My CRPS
 

Hi my name is Lauri. I found out I had CRPS after a 2nd TKR on my right knee and a long battle with infection. My pain had been getting much worse rather than better after weeks of "healing"... my surgeon immediatly recognized it as CRPS and sent me to PM who quickly confirmed it and sent me to intense PT 5x per week for a month... it was excruciating at best and in the end, I could not continue due to the intensity of the pain.

It has been 7 months now and the original pain in my knee has spread through out my entire right leg. I did have a series of injections in the sympathetic nerve. The first one one gave slight help for a couple of days so we decided to continue with the series of three...by the third injection I was frustrated but there was some relief. Now a month after that last injection I can say I got some relief but I can feel the pain building. I am still on quite a bit of PM med's just to get through the day. Otherwise I can't get out of bed, I walk w/cane and it's just plain miserable.

However, I choose to keep a positive outlook. I do not want this to consume me. Or my life and family's happiness. I suffer daily but I have a good support system that I am thankful for!

I don't know what the future holds. I don't know if this will continue to spread or not. I have to live one day at a time. Moment by moment sometimes.
I have to have my other knee replaced soon and I am very concerned about the possibility of spreading then... I don't know how this works but I am praying it doesn't happen in the other leg as well.

I am thankful for this site where I can read from others who understand what it like to truly suffer every day!

You are all a blessing! Keep strong!
Much love and friendship
Lauri

Hi Lauri, Welcome to NT, but so very sorry you have RSD. I am so happy you have a good family support system, that is a blessing. And your 'family' here will be too. There is tremendous knowledge and experience, as well as compassion and support. You have the added blessing of having a positive attitude and inner strength of fighting this.
15 years ago, I also had surgery and infection which instigated my RSD. but didn't get diagnosed for 4 years. Although was started on PT. I had frozen shoulder and took 100 pt to get full range back. Something that also ohelped me is- I had massage therapy prior to pt, which warmed the muscles up for further range. I also was given pain meds, prior to pt, which as with you, tortureous. I did get remission of over a year. The pt. told me not to be surprised if it went to the other shoulder and it did-out of the blue. More pt and massage and another remission. I personally believe the massage helped with getting desensitized and furthering the range of motion.
Lauri, from what I have learned, any form of surgery increases risk of spread of RSD. You might research, meds or anethestics that might lower the chances of that.
My third round of RSD was while water skiing, and feeling pull in hand.
That is when I was diagnosed and went to full body spread, and then internal spread. When in hand pt, I got about half of range of motion. Left hand is like a claw-delayed pt. wrong diagnosis, and I felt I had a wrong diagnosis, andwent to sports injury group a couple states away. LESSON; BE OUR OWN ADVOCATE
I'm so grateful to be mobile-what helped most with that was, is swimming in 86 degree water. Cold or Ice is not good for us. A good website is RSDSA-
the national organization- You can put in your zip code and find local support group. Also rsdrx.com puzzles list is a website in Florida. Dr. Hooshmand retired after 40 years of rsd practice, but the website is so informative. The puzzles are questions from patients and his answers.
Lauri, exercising and stretching to keep mobility is so important. Push yourself after taking your meds. Also desensitization- Take 5-6 plastic bowls and put cotton balls, fabric pieces, coffee grounds, beans, pop corn , sand, and run your hands and feet thru the bowls. This is important.
6 years ago, when I was diagnosed full body or generalized RSD, my neuro suggested seeing a psychiatrist to help me with mental adjustment to all the losses RSD brings in our life. I didn't like his two recommendations, so found one in yellow pages that is a wonderful source of comfort and education. He is a neuro, internist, psychiatrist, pharmacologist, and a couple more degrees. Board Certified. He oversees my pain management. I no longer have seizures after being on neurotin 3200 mg, gradually went off after 3 years or so. Besides vicodin, 4 per day- I'm on 2 high blood pressure meds, one anti-anxiety med-lorazepam 4x1mg Cymbalta 120 mg for depression, & sleeping agent, which also works on nerve pain as well. When Ambien quit working for sleep aid, he put me in his 200 person trial study for seroquel xr for fibromyalgia, which I also have. 300 mg.-started sleeping 10 hours a day.
Before that I was awake all night till 6 am. After the trial study, I didn't need 300 mg, and he cut it to 150 mg. and still sleep 10 hrs a day.
Epsom Salt Baths help relax in cool water and help to cool down. Also drinking COLD water.
When my toes started curling up off the floor, my Dr. had me swim every day while squeezing my toes-4 months later toes were touching the floor again. I am completely mobile except left hand like claw, but with therapy able to type with 10 fingers and am grateful to but my own food again, button buttons, and peel potatoes etc.
We live in Arizona, so hope to started walking dailey as soon as temp drops to 80's. We had 107 all of Sept. I exercise with 1# weights for an hour, and lower body 45 minutes. May get back to swimming this winter. We just moved out of our large home to smaller one on one level. I haven't been able to work, thus lost health insurance and income. Having a grateful attitude is so helpful.
We are 'here' for you and willing to help in any way we can. Please let us know how you are doing. I 'lurked' a while, but feel part of the 'family' now that I participate. It's also a wonderful feeling, if we can help in any way.
Take care, one of your new friends, loretta with soft hugs:grouphug:

Dear Lauri...
 

Hello friend...

So sorry RSD had brought your to us..We are family and we care, a bunch!! As you have met Loretta, she is such a dear..such a warm inspiration!! I too, had my RSD begining with my rt. knee following surgery, possibly before but not documentable.. now it has spread to my other leg, pelvis, left arm and jaw.. possibly my chest wall.. RSD is a beast.. I am 3 years out now and I can say..we have our days!! The pain is indescribable..I can say however, we manage after time to carry on our days with it..But it does seems to mold our lives into a different shape..There is a large adjustment period to this in accepting the new demension of our lives..allow your self time and try not to be too hard on your expectations of yourself..take it as it comes..and continue to read and try interventions.. medicine.. meditate..work closely with your pain management Dr... Good thing your Dr. did recongize it early as that is a positive for intervention to work..Just never give up... RSD will require strength and positivity..and when you have questions or feeling down..be sure talk to us!!

We care about you and will do anything we can to help you thru!!

Hugz, Kathy:grouphug:

Loretta & Kathy,
Thank you both for your love and comments. I appreciate you both so much. I need this site! I need the encouragement. I feel so alone. My husband is so good and understand however, he truly doesn't understand the depth of pain and struggle that I go through just to get up and get dressed everyday.
I am so happy to know that I have others that I can talk and relate to.
Please continue to write.
Hugs!
Lauri

Hi Lauri, It is difficult for others, even family that live with us to comprehend the depth of this disorder-the pain and discouragement it brings. My husband didn't have a clue for a long time what I was going thru, but now he does and that is a real blessing. It was hard on me, the time he didn't understand. But grateful now.
You'll find some friend will have some comprehension and others won't. I have a friend who's husband has bad RA, so she can relate.
I went thru over 2 years of grief therapy when my parents died -I was 25. and the loss was so difficult. I'm grateful for the therapy, as it helped me also with RSD. RSD comes with it-a lot of losses. sports, if we were active in that, Just normal things,like cooking, entertaining, cleaning our home, During flares, we are even homebound. Just grocery shopping is too much. So for me, when I went full body, going to a psychiatrist was a real blessing to me. I've been with him 6 years now and just now going from once a month to once every 2 months. He is my pain management doc.
You might share with your husband certain posts on neurotalk. or some information on different rsd websites. The one I like a lot is rsdrx.com And the puzzles list or the 150 questions and answers.
Thank you for your letter, your friend, loretta with soft hugs:grouphug:

Hmm...
 

Do you NEED to have the other knee replaced? Might spread, ya know?

"smoke 666"
Yes unfortunately I can barely walk due to the other knee - it is hard enough trying to walk with CRPS in one leg and with the other knee so bad
it is really getting bad... I am putting the surgery off as long as possible though.
Thank you for your reply!
Lauri

Thanks Loretta!
I did look at those other websites you mentioned and I have seen them before. I do like them a lot!
My husband is the best! I know he tries to understand however it's just something that if you haven't experienced personally, you truly cannot understand it's depth. I wouldn't wish this on anyone!
You are right, just doing simple things around the house, shopping, going to the mailbox... they are all difficult for me. I am making myself try and walk around the block everyday just to keep alive... my muscles are wasting away from inactivity and that just makes everything worse...
Wishing you the best!
Lauri

Hi. I am sorry for all you are going through and the future surgery. I would talk to your pain doctor about this before you have it. They may be able to suggest some treatment to help prevent it from spreading and to keep you more comfortable. I know even my non rsd areas are extra sensistive since dx. I think your outlook and being positive is so great. I feel in the long run it helps in recovery. I am also glad you have wonderful family support.

Thank you Daniella!