[Truth Seeker]

I sometimes wonder where the people who write medical websites get their information from, because a lot of them are misleading and false.
Some websites actually state, that there is no proof that RSD spreads, such statements are absolutely unconscionable and untrue
Other websites say, that RSD is a chronic pain condition that is believed to be the result of dysfunction in the central nervous system "OR" peripheral nervous system, when in reality it can be both at the same time, hence effecting body as well as brain.
One website stated that RSD can be caused by medications, personally I give some credence to that, but what truly frustrates me is when I read about the stages of RSD
Most websites talk about three stages, more informed websites talk about four, but based upon my years of experiences with RSD, stages are irrelevant, what is relevant however, is the level of destruction, the deeper the level, the higher the pain and the greater the danger to our life.
Twisted limbs can become part of RSD, but it is tissue that is doing the twisting and once this starts, it will follow its path of cris crossing and continue to twist accordingly.
When tissue begins to twist, our bones will feel like the are being crushed, our organs will feel as if being strangled and you will know it and feel it when this happens
I truly wished, that patients would be listened to more often, rather than to take direction from doctors or researchers who cannot duplicate this, or who have never experienced this disease.

If stage 1 of RSD is suppose to last 1-3 month, stage 2, 3-6 month, than I would truly like to know what stage I have reached after more than thirteen years??!!
I consider the term "CHRONIC" a medical cope out.

[reruho]

I must agree with you on the concept of stages. I truly believe that stages are purelu historical and were a concept instituted by doctors to classify patients and for the benefit of the doctors. Stages would work if this disease followed a timeline or standard progression like many other diseases, which it does not. We know that all patients do not have all the same symptoms the same time, we know some patients may never suffer some symptoms and that we know patients may suffer from symptoms form more than two stages at one time. And we know that some patients may never progress past what is know as stage two, while others may progress at extremely rapid rates to the worst case. Perhaps it would be better to say these are some of the symptoms that may surface early in this diease and then list the others as symptoms that may develop as the disease progresses.

I was once told I did not have RSD because I did not have swelling, skin discoloration or muscle atrophy by physical therapist, even though 3 doctors had told me I did. This happened when I questioned his tratment plan for me. He had told me to stop all exercise and only do exercise during his PT sessions. We all know that you must continue to work those muscles on a daily basis or risk atrophy of the muscles.

I believe it is very important that we educate ourselves to protect our health. There are many uneducated/undereducated people involved in our healthcare. They advocate the standard treatments they were taught,which for many people are appropriate but are wrong for us. You must stand up and question any treatment that you think or know is contrary to what is appropriate for an RSD patient. I think it is appropriate to bring up new treatments for discussion with your doctor(s). It is imperative that we be involved as a member of your health care team in our care and treatment and not just as a patient.

Reta

[Truth Seeker]

Thank you for a well stated reply.
After I had been diagnosed with RSD, based upon a scan, I made some very foolish mistakes.
My RSD was spreading at such a speed, that I foolishly requested to see a neurologist, who told me, based upon I am not sure what, that I did not have RSD, but that I was overanxious as it related to my surgery recovery, no need to tell you what my thoughts were.
I made another request, to see a different neurologist, who stated that my case is difficult, but that his findings indicated that I do have RSD, again based upon I am not sure what.
The third neurologist could not understand why I had been diagnosed with RSD to begin with, yet his report and findings were pages long.
Number four put the icing on the cake, he told me that I needed a psychiatrist.
My physician told me that I was merely dealing with muscle spasms, just imagine that....
Here I was, literally fighting for my life and I had to put up with such medical "lemons."

I do not doubt that neurologists do understand the nervous systems, but only while the are functioning properly, but not when they have created a maze of destruction and I am convinced that they do not understand nerve tissue or any other layer of tissue at all.
I would love nothing more, but to challenge these people on their current knowledge, I can assure you that I would leave them speechless.

I find it truly ironic, that we can put a man on the moon, but we cannot figure out what causes diseases, but than again, there is no money or glory in saving innocent lives.

Had it not been for the mercy from our Creator, there is absolutely no way that I would be alive today, this I am 100% sure of.
If, you knew me in person or the person I used to be, than you would realise how unusual the above statement is coming from me.

I can assure you, that I will never again give as much as a "penny" for medical research.
Almost daily, we hear some politician talking about high medical expenses, which makes me nauseous, because if we had competent people in the medical field, than we as patients would not have to knock down doors to receive even basic care.
Medical care providers, which we as patients keep in business, should take a look at patients track records once in a while or even contact patients at random to make sure we receive the care we pay for.
Had someone looked at my track records of medical visits over a period of years, it would have been very obvious, that I do not cry wolf easily, granted, diseases do happen, but who caused the disease to begin with, doctors should not get paid generously to insult the intelligence of a patient, we have lived with our brain and body since the day we were born, who than better to know when something has gone horribly wrong.

[meglaser]

U are so correct! the longer we have this horid thing the worse it! Of course we need docs who understand it but here here - I've stopped reading the articles because they frustrate me but i guess i better get back to that.

Are u the individual that has info on rsd and the organs? My rsd has been attacking my stomache and only one place understands that which believe it or not is one hospital? If you are could you tell me which article and site it is on so i can show my docs

Thanks for any info if you have it!
Meg



.

[hipnochick]

I agree with you totally!
Can you elaborate on your "unusual statement," I am going through hell,as you did and yet you seem to have found some hope... Can you share? I am open-minded,, not judgemental and willing to learn from anyone!

hugs,
Ka;;y

[meglaser]

I am so glad you said something regarding the central nervious system and periphal nerves as I had it out with someone regarding this. I am just so tired of explaining this disease over and over again to people whom I have explained to already (I feel like all I do is complain and I will apologize to everyone whom reads this response!

MEG

[SALLIE]

How has your RSD changed over 17 years???

My husband has had it for 8 months and it seems to have settled to a manageable state with lots of medication. Maybe stage 2 but he still has alot of muscle loss and stiffness. The first 3 or 4 months were the worst because he could not walk or even stand very long. He ended up in the hospital for 5 days with a blood clot in his lung.

The ortho surgen seems to think it will go away over time but yours sure has not. His PM Dr.doesn't believe it will go away and will keep him on the meds or go for a stimulator if it gets worse.

I think the hardest thing is not knowing what will happen next, he still can not work as his job was very physical and he still can't walk very well. We put all of our future plans on hold until we know how he is feeling and just go day to day.

I do think his spread almost right away to his entire left leg and his right knee and foot. They tried a nerve block but it only helped for a day and the block itself was extremely painful.

Do some people really go into remission??? I understand the longer you have this the less chance it will go away but how long is to long.

[reruho]

Sallie,
His ortho is wrong. This is not like an infection that you can clear up with medication. This is a progressive syndrome. What may help your husband get to a good point of management was the early diagnosis and start of treatment. It sounds like he had a very serious injury complicated by the onset of RSD/CRPS.

Remision is a difficult topic. Young people and childen have the highest rates of remission and they believe it has something to do with growth hormone assisting in the body to repair it's self. I think most adults hope to get to a point of good pain control with physical therapy and medication.

I think the problem we have with this syndrome is the lack of good information from doctors. Talk to 12 doctors, you could come away with 12 different descriptions and would truly believe it was 12 different diseases. My first PM didn't like to talk much, (boy were we the wrong mix!!!!!). Once, when I asking question during an appointment told me I knew more about RSD than most doctors. Well, that didn't answer my question nor instill much faith in me of the medical field. It was in the early months of my diagnosis and I decided then and there I would have to continue to educate myself in order to find the answers and protect myself. My primary had told me to become an expert on any condition I had to protect myself, he said doctors can't know everything. I realized this was so true that day. I haven't had very many doctors give me much information or take the time to sit down and talk to me about this monster. My OT (occupationa therapist) saw the first signs and was putting notes like "RSD like symptoms" in her reports to my Ortho. After my diagnosis, she told me she did not like talking to patients about RSD because she didn't want them to lose hope. Did she forget the part of the Hippocratic oath that said, "do no harm?"

Dr Hooshmand's website (www.rsdrx.com) is the best website for information. He does more than talk, he explains why it is happening. He also will give you a good idea of the progression and what you can expect. At the bottom of the website he has a link to a series of puzzles, which is a series of questions he has answered.

I apologize if I am not too upbeat, normally I am. I have lived with this monster for 2 years and was able to get to a good point of pain control. I re-injuried myself this weekend moving some furniture around my house. I am hoping this is a minor setback.

[jenniegump]

hello,
my ortho surgeon and OT also were not jumping at the chance to explain this rsd thing to me either. in fact i was just diagnosed last week and when i was injured over 6 wks ago the doctor mentioned that i may have rsd but did not explain what it was other than he compared it to fibromyalgia. i asked if i should research rsd and he said no. my OT admitted that was so i would not get discouraged. don't you think though i would be smarter to learn about it? my doctor also admitted that the medical field is very puzzled about rsd and that is the reason for so many different names for it. he plainly stated the medical field is baffled by it (at least he was honest). he has been very clear with me that therapy is key to my recovery as well as pain management, but is there really such a thing as recovery with rsd? he said i was in the early stages of rsd but i don't even know what that means. i guess i need to do some more research. i do understand my medical team not wanting me to research this because they don't want me to get freaked out, but then how would i ever know what to expect?

[reruho]

Jennie,
I find it quite preplexing that they would mention this and then tell you not to research it. I would be very of this suspicious type of behaviour. I would have gone home immediately and researched the topic.

I had been in a car accident and injuried my wrist and heavily bruised my right breast. I went to a surgeon to talk to him about the breast injury. Afterwards, he and I was talking and I asked him about my wrist healing and this burning pain. He named the beast and told me to google RSD. Then he shared with me, that his son had RSD from sports injury. He told me to ask my ortho directly if this could be RSD at my appointment in 2 weeks.

My ortho said yes and I was sent to Pain Management. My symptoms started at the two week mark and I started asking questions. At the 4 weeks mark the cast came off and I complained of the symptoms but no one said anything. At every appointment I complained and they just nodded, noted it in their notes and never said anything. There was no reason I had to wait until the 16 week mark to be diagnosed. I do not know when I would have found an answer.

I remember reading the first website and crying because there was all my seemly unrelated symptoms. I was relieved to understand what was happening. I had started to doubt my sanity because none this had made sense and no one was answering my questions

I think it might be time for a new doctor. You need to find a doctor that has some experience with RSD and one that is honest with you. I want a doctor to tell me the truth and I could not stay with your doctor. If you live in a small town, you may have to stay with this doctor but I think you need to lay some new ground rules, like honesty about your condition.

I would recommend reading from the RSDhope.org, RSDfoundation.org, and RSDSA.org to start with. These sites will give you some good information and a good foundation to understanding your condition.

Education is the key to managing this disease. Continue to post and ask any question you have. Realize that depression is very common and it is the result of the RSD, RSD is not caused by depression. Come and vent if you need to, frustration is common with family, friends, doctors and life in general.

Reta