has anyone who was diagnoised quickly and started PT made the rsd vanish
 

i was diagnosed 4 weeks after symptoms (from the trauma of a bicycle accident) and will start PT next week. Anyone have this type of start?

What was the injury and your symptoms from the crash?
Head, shoulder, arms - upper body injury?
or lower body - knee, hip, ankle. etc

Just want to be sure in case of any possible other diagnoses, or has all other dx been ruled out already to your satisfaction?

Hi,
 

I spent almost 4 years in Physical Therapy. First for my back, then my Thoracic Outlet and Fibro and then my RSD.

I think what is most important is how much the Physical Therapist know about RSD.

My first two Physical Therapist diagnosed my TOS after they got me walking again from my back, then they helped do as much as they could for the TOS but I later needed surgery. I then went back into PT for my RSD and Fibro. I found a husband and wife team that was the best. They didn't make me lift weights or do any kind of exercise. They did massages, heat therapy, and stretched my fingers and hands gently. I credit them for helping to save my life along with my PCP. They got me as far as they could.

Make sure it's not hard core PT. I finally got to where I could walk and do exercises myself. I now do the treadmill and other exercises. I also take walks.

It wasn't an overnight thing but it sure was worth the time it took to get me better.

Good luck with the PT.

I do want to say too that I consider myself in remission.

Ada

a cut on leg near ankle and huge knot below the knee
all other (clot, fractures) ruled out w x-rays, ultrasound etc
have swelling in ankle and foot and to lesser degree around my knee
pain in left foot small toe, left side of foot and in the knee

Hi fewdalord,
I started physical therapy and massage therapy real soon after surgery, The surgery was removal of two tumors in breast area and lymph glands. Following day arm doubled in size-pain etc. Sent to Rehab Dr. sent to p.t. It was torture, but stayed with it. I paid for an hour of massage as felt that would move it along faster and am glad it did. Stayed with it over a year and had nearly full range of motion from frozen shoulder, shooting pains etc.All was good, had the massage just prior to going to p.t. Was good for several months maybe a year. We moved from Oregon to AZ. They told me before leaving it's possible for it to move to the other should. Thought that sounded strange. Then it did moveto other shoulder. Started therapy and massage again. Wasn't as long this time. Back to tennis, water siiing etc.While water skiing at least a year later felt pull in my hand, Swelling, pain, Dr. said Rheu. arthritis. Didn't sound right so went toOregon ortho hand doc. Correctly diagnosed me in 1 min. followed up by tests in hospital. Started therapy , tens unit, and came back to AZ and got neurologist, more tests, meds, ortho hand Dr for third opinion and back into therapy, massage. Only got partial use of hand. It's frozen like a claw. Was frozen like a straight board. moved to other hand, ten feet and legs. Went to another neuro , psychiatrist, pharmacologist 3 in 1 doc that is very very good. That's when I found out I really got the RSD after the breast surgery. But I know i was in remission two times after the pt and massage. About a year each. Have full body and still moving. I swimming. This good Dr. saved my feet, they were turning upward curl and he gave me exercises in our pool, needs to e 86 degrees, not a problem in Arizona. My toes now touch the ground, and I do dailey stretching, eat good, use natural foods and vitamins with anti-oxidants, Anything to keep moving and circulation going.I have been tapering off on some drugs, but still need some. To be calm is so important. I use happy music, my kitty, good humor, reading positive attitude, meditation, visualization of beaches etc. We used to travel a lot. It's a bad thing, but I'm grateful for my life, family and friends. It's an automic disorder, so have high blood pressure and low blood pressure. Passed out from low blood pressure one morning, nearly died. Was out over an hour and my husband was upstairs. Couldn't get up, so crawled on stomach to hit on the door. paramedics could find a pulse and really scared my husband, but I was alive and stayed in icu 4 days. A friend here has had that happen 4 times. my pressure was 60/40
The pt. is painful for frozen shoulder and probably for any rsd, like my frozen hand, but ssoooooooo important to get use of limb back. Not give up, but don't let them get too aggressive either. Have they had experience with RSD? Mine did. I was strapped down and took pain meds before therapy and our daughter drove me.
Read as much as you can, READ READ talk to others, support group in town helps a lot. Blocks help some and make others worse, we are all different. It was 4 years before I was diagnosed so didn't have blocks and don't I would. I am going to try HBOT when my Dr. gets his two new clinics finished. Circulation is a big problem for us and it promotes healing. A couple I know bought their own units for their home dives.
It took me a long time to mentally emotionally adjust to full body and the pain etc. The good Drs. helped me adjust my mind and have some good days and some down days. Miss the old days, but grateful for the present. It could be worse. So many in the world going through tough times. Hope things go well with your treatment and be sure and ask lots of questions. Everyone is different and responds differently. Take care, loretta

Be sure to ask your PT what they know about RSD/CRPS? Have they treated anyone with it and where was the RSD/CRPS? My PT told me that for treating RSD/CRPS it's not a no pain no gain attitude. When it starts to hurt you stop and the question needs to be asked can another approach be taken example fewer reps or different technique.

The condition is different for each one of us and the affectiveness of the treatment is different for all of us. We all have similar heart muscles. Therefore Western Medicine can treat heart conditions with some success. Every person's nervous system is different and Western Medicine has a lot to learn about the human nervous system. More money is spent on curing things that WM has a chance to make a difference in many many lives. There is no cure for RSD there are treatment that help manage the pain. When it is caught early, it sounds like your has been, it can be put into a stop or remission.
Be active in your care and don't be affraid to ask quetions and if something isn't working speak up and communicate with your doctor and PT.
I wish you the best of luck wit PT and manageing your pain.
Take care,
Sherrie

In whatever stage you are in, whatever your start is, PT alone won't help you. You need medical treatment along with it or it will do absolutely no good!

what medical treAtment in addition to PT?

Are you seeing a doctor right now? What kind? What treatment was prescribed for you next to the PT?

Medication? Nerve blocks? Infusions?

JUST PT Now
pain is only infrequent for now but taking cymbalta already for dp so maybe this tamps down any pain

Like I said in another thread. I would go see a pain specialist right away. Pain specialists are trained RSD doctors. They know the condition and they know how to treat it.

Best of luck.

I was injured at work on 3/24/07;WC would NOT allow treatment until 5/22/07. I worked that 2 months in extreme pain. I complained to the WC case manager, with no approval until lawyer was threatened to be brought in for action.
I believe that is why I have rsd/crps I..delay in treatment.
Hyper-state of sympathetic nervous system, in chronic pain, w/o relief for an extended period of time.

hugs,
Dew

The "usual" treatment for rsd are meds, blocks and pt. The blocks are the thing you should be getting asap. They are a mixture of anesthetics that numb the body part and it interrupts the pain cycle. I know a couple of people who went into remission by having blocks done very early. They are no guarantee but they're an essential treatment after diagnosis. Pain management doctors are the ones who give them and pm docs are also the ones who usually really know about rsd.

With rsd there are never any guarantees but as of this moment in time, the above are the only "treatments" they know to do. RSD is different for everyone because all of our bodies work differently. What works for meds with one may not help someone else and that goes for any treatments they try for rsd. The important thing is to be aggressive with treatment as soon as you're diagnosed before the pain cycle becomes permanent.

Hugs,

Karen

My PT has definately been the most important part of the medical team taking care of me - he sees me 2x a week and pretty much knows all of my medical history having to do with the RSD and is familiar with all of my symptoms. He has encouraged me to use my affected part (arm and shoulder) as much as possible. He also believes me when I say I am in pain, which is critical. I am using my arm more than I ever was before probably because I am not as scared to use it like I used to be.

You have to find the right PT. Many of them don't know anything about RSD, and many of them may want to you to push too hard. Also - don't let them use ice on you. As a matter of fact, if they suggest it, get the heck of out there because it's a sure sign they don't know enough about RSD.

In response to your question - no, I was not lucky enough that PT made my RSD vanish. If only it were that simple....

I think being diagnosed early can really make a difference. I, too was diagnosed early, and had a NUMBER of different treatments, including on-going PT, and pool therapy. It took awhile (probably about 18 months), of doing a lot of work treating this, but I consider myself in remission now. You may need other treatment, too, but PT will probably be an important part of it (be sure to find specialists in RSD).:hug:

Fewdalord

I can see that you have been posting a lot given your recent diagnosis so apologies if I have missed anything and its in another of your posts. I thought I'd give you a bit of a "round up" of my thought rather than reply all over the board.

I don't quite understand your trauma injuries - I don't know what you mean by a "knot" for instance. I assume that you will have 2 desired PT outcomes - rehabilitation from your trauma injuries themselves and also the "treatment" of your CRPS. Just be clear that the physio you see understands what both goals are, how you will get there and that the treatment path for one aspect is compatible with the other.

I am not sure what symptoms you have that have allowed such an early diagnosis - maybe it would be useful if you gave us more detail on that? Then people could make other suggestions of how some of their specific symptoms have been tackled. I'd expect that any traumatic injuries needing PT would produce the sort of symptoms yyou described even 3 weeks after the injury. If you were given a certain diagnosis of CRPS so rapidly but with what sound like relatively "mild" signs or symptoms then make sure that you question the diagnosis.

Please don't misunderstand, I am not suggesting for a second that you don't have CRPS but it is a diagnosis that can only be reached after all other possibilities have been ruled out and it can really mess up your insurance and so on if you have such a potentially chronic and devastating diagnosis so it needs to be right. I think its pretty early after an injury to get a definitive CRPS diagnosis without showing fairly extreme and unmistakable symptoms.

Please don't go into this thinking that early PT makes CRPS vanish for anyone - you will only be disappointed. Whilst trying to remain positive, you need to try and protect yourself from unrealistic expectations because when they are dashed, you will find it even harder to recover and bounce back.

Make sure that your PT is actually addressing your CRPS and your injury rehab. Even people who achieve what they might regard as remission, usually have a longish and painful slog to get to that point and for many they have to keep up PT exercises to remain well. Embarking on early PT may benefit you and may not. For some people, like me, no matter how hard they try with PT and no matter how early it starts, it simply doesn't help.

As someone else said, PT isn't the whole treatment package you'd expect with CRPS. It would be normal to start a "cocktail" of drugs that are appropriate to your pain levels and it would also be normal protocol to carry out early sympathetic blocks which are used as both a partial diagnostic tool and for some people they also have a therapeutic value by providing symptom relief. Again there is no guarantee that these will work and for some people they seem to make things worse. I think you said that you had started cymbalta but it would be normal to be taking have a basic pain drug like paracetamol or ibuprofen which works at a more simple level on pain and/or inflammation.

The pain and other symptoms can vary a great deal over time and day to day. Some people have severe pain from the start and for others it is milder at times or it may build up more gradually over time. There is no way to predict what will happen to you. The idea that CRPS follows "stages" is largely regarded as an outdated theory since so many people simply don't follow the suggested symptom pattern that the staging theory suggested. It is better to think more generally about the fact that the symptoms you have now may progress and change over time. I have very significant and rapid changes in my symptoms over the first 18 months but over the last 3, they have stabilised. Some of that may be drug related, some may be time and some may be pure coincidence - nobody will ever know.

Keep a pain and symptom diary - this allows you to keep an objective record of what is happening. It is critical for medical appointments. Trust me, looking back in a few months you won't remember how you felt now so it is super-important to keep a record.

I think someone else suggested it but the single most important thing you can do is educate yourself. Use the rsds.org site and start reading your way through all the articles and information. You need to be a well-informed patient and take responsibility for your treatment - most doctors have no idea about CRPS so you need to understand what it is all about, what treatment options you have and then push for what you want.

I hope that it goes well for you. At least for now things seem to be reasonably managable for you and I hope that you do improve rather than ending up with significant pain and disability like I and others here have.