre-op appointments and Joint Class before my Dec 18 RTKR ...and all of you helped me know EXACTLY what to ask!!!
The BEST thing I've learned is he believes like we do here----less "formal PT" is better, no one else should be pushing or cranking on the knee, ice and elevation are your 2 best friends, and ROM of 90 degrees is the only expectation for the 4 wk mark--though everyone is different. He even says if you're at 90 by week 4, he could care less if you even go to formal outpatient PT anymore. It's MY decision!!!! If NOT at 90, they'll play it by ear. They DO NOT want anyone forcing the knee to bend, and they think "working smarter/not harder" is better .
Keep in mind I LOVE exercise and want my bend back after my TKR in December ....but I was also worried I'd get one of those surgeons who scare you into an MUA at 3 months post-op, demand 120 degrees by week 4 or 6, and demand lots of outpatient PT to force the bend. The anxiety was killing me until I had the big visit yesterday. After my tortured experience back in 2015 (ACI cartilage repair), I knew I was going to self-advocate differently this time, with ME being in charge. However, now I know not to expect the battles and arguments, and I can actually relax a bit, knowing I get to work with a surgeon and staff that are supportive instead of intimidating.
I wouldn't have known how to prepare without you guys though. I can't thank you all enough.
Aww, thank you @Layla, that's so characteristically thoughtful of you, as you always are! I didn't even know it was my one month hipversary! (...It took righty a full month to calm herself down)
Not to worry, doing very well, but just landed in a tsunami of work activity that I knew was in the wings and had been secretly nervous I might not be up to doing so soon. Been going full speed for several days - day and night- and aside from some tenderness and AM stiffness, surprised at how relatively uneventful it has been, hip-wise, even after working all day with no cane. Lots of bedtime icing, but solid leaps of progress since even last week. I'd been concerned about having enough stamina reserves and how I'd hold up... and I'm so relieved to find those fears were mostly unwarranted. it's going very well! I think, in all my zeal for caution, I'd somewhat underestimated just how much healing had actually taken place. Body can surprise us sometimes when it's time to meet a head on challenge. I can't say I visited the ODIC lobby either, because, so far ...no war wounds to report! It is so freeing to rediscover the first signs of mobility again after being out of commission for so long.... like your grocery store moment, @Layla! It's an "Ahhh!!" thing.
Otherwise, I think @Bone-obo said it once, when he'd stopped posting for awhile, that he felt posting his day to day reports at that stage might just make for some pretty dull reading! Think I'm kind of there now as well - and I'm not sure anything I might contribute at this point could ultimately be of use or helpful ... kind of like that guest who stayed too long at the party, eating the last hors d'oeuvres. My avatar status now reads "graduate" - which sort of sums up how I feel. Without the cap and gown... Hey - Where's my BoneSmart diploma??
For the time being, I'll be wrapped up in work projects and back to the ever churning wheels. I will come check in when I can too. There's still a ways to go before I could be accused of walking purty or being fully recovered...but for now at least, I'm back on the road, chalking up some early mileage on the new titanium twins!
But I wanted to say, again, I'm so profoundly thankful to you @Layla & @Mojo333 and all the other mods and hippys here in BoneSmart world who so graciously helped and guided me through to healing the twin hips, through some breezy passages and some wicked rocky roads as well. Through the tears and fears, the bloomers and countdowns, the corkscrew and horse impressions, the Incredinle Hulk, and strategic pillow placements.
24/7 - I was never alone.
What a source of comfort, compassion and community this cyber recovery Inn has been for nearly 5 long months. We (me and the twins) couldn't have done it without all youz guyz.
THANK YOU SO MUCH!!
May you all turn fortuitous corners of healing just ahead!
First I would like to once again express how relieved and happy I am to have this site!! Everyone on here has been fantastic and I truly enjoy reading everyones experiences.
When I first found this site I was at my wits end....do more of this, do less of this, try this exercise, don't do this one....ugh and between all the conflicting information that seemed to get me nowhere and the lack of sleep and no improvement in my ROM I was one very unhappy person. Thank you to everyone who reached out and posted to let me know what I was feeling was normal (who knew you could feel depressed from a surgery??? well I know now and that helps a lot)
I have since been to see my OS....and was fearful he would recommend MUA like I had been hearing from everyone else.....BUT HE DIDN'T!!!!! And for that I was soooooo grateful and happy!!! He must've seen something in my face because he was so kind and caring and for that I can say that he is truly one of the best!!!
He looked me direct in the eyes and said I want you to stop, stop everything...you are doing too much and trying too hard and its not helping you. He told me to cancel all of my PT appts and to just do ONE exercise which he showed me and to do it four times a day for 10 minutes each time. He knew that I was pushing myself too much, putting myself through the painful pt sessions thinking it would help....He wants me to do the one simple exercise, rest, ice, elevate and be good to myself. I cannot express how relieved I was!!
And from reading all your comments which basically said the same has been extremely helpful!!! It takes a lot of the stress and worrying away. And to know that every one of you has been through the same process and it has worked for you just makes me very optimistic about the future. No more crying, being sad, worrying about flexion, am I doing enough....no more of any of that!!!
As it is now, no matter what my ROM is, I know that I have done the right thing. Before the surgery I could barely walk two block with out being in pain. I could barely go up and down stairs. And sleeping was also uncomfortable.
I already feel better walking, and I know in the future everything else will improve as well.....I must learn to have patience above all. So I may have a few bad days occasionally but my mindset now is to remain positive and to take all the information from your threads and the articles and to just know that I am not alone in this journey.
Thank you sooooo much for your kind words and support....I am eternally grateful !!!
An update: today is 6 months post-op. Surgery was April 17, and the last few weeks have been the best yet. I've had multiple days where I can go hours completely forgetting that I had surgery!
I am back to work full time, but still doing some work from home each day. This has been helpful when I get more tired/sore, and can go home and work from my couch/laptop for a few hours. I think I am more productive with multiple rest breaks, as well.
I am still dealing with some muscle soreness in my thigh and glutes, but I think that will continue to improve as I'm able to exercise more. I am doing a bit of physical therapy, since I started seeing a PT for some neck issues I've been having, and he's been very accommodating of my hip while giving me exercises for my neck.
I have to say thank you again for this forum. Without finding it, I'm not sure how I would have felt--the posters here really helped me feel that I am not some weird, abnormal person or that my surgery "failed." I am very hopeful that I'll be back to yoga and some cross-country skiing by the new year.
@Txmomgmom3 I'll be thinking of you on Thursday and looking for you on the other side. I couldn't start using the Scar Shield for around a month due to the steri-strips taking their time falling off and my OS asking me to wait to use the product until they all fell off, but I think it does work. Last time I had a red raised scar with some keloids that never went away, but were cleaned up and/or removed in another surgery. This time my scar is smooth and pink. I'm hoping it fades to a thin white line as time goes on. The Scar Shield bottle lasts a long time-I suggest you keep using it after the 4 week trial until it's gone. Good luck on Thursday!
I had bilateral knee replacements in August! I went back to work 3½ weeks after surgery!
I have a desk job, so, it was easy to get back. Soooo glad I went with Bilateral!
First week was a challenge, but, after that, I was feeling better and better! I credit a GREAT surgeon and reading recovery threads in BoneSmart! Bonesmart allowed me to get ready before and after surgery!
Celle and susieshoes - as always thanks for your wise words - I am much comforted
Not sure whether my son would welcome being called sweet (even though he can be)
More news: my surgeons pa phoned and asked if I could go and see him this afternoon. We have just arrived back. He found no infection, thank goodness, but said I had something called Complex Regional Pain Syndrome and has prescribed Gabapentin. I’m seeing him again in 2 weeks. So we’ll see what happens.
I had a very unstable knee too before the surgery--I think due to a meniscus tear. I was so impressed on day 1 out of the surgery with how stable the new knee was.
Your #rheumatoidarthritis could be a factor in your recovery, but it is a long recovery for everyone.
I felt like my recovery with knee #2 wasn't so much shorter as a bit easier than my first knee, which had more issues, though both were damaged from the RA.
Hi everyone, I just talked to Line and Jamie from BoneSmart and was encouraged to post a thread about my story. I was diagnosed with Rheumatoid Arthritis and avascular necrosis at the age of 14 after having major flare ups at both the ages of two and twelve.
Despite the flare ups, I continued playing sports until around the time of being diagnosed the summer before my freshman year of high school. From the lack of blood flow due to the AVN, my hips deteriorated quickly so by my junior year of high school, my family and I decided that I could not continue on without getting some sort of new hips. That June, we met with my rheumatologist who ordered xrays that proved that I truly could not continue on with life without receiving a bilateral hip replacement. So that August, both of my hips were replaced.
That December, I headed to live in Brazil for a year where I was able to live the life I lost in high school. I also had the opportunity to visit Thailand, Argentina, Paraguay and Uruguay. I lived so many experiences in that year that would not have been possible if it weren't for the surgery. I'm now a college student working towards becoming a physical therapist so i can help patients the same way my physical therapists helped me.
I hope that this thread reaches many people out there who are younger and also are going through the process of receiving joint replacements. It's a daunting procedure but the life you will have after going through with it, will be filled with opportunity and gratitude like you've never had before!
I have a few YouTube videos that I created a few years ago, during the process of doctors appointments and pre and post op:
I wish everyone the best in all that's to come!