[lindkaye]

Hey there; Sorry to vent, but knew some of you might know how I am feeling right now and guess I need your acknowledgement and advice.
Background: RSD in right knee after knee replacement 2 years ago. I have lost my flex and extension to the point I need a cane, cannot drive, work,go down stairs normally, etc. I had knee opened up last year and scar tissue taken out - doc said everything else looked good - had to be the RSD. Had 5 lumbar blocks that worked for only about 6 hours each. I have now also been diag with MS and AS (Anylosing Spondylitis). Yes, my body is at war against itself! The main problem right now is the last 4 months I have been falling down so much more. Neurologist took MRI - no new MS lesions so no meds for now - doesnt think its the MS making me fall. I also have a terrible pain in the back of my knee (RSD has always been on the front side of the knee). This pain is different than the RSD - its not the burning and I feel popping as if my muscles were sliding over something. I cannot move my leg when it happens as there is so much pain. I used to be able to go up the stairs, but not cannot stand the weight on this leg. Anyway - I am getting the merry go round of drs - each dr is stating I should see the "other" specialist. I have been waiting to see a new ortho rehab dr for couple of months and saw her today. She had my records and asked me what was my main complaint. So I told her. Her first response was "did I need my cymbalta for depression increased?" ARRGGH. I cannot explain how I felt. Almost started to cry but then did deep breathing -my new best friend! I kindly told her no, I didn't need more cymbalta ( I know it helps pain also) - just needed help in trying to figure out where this new pain was coming from and why the popping feeling and the falling down. She then went on to tell me it was probably the RSD. No physical exam at this point yet, just gave me the impression that since I have RSD, everything I feel must be it! Then she asked me what I wanted her to do..... A couple of things came to mind but had nothing to do with medicine - lol!! Has anyone experienced this? I know RSD can spread, etc., but this feels so much different and feels as if the ligaments or muscles are not right. I also explained about the falling down occurring so much more. She didn't even seem to want to discuss this. Just kept bringing up the RSD and how it makes my leg difficult (ya think?). Finally she did say it might be a cyst on the back of my leg. So I asked her if it was, what can I do and she stated nothing as if they drain it, it will come back. It would probably resolve on its own - if this is what it was. By this point I was so ready to leave. I waited for a long time for this appt for nothing. I don't know where to turn at this point as my Ortho Surgeon will not see me as he stated there is nothing more he can do because of the RSD. I have only been trying to do some PT at home as my husbands insurance will only cover $1,500.00 a year for any PT (which is about 5 visits per year) But if you are treated as inpatient PT - they will cover $25,000.00. !! Has anyone else been "labeled" with RSD as to drs don't want to explore any other options than your RSD that could be wrong with you? I know RSD is a very frustrating disease for both patient and dr but at this point tonite - guess I need more cymbalta ! Thanks again for listening.

[Dew58]

Hi there,

The cyst the doc may be referring to is called a Bakers cyst. I had one after my first right knee surgery, and when the second injury to the same right knee happened, and a second knee surgery was performed, it was discovered. Here is a site that may assist you:

http://www.mayoclinic.com/health/bakers-cyst/DS00448

Now, once dx with RSD, many doctors do not want to do further surgery because of the risk of doing more harm and causing the RSD to spread. There are precautions that can be taken to stave the spread of RSD off if surgery is required on an RSD patient.

Alas, that doesn't help you with your symptoms of recurrent, constant pain and swelling. Other than the MS, we do share similar complaints. However, my ordeal was that my doctors ignored my complaints of the burning pain, deep ache,continuous swelling, and lack of mobility. They did not want to tell me that it was RSD, until I ask the doc on my MMI visit(WC case), what did he mean that my pain receptors had changed? He seemed shocked that I ask him that question. I had to remind him that he had said that on my last two visits, and one of those visits a WC nurse was present in the room. That is when he begrudgingly wrote on my Maximum Medical Improvement release report form that I could have RSD/CRPS I or CRPS II,minor??? Anyway, I was referred to a pain management doctor to have further evaluation of RSD on my knee. It took 3 months to see that PM doc and he dx me with RSD. WC wanted a 2nd opinion of their PM doc eval, and sent me to another PM doc, 3 months later; the 2nd doc agreed with first doc. Mind you, WC had stopped my pain meds,physical therapy,I was terminated and lost my private ins., and I had to go to my own PCP for pain relief. By the time I got to the 2nd PM doc, and his RSD dx was made, I am told that too much time had elapsed for possible reversal of the RSD to occur;also, there was no cure, and any blocks, or SCS would do me no good. Meds are the answer to my RSD. I could go into remission, but highly unlikely. The delay was caused by WC neglect to get me to a pain management doc in a timely manner.

So, you see, your docs tell you it is all RSD, and my docs tried to tell me that it was in my head, anything but RSD, until I got to the Pain Management doctors.

That popping sound could be chondromalacia patella, tracking problem when cartilage has been shaved or/degenerated to the point that bone is rubbing on bone. I have that problem,too. It is very painful, and PT was suppose to build up the muscles to keep my knee on track. I did not have chondromalacia patella issues until after the first surgery. I went to a 2nd ortho to do the second surgery, and he told me by looking at the photos of first surgery, that 1st surgeon may have been too aggressive shaving the cartilage to repair medial meniscus tear. The second surgery was to repair a lateral meniscus tear, that tore across to the median meniscus(injury repair of 1st surgery).

This site may assist you:
http://www.patellamd.com/1.html

Before the injury, I was a very active woman, worked out 3 times per week, worked 50 plus hrs per week, and family and I would spend most of our free time in nature; hiking, camping, fishing,etc. My signature at the bottom of this post sums up the information, without this detail.The detail in this post answered your questions.

Ortho rehab doctor..you need a pain management doctor. The two ortho surgical/ rehab docs I had were worried I was going to sue them, as I got worse from their care, not better.

My name is Linda, my friends call me Dew..nice to meet you. I am sorry you are experiencing this painful neurological disorder. Please feel free to reach out to me anytime.

[AintSoBad]

LK,
You would have many more replies here, I'm sure.
But for DEW has summed it up so succinctly!

I hope you take her advice to heart, and use it.
She has meant nothing but well for all of us, for a long time.

I wish you well also!

Pete

[lindkaye]

Thank you Dew & Pete - I was just so frustrated the other nite after the appt - had my hopes up for help and feel let down again. I do have a Pain Management dr - for about 1-1/2 years and problem I have is that it is just pills he wants to issue (I do appreciate the pain medication!) and not help me in the rehab dept which I drastically need. I have had my knee reopened since the original knee replacement and RSD diagnosis. They did keep me in the hospital longer and gave me the precautions needed so the RSD did not spread or go into a flare thank goodness. I had no RSD problems from this surgery - but it did not go away either. Right now my main complaint is I do have RSD but the recent pain I am feeling is not RSD driven from what I feel. I really believe something else is wrong in the knee area - whether a cyst or whatever. Thank you Dew for the link to the cyst - it explained alot more than the dr did. As for the Pettella problem - I did have problems with this - but that is what brought on the total knee replacement so have all new hardware of a knee. With my knee giving out and me falling down so much and with this new type of pain, I'm not sure what to think and that was the reason I went to the new ortho. I realize many have problems getting the RSD diagnosed and go many years trying to do so. My problem is the physicians know I have RSD and are too quick I feel to state that everything is from the RSD instead of researching that it could be something else wrong also besides the RSD. We all have different stories about our RSD I guess - but we all have it change our lives drastically! Thanks again for listening.

[daniella]

Hi. I thought I wrote you a response but don't see it here. Anyhow I can really relate. I have been to so many doctors and specialties and often have came home crying from the mental side of this. I often feel unheard and brushed off. I try to just stay in the day and work on what I can do as the next step. I have other issues going on with my eyes and I was dx with PN in addition to RSD. I have been to every specialist practically and test in the book. Nothing more to test for. A few thoughts I have for you. Have you thought of going to a place like Mayo or Hopkins since you do have multiple conditions?My current pain doctor which was like my 5th says how often doctors when they don't know what is wrong will say it is rsd even if it is not. Now some conditions like my PN if we could of figured out the why behind it then treating that can really assist the condition. Does your pain doctor deal with rsd a lot? I guess in my eyes some of the meds/treatments are supposed to enable you to do PT. I have had bad experiences with PT so am trying to progress on my own but am not saying you should not do PT. Just my experience. If I were to do this again the PT I would make sure the person worked with RSD a lot. My fear even with that as I went to Clevelnad Clinic and many knew a lot about rsd but still were clueless. I have heard good things about the pool so that may be something to look in to. Do you think the new popping and falling coule be from the MS and the other condition? Do you think maybe another neuro opinion? Have you had an emg/nc? I am sorry so many ?'s and not much help. Just some thoughts and hang in there

[hope4thebest]

HI lindkaye
I'm sorry your having such a very rough time...

It is devastating when you wait so long for an appointment expecting some concrete answers and a specific plan of treatment..only to leave, still with so many unanswered questions...because often they have no answers.

The ortho who did my foot/surgery wrote me off with no further appts. after he dx me with RSD two months later than when I diagnosed myself..he simply said 'adios..'

Shortly after, I found a new foot doc who was willing to treat me with injections and monthly check-in appointments., etc. (all of this has been a W.C. battle) Althogh he's certain I have entrapped nerves, he won't consider surgery 'cause of the RSD.....so I still feel undiagnosed that there may be structual things going on...
My P.M. doc kept pushing me into a spinal cord stimulator (declined) and more meds. She really had no answers to my many questions. Finally, she said there is nothing more she can do for me..

I've been able to fight for an appt. with a chief neurologist at a university hospital at the end of Sept. I hope it's a positive experience.

Somewhere out there is a doctor who will really work for and with you, and will try to diagnose these new symtoms instead of packaging them into RSD.
Dew gave such detailed and knowlegeable information regarding knee issues...there are so many great people on this board...

Try and get into a warm therapy pool if you can.

Slow, deep breathing has become my friend, too!
Hope4thebest xoxoxoxo

[yiisd]

You are not alone. Every illness (condition) that I have, somehow the doctors connect to my RSD and dismiss as "RSD is very hard to manage". I have accepted that some day, I will have cancer throughout my entire body before it is diagnosed, simply because no physician wants to even entertain the idea that something else might be causing symptoms OTHER than RSD.

I have accepted that fact, but now I have a new problem. I have found a combination of medications that allow me to have a fairly decent quality of life. My problem is, because one of the medications is Morphine, I can not find a physician ( pain management specialty or otherwise ) that is willing to write for the morphine. It isn't that I take a large dosage, I prefer the extended release over the immediate release, but I am simply unable to find a physician willing to write for the Morphine. I've had numerous nerve blocks, I've tried many different medications - nothing works like the combination I have found. I draw the line at having a pump implanted to administer the medications and when the physicians find out I am not willing to undergo this surgery, they give me the 30 days notice and boot me out.

It is SO, SO frustrating --- as you well know.

Just know that you are not alone. I don't know what is wrong with physicians today -- especially those who choose to go into pain management. You would think that if there was a combination of Rx that worked for a patient, they would be happy to help their patient. NOT SO IT APPEARS! RSD is a terrible condition - one that I have had for 7 years and as of today, I have never found any physician that I felt was on top of this condition both in knowledge & compassion.

I feel sorry for you, but you are not alone.
Good Luck,

[wildberry2277]

What i am going to say here might be easier said then done... BUT u need to stand up for urself tell them that u are sick of the run around and u found what she said about ur cymbalta very rude... and that RSD is a major part of ur life but not everything revolves around it...even though it seems that way lol.. Alot of times doctors give us the run around and demanding them to listen and standing up for ur self is important i was having the same exact problem and then i just did it lol.. I got what i need and i felt very good...

Pain free days..

[DarlaDaniels]

I saw an old post from Aug. 2008 & am hoping you still check in. I recently moved to Wenatchee, WA from L.A. because my RSD has kept me from being able to work. Unfortunately I left great doctors & now have a horrid one with no real knowledge of RSD. He has agreed to write a referral to see a specialist in Seattle, but he knows of no one & I am having a very hard time tracking one down. I noticed in your old post that you had a good PM DR & am wondering if I can get their info or maybe info on a RSD specialist you may have or know of. Any help I can get from anyone with RSD would be appreciated.

[bbpoolgurl]

Just wanted to say, Dew, that I am glad there is someone else out there who knows what I am going through regarding WC- the injury I had on the job caused the RSD, and some of the doctors for the Independent Medical Exams I had for my former employer don't want to say I have RSD, even though other doctors (oh, about 7 or 8) say I have it! They say it's chronic pain, but no way could it be RSD. We are fighting them now for treatment, as they don't want to pay. It's a horrible, horrible experience that I would wish on no one. And it's terrible that the laws in this country don't work to help those injured. I hope you are having a pain-free day, and if you ever want to talk, I am here!