Even if the initial injury is treated and is now healed, that is no guarantee of successful treatment of RSD. I'm not trying to be downer...but I think in the majority of cases of RSD the original injury has already healed. That's one of the indications that it is RSD...that there is no longer an injury which should be causing this type of pain and the pain is way out of proportion with the original injury. Of course...there are two types of CRPS...type I and type II. Type II is the result of actual nerve damage and it is a little different than RSD in that sense. I have type I, and my RSD came from an injury where I sprained my ankle. The sprain healed...but the pain never went away and I was eventually diagnosed with RSD.

Whatever you decide...I really hope that things work out for the best.

The strange thing is that after my acl and medial cartilage surgery, I did have intense 'hot coin' feeling on the inside of my knee where I have 1 stitch and almost cried when they removed it with. All the other 13 around the knee where totally fine with only a little pinch.

However as time passed my operation healed fine and was back to full activity, running, bike, gym etc without any pain whatsoever until 20 months after the op. Wouldn't go skiing but you get the point. It did heal slightly tight but never bothered me to be honest.

The pain started 13 months ago after I over strained the knee and spent 2 months not letting it settle down by continuing normal daily activity however did not have constant pain, only pain from walking, fishing, driving too much or when keeping the leg straight too long. This was until a physio pulled my leg out several times which is what we believe caused my rsd as my pain then became constant and difficult to control but the funny thing was than when I kept it bent I had no pain at all. This is what mixes me up the most and still does! I was able to turn the pain on and off at the time and although the pain is way different now, the pain only allows for me to be seated with my thigh parallel to the floor and cant be in any other position or angle, otherwise I would get intenser pain.

I know crps is a monster but it would at least clear my mind to know what exactly was the initial cause of it and if it has to do with that spot from surgery and if so is it possible to fix or treat as opposed to the crps

Nigel - I understand the frustration of not knowing exactly WHAT caused the RSD. I had plantar fasciitis that seemed to get better but then took a major turn for the worse. (thinking back, I was doing stretches and one night I stretched tighter and felt a zing but thought nothing of it. I personally think this was the turning point...from then on things went south). Anywho, all of a sudden I could not stand to rest my feet on the bed or anything. It was sooo bad! The dr. did an MRI and decided to put me in a boot (still had slight tears). Initially, I felt a little better from the boot though I didn't rest it like I should (he never told me to be non-weight bearing! Having 6 kids, I am on my feet all.the.time.). My foot (right) got worse and worse, then started to burn, etc. You get the picture. I spent 11 weeks in the boot. Didn't help things.

My first PM offered me an RF (not pulsed). I decided against it. I might consider the PRF but really I would be unsure just like you.

good luck.
Janel

From what you posted here, my best guess (and of course I am not a doctor and have no specific knowledge of the details of your case) is that the CRPS resulted from the knee strain. I know that with the amount of pain that we suffer it feels like it should be more than that...that something bigger must be causing this pain...but it is usually not the case. The logical part of our brains says that with pain this severe there should be an injury or damage to match...but often there isn't. It's bad enough knowing that I got this from a sprained ankle...something many people get in their lives that usually heals up just fine...but then I think about the people who may have done something as small as slam their finger in a drawer, stubbed their toe, had blood drawn for a simple test and I think of how much worse they must feel about how this could happen. It makes me feel a little better if I think of it more as my sympathetic nervous system was damaged when I was hurt.

With all the normal test results, it is no wonder that many of us feel we are going completely insane because the pain is so severe and yet the doctors can find nothing wrong so we get bounced around until someone diagnoses RSD and then it's like this great sense of relief that we are not insane because the pain is real (which we already know but sometimes the doctors can make you question your sanity).

I also want to assure you that it is not uncommon for the pain of RSD to progress over time after the initial injury. I was able to walk on my ankle and even though there was pain, it wasn't completely debilitating at first. But instead of the pain getting better...it just kept getting worse and worse. Physical therapy didn't help, vicadin didn't help, tylenol didn't help...it just kept getting worse and the docs just kept ignoring my complaints of intense pain and even the fact that my leg was getting ICE cold. I was put in a boot to immobilize and initially it seemed like that helped...but then the pain got even worse than before. This is classic CRPS...if you don't use it, you lose it. You can get it back usually with extensive PT...but the longer you allow yourself to immobilize the limb the more pain you will be in and the more pain you are in the more you want to immobilize to avoid further pain. It is a vicious cycle and based on your inability to move your leg much I would say that you are pretty far into that cycle. You need to realize that even though your pain is EXTREMELY severe and you can't move you leg much...this COULD be just the CRPS and there could be no other underlying problem. Not saying this is the case...but you should be aware that it very likely could be and don't convince yourself that just because the pain is so bad that there has to be something else going on.

I don't want to discourage you from trying out a treatment that you feel is worth the risk to you...just trying to give you things to think about. I know when I am thinking about different treatment options my brain is running a mile a minute and sometimes it helps to just think things through out loud (or type them out here as the case may be). Sometimes I will even just grab a pen and paper and write down all my thoughts so that I can get them in some sense of order...even just making a list of the pros and cons can be helpful.

The above makes alot of sense and its a vicious circle. Have you both improved since? Yesterday when the pain travelled to the left knee in the exact same spot behind travelling down to the foot I said that there definitely cant be a nerve problem on my left! Although there are fewer symptoms and less pain on the left, its similar pain just not chronic in the left.

Would a sympathetic nerve block make more sense to do? Through the research, it seems as though its the first standard treatment to do. This cant aggravate the crps right? It can only block it if it works?

A sympathetic block is generally the first treatment they try. It certainly has much less risk of causing more problems than PRF...less than 1%. My last one caused mine to spread...but that is EXTREMELY rare (probably like 1% of the 1% that have complications will have this) and I think it is definitely much safer than many other treatments. Even in my case...it didn't make the pain in my ankle worse but the trauma from the needle caused it to spread to the site of the injection and then it spread from there. It is not an injection at the site of the CRPS, which is why is will not aggravate the pain in your CRPS limb.

Has my CRPS improved? Hard to say...but I CAN say that with physical therapy and proper treatment that I am a much better functioning person and I have a much better quality of life. With a routine and a bunch of things that I do to help to ease the pain, I am doing much better. The pain is still there...at its BEST it's at a 5 out of 10 and most of the time is a 7-8. But the movement and function of my CRPS areas is much much better. I have to make myself do things and I would say that my sense of "normal" is now adjusted to the higher pain levels. I have learned to cope with the pain better so that it is no longer the first thing I think about. It's there...but I use a lot of energy to distract myself as much as possible so that I am not dwelling on that constant pain. Instead, I've learned to recognize what triggers the pain and when it is starting to get worse and then I focus on the things I can do to ease the pain instead of the pain itself. Does that make sense? It's like I acknowledge the pain but I don't let it take control of me. I am not my pain. There are still bad days of course...but even on those where I have to take it easy because the pain is too much for normal activities I still focus on the things I CAN do vs the ones I can't do.

The key thing is to try to get your pain to a level where you can consistently do the physical therapy. If you do get a sympathetic block, you want to start doing the physical therapy as soon as possible while you have relief (assuming you do get relief from the block). You will probably have to start small with things as simple as trying to straighten your leg while sitting...or if you can't fully straighten the start with just going as far as you can and doing repetitions of 5-10 to start and increasing as you can. Obviously a physical therapist may be able to give you more specific things based on where your problem areas are.

If you cannot walk much then you have probably lost a lot of muscle (I know I did) so I had a lot of things to do for BOTH legs to get the strength back in both of them while also improving the function in my CRPS areas. My therapist told me to do activities with my hands that required fine motor skills and precision to get those back in shape (because I have CRPS in my hands too now). It hurts...but at least I can use my hands and I am very thankful for that. If I didn't make myself move them I think they would stiffen up and become useless. Use it or lose it...I just keep repeating that to myself when I am having a difficult time.

Just realise it is a long, slow process. Day to day I didn't see much progress but every week my physical therapist was impressed that I could either do something that I couldn't do the week before or that I was so much better at something I just tried for the first time the week before. These are the small wins you need to celebrate to keep yourself from getting frustrated. 6 months ago I couldn't stand or walk at all and now I can walk for several hours at a time with my walker...that's HUGE...but it didn't happen overnight. Even 2 months ago I could barely walk for 5 minutes in a row.

You just need to go at your own pace, but continue to push that enevelope a little farther...adding even just one repetition a day or a minute a week to your walking time or 10 seconds to your standing time at the counter. My physical therapist was excellent for helping me with this, pushing me just enough but not forcing me to do things that I couldn't handle. She came to my house at first twice a week and then once I was running out of visits we switched it to once every two weeks (which she only allowed me to do because I was clearly doing the work on my own in between visits based on my progress). Having someone who could come to the house was great because then every exercise I had was something I could do on my own, as opposed to an outpatient center where you may not have access to that equipment every day.

It has been such a mental boost for me too, finally heading in the right direction after months and months of continuing to get worse while I was shuffled from one doc to the next. It is much easier to make yourself do things when you can SEE the progress and you are getting BETTER instead of worse. Much easier to keep up that fighting spirit.

So...if I were you I would ask myself, "What do I need to do to improve my body's function?" Answer: physical therapy...geared towards specifically improving that function and set of from someone with CRPS. And what do you need to do to be able to DO that physical theray? Answer: get the pain to a manageable level. What steps you take to accomplish this is up to you and your doctor. Sympathetic blocks are a good place to start. Managing medications is also important. If the PRF is something you want to try, then that is up to you.

What I did when I decided to switch doctors when I realized the ones I was working with were not helping me is I wrote out a set of goals that I took in to the new doctor. Based on MY goals, we came up with a plan to address the problems. As we cross one thing off the list, we move on to the next or add a new one. This helps me to get my thoughts organized and focused, and it helps my doctor understand what my needs are. I didn't just want to live with things the way they were...I did not want to spend my life in a wheelchair overwhelmed by the pain. When I was working with a doctor with clear goals, that's when I started to get better. Maybe this would be a good idea of something you can do with your current doctor. This way you can see if PRF is really the right step to help you meet your goals or if there is something else that might be better to help you get there. Making it clear to the doctor what you want from your treatment can make it easier for them to assess if the risks of different treatments are in line with what you are expecting to get out of that treatment.

Sorry to go on and on...I just feel very passionately about all of these things. I realize that not everything that works for me will work for the next person...but if even one thing I can say helps even one person then it is worth it to say. Besides...typing is good exercise for my hands.

Just a thought Nigel,

You might benefit from a consultation with a new doctor. None of the long list of docs I have seen, even the ones who I would characterize as less informed, had this treatment on their list for CRPS.

The most important thing for me though was that within six weeks of my diagnosis I myself had the list of dangerous and risky procedures down pat and knew the ones to avoid.

From the kinds of questions you are asking I suggest two things. Spend more time doing your own independent research. If you are depending only on responses from folks here to guide you with you uncertainty with your physician it is time for a new doc.

One last piece of advice-making a decision to undergo a treatment that is highly controversial and can pack a punch in terms of risk may be a function of desperation. Magical thinking can get CRPS patients into very big trouble.

Hope better days are ahead for you!

[QUOTE=Jimking;838672]Nigel maybe you should attempt to find out who these people are and who your doctor said they cured and treated with this method and get their side of the story. I have a strong hunch their take would be mixed at best. My wife's doctor also stated 5 years ago she cured someone with RSD. I have my doubts. There is a member of this site that seems to have found a method to relieve her pain substantually. I'm watching this thread closely and trying to get my wife Suzy interested

Hi Nigal,

I don't mean to cut in but but would like to add my voice to using caution wiith any new procedure offered which has not been around a long time.
This doesn't mean if does not have merit, just that caution is needed. What
may be a new prodcedure and seems to have worked fo some so far needs
a follow up. By this I mean the prodcedure may have helped so short term
what is the consequences six months or a year from now. One menber mentioned he was following a member who was doing a new treatment as a
possible treatment for his wife.

I have hunch we are following the same posts since I have been researching
the same treatment for my daughter and this new treatment would appear to
have less potential for causing prollems and less invasive.

Hang in there, I believe there is a procedure for you but with anything extreme care should be used regarding something new. Judging frm
your posts you are researching and asking questions so you are not the
right track.

Joydee

Thanks for all your comments and advice. Catra, sounds your on the right track, keep it up!

Its not that I dont trust my doctor, quite the opposite in fact. She is the head of the pain department in Malta and deals with loads of patients with sever pain. She did not say she is going to cure me with this PRF, just that she aims to hopefully lessen my pain or even take it away for a few week or more so i can do my rehab and then redo it again if it helps. She said she will also do the sympathetic nerve block but she persistantly wants to do this for me first as she uses it often with good resuts.

It's good that you are working with a doctor that you trust...that is so important when you are dealing with something like this. You should feel comfortable asking all the questions that you need to so that you are more comfortable with any procedure or treatment plan. I hope that whatever treatment you go with has good results...I know that it's a hard decision because if you decided NOT to do it you will always wonder if it would have worked...but if you do it and it makes things worse you will always kick yourself for doing something out of desperation. It's not an easy decision to make...so I do NOT envy you your situation. It's very good that you are looking at it from all sides and weighing the pros and cons so that you are making an informed decision. In the end...it will be what it will be and then you just move forward. Even if worst case scenario happens and the CRPS gets worse and you don't get any relief from the PRF...there are still other options out there for you to try. You just need to decide if that is something you are comfortable with and have a plan in place IF it happens. Sometimes you have to risk the losing to chance the winning when your current situation is just not good enough. Please keep us posted on what you decide and how things go. I really do hope that you get some relief soon. Good luck.