Miss V - QUESTIONS ABOUT PHYSICAL THERAPY - SPREADING - MORE
Friends;
Thought some of you might like to read this. It is something I wrote for the RSDHope teen corner. Miss V is a teen who has struggled with a very nasty case of RSD. Started out as a simple injury but progressed rather rapidly, due it seems to poor treatment choices on the part of some of her Drs who may not have been too well-informed about RSD. Vanessa was kind enough to share her experiences with the group, she is a brave young lady.
Vanessa's letter to Miss V:
Miss V;
Sorry it has taken me so long to get back to you. There have been so many people emailing, calling, and writing in the past few weeks. So many sad stories, so many people needing help. I don't know if more people are being diagnosed or more people are getting RSD/CRPS. I am hoping it is the former.
Anyway, thank you for answering my questions, I appreciate that. I asked them because I was trying to determine how your RSD traveled forward so quickly in so short a time. I had a feeling but wanted to make sure my guess was accurate. Seeing what you had written, especially what they did to you in physical therapy, it doesn't surprise me the course your RSD has taken. I think your case is very typical of patients who present with a simple case of RSD and then have it spiral out of control due to physicians and/or physical therapists who are not up to date on treating RSD or frankly, don't know how to treat it at all. The patients pay the price in the end.
Let me get to your responses and I will show you what I mean. Hopefully others can learn from what happened to you. I apologize for the length of this email but I wanted to address each of the questions as thoroughly as possible since there have been many others who have had similar issues.
(Miss V's responses are in italics)
Keith, I certainly don't mind answering the questions! It'll take me a while to get this typed up as my hands are unsteady, but I will answer them all... :)
1) The 13 months prior to diagnosis-- from October 2005- September of 2006 I had intermittent bouts of shooting pain up my arm, and I just ignored it (it wasn't that bad, and I didn't know what it was, but I knew it came from the thumb crushed in car door injury). In September I finally saw a chiropractor. Thinking that I had a pinched nerve, she (the chiropractor) gave me an adjustment and told me to come back twice a week for 6 weeks. That night, after the adjustment, the pain in my arm and right shoulder/ right side of my back as well as my neck was horrendous!
While there are some patients who say they are helped by chiropractors, it is usually because they work on the parts of the body that are not affected by the RSD. The manipulations can sometimes be helpful. But problems can occur when they try to manipulate those areas involving RSD, where the nerves are in a state of hyperactivity and/or disrepair. It is easy to further damage these nerves and/or the surrounding nerves by the use of physical manipulation. Even if you appear to feel better at that moment, the hours later, that night, or days later you can experience a "rebound" effect where your pain will spike. This can be permanent or temporary depending on the extent of the damage. This is also the same reason why intense physical therapy involving the RSD limb(s) can be detrimental. In addition, most RSD patients have extreme sensitivity to touch/vibration so this manipulation can be very painful in and of itself not only at the time but also can have a "rebound" effect later; meaning later that day or the next day your pain can be much worse.
HOW HAVE YOUR DOCTOR VISITS BEEN?
2) It was horrible, and I ended up seeing an ortho surgeon, who sent me for 3 weeks of PT. After a week the pain stopped, and then returned again. A visit later to the ortho surgeon and he just wanted to send me back to PT, telling me that I just needed to do PT and I'd get better. I was in tears. The pain was so bad I was crying and he was just offering me pain killers and basically kicking me out of his office, as if I was pretending I was in this pain
Boy, how often do we hear these things? "Take a pill, you'll feel better!", "You aren't really in pain, quit faking!". As if that is all we needed to do and/or hear! How many of you wish you could plug your Drs into your body for five minutes when you go to see them, so they can feel exactly what you feel? How likely would you be to come away with hearing 'You are exaggerating your pain"? Not very. More often than not they would unlug, look at you, then break down in tears and hold you out of compassion. Then compose themselves and say, "How can I help make you better?" Wouldn't that be a switch? How truthful would the words "The Doctor will see you now" become then?
3) I talked with my primary care doctor after this visit and when my hand started swelling/ turning purple/ cold. She told me what orthopedic doctor to go to, and so I went to get a second opinion This ortho (new one) told me I had RSD, and she started me on percocet and neurontin, as well as sending me to intense PT (which started out as 2 hours and toward the end of PT was 4 1/2 hours long!). I did desensitization, ROM exercises, stretching, strengthening and aerobic exercises.
So, you finally got diagnosed, but then she puts on what many would consider to be the wrong medications and the wrong physical therapy! Percocet is an acute pain medication. Acute pain and chronic pain are not the same thing, they cannot be treated with the same pain medications. Nor can patients with chronic pain conditions be treated with the same physical therapy programs be treated as those with acute pain, the goals are completely different so the therapy must be. (see below for more info), 4.5 hours of PT for an RSD patient is much too long, especially if it is the wrong kind of PT. Then you run into diminishing returns and the patient ends up worse than before. Is that what happened?
DID YOUR RSD SPREAD FROM ITS ORIGINAL LOCATION?
4) In the beginning of December the RSD moved to my left hand/ arm/ shoulder (mirror image spread). In the end of January the RSD spread to my feet/ legs, after running 1/2 mile the past day. Everyone tried to convince me that it was just muscle pain, and I had pain because I hadn't ran since August. I kept telling everyone that it was the RSD, and that I had the RSD pain and the symptoms as well (color/ temp change, sweating, swelling, muscle spasms/ twitching and started to get an ulcer). PT was started for my feet/ legs the next week.
Spread is a tricky thing. See more information on this below when we discuss "full body" or "systemic" RSD. It is quite possible yours did spread to your feet/legs. usually it is a more gradual thing, happening over the course of weeks or months, but with RSD there are no absolutes. In addition, as we note below, many patients, between 70-80% of patients, do have their RSD spread from its original site though. For some it is mirrored, as you mentioned; going from one foot to the other, or one hand to the other. Sometimes it spreads from the hand to the shoulder, known as "shoulder-hand syndrome". Sometimes one entire side can become corrupted.
WAS ICE USED DURING YOUR PHYSICAL THERAPY?
5) Yes, ice was used for 3 weeks. Then I read about ice/ RSD and stopped the use of all ice. After that I did contrast baths and heat only (used a fluido for desensitization, as well as texture rubs). Fluido for just arms? ( This produces a physical effect similar to the whirlpool, except it provides a dry heat environment using finely shredded corn husks warmed to a temp. of 102 to 122 degrees F. )
Ok folks, here is a HUGE part of the problem and probably where your RSD did another big turn. Your first may have taken place when you went to the chiropractor, next when you had that aggressive physical therapy, and now the use of ice and hot/cold contrast baths. You did great when you stopped the ice, some damage had already been done though. BUT, the hot/cold contrast baths continued the damage.
6) I did aquatic therapy for 3 weeks, after which my walking went so downhill that I cannot walk unassisted, and use a walker around my home, and a wheelchair to go places. The therapist there was so scared that something was going to happen to me because of the shakiness in my legs.
Three weeks is a start but it should have been months not weeks. It should be a minimum of 6 weeks before your first evaluation in any case. It isn't easy at first but it makes such a huge difference in the long run. A big part of the problem was probably all of the possible damage they did to you before you got into the water; the ice, the hot/cold contrast, the aggressive land therapy, etc. Your body has been so battered it doesn't know which way is up. We would recommend checking out the aqua therapy article we have on the website. It was written by an occupational therapist and is well written. (see aqua therapy article below)
Typically no other therapy, or a very very limited therapy program is used in conjunction with the aqua therapy for the first 4 to 6 weeks. They want to make sure your body has time to recover from each water session, which usually lasts anywhere from 30 to 50 minutes, 3 times per week. It will also decrease your allodynia, or sensitivity to touch/vibration after a few weeks. So many of us have a hard time even taking a shower we cannot imagine getting in a pool doing exercises, but it is heaven. After a few weeks you so look forward to your time in the water. The shakiness or weakness in your legs would improve over time.
Keith is reading a book right now by Doctor Tim Sams called "ABC's of Pain Relief and Treatment". He urges anyone out there to buy a copy. It is very well done. In it he talks about everything under the sun regarding pain but specifically regarding physical therapy he states
"Chronic pain is not simply acute pain that doesn't go away", and " If short-term and long-term pain were not the same thing, then why would the treatments for acute pain make chronic pain go away? The answer is that they do not. The treatments for acute pain can be helpful at best and occasionally destructive at worst." Very well stated.
Over and over Miss V, your Drs and therapists were putting you through acute pain physical therapy treatments, the aggressive 2,3, and 4 hour long exercies, the hot/cold contrasts, ice treatments, etc. Even most of those "desensitzation machines" are miniature torture chambers for CRPS patients. Gentle exercises meant to improve ROM are the key, such as , yes, aqua therapy, and eventually walking, stretching, but it needs to be gradual.
For chronic pain patients the relief of pain is the goal of PT, but not for chronic pain patients. Here is where there is often a communication problem. patients think they are going to PT to relieve their pain and are disappointed when they don't get pain relief from PT, especially within the first 3 to 5 weeks. Chronic pain patients goals in PT need to be increasing ROM (range of motion). Get the body moving. Eventually there may be pain relief obtained from an increase in ROM, possibly, but it may take 8 to 12 weeks, maybe longer, depending on how long the patient has had the disease and/or been incapacitated or been guarding their ffected limb(s). But the immediate goal is to increase ROM, to simply get the patient moving again.
Check out our Physical Therapy section for more information.
YOU SAID THAT YOUR RSD WAS FULL BODY, WHERE IS YOUR RSD NOW?
7) By full body I mean my RSD is in every spot of my body, and I feel it at times in my mouth and throat as well (Maalox works sometimes for that).
Hmmm, sounds like what is going on in your throat and mouth could possibly be aligned with acid reflux or GERD. It is not uncommon for RSD patients especially those who have been or are taking a lot of medications. One thing that can help this are the yogurt shakes that you can buy in the grocery store. If you drink one at bedtime it can help prevent the acid from working its way up your esophagus when you lie down at night, usually the worst time for GERD. GERD can be extremely painful, it feels like your throat is on fire, makes it difficult to swallow and/or eat anything. Why do these drinks help? Probiotics. You can pay lots of money to get fancy probiotics or you can just buy yogurt shakes, same result :)
But understand, without being a medical Doctor and without a medical examination, these are really just guesses based on what you have shared and what we have learned over the years and through personal experience.
As to full body RSD, this is a tricky thing as well. We are not saying you don't have it full body. That needs to be determined by a Dr doing a clinical diagnosis. However, only 8% of all RSD patients do have it full body or systemic. We hope and pray you do not have it full body. Keith's RSD started in my eyes when he was 14. After an auto accident in 1985 when he broke his back, it went full body. It spread to his feet, legs, then hands, arms, etc. Typically full body RSD patients have some type of spinal injury that precipitates the RSD, that is why it spreads full body so quickly and easily, the damaged/affected nerves are in the spine. But every case is different.
Many patients, between 70-80% of patients do have their RSD spread from its original site though. For some it is mirrored, as you mentioned; going from one foot to the other, or one hand to the other. Sometimes it spreads from the hand to the shoulder, known as "shoulder-hand syndrome". Sometimes one entire side can become corrupted. In most cases RSD sticks to the limbs but in rarer instances it can involve the face, back, chest, etc.
Here is the tricky part, this is what makes RSD so much of a pain for Drs and patients alike to treat and diagnose. You can have RSD confined to one limb but have some symptoms in another but that doesn't mean it spread to the other limb. In other words, just because you have some symptoms of RSD all over your body does not mean you have full body RSD. Confusing?
The key component of RSD is burning pain, that absolutely intense feeling of your limb constantly being on fire. But there are three other basic symptoms as well that are typically present. Understand that not all four main symptoms will always be present in all patients all the time.
2) Inflammation - This is not always present. It can take various forms, the skin may appear mottled, become easily bruised, have a shiny, dry, red, and tight look to it. An increase in sweating usually occurs as well.
3) Spasms - (in both blood vessels and muscles of the extremities) - The spasms can result in a feeling of coldness in the affected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back.
4) Insomnia and Emotional Disturbance -(this is the one that most people don't learn enough about and many Drs don't understand) - RSD affects the limbic system of the brain. This causes many problems that might not initially be linked to a disease like RSD. Chief among them are Depression, Insomnia, concentration difficulties, irritability, and short-term memory problems.
Often times what happens is that when a patient has these symptoms, such as spasms, inflammation, in other parts of their body they feel the RSD has spread all over, even if they don't have the burning pain all over. (You can read more about the symptoms of RSD by clicking on the link at the bottom of this message) So our question would be to you Miss V, does every part of your body burn constantly? Do you burn all over? I hope and pray your answer is no. We wouldn't be surprised if you said your arms and possibly even your legs all do. But spend a few minutes, feeling your body in your mind, feeling the differences between your hands, your arms, your legs, your feet, and see if there is a difference in the pain, in the burning. Is there burning in all your limbs? Is there burning in your back? In your face? In your eyes? Your ears? Your chest? Your stomach?
Unless your answers to these questions are all yes, you can safely say you do not have full body or systemic RSD/CRPS. trust us, this isn't something you want. Many treatments won't even be considered if you have full body RSD. But also knowing whether or not you truly have full-body RSD is something good to know yourself. For anyone out there reading this. Again, a true definition would need to be undertaken by an RSD-qualified Dr. I would venture to guess you have had trouble finding one of those. Most RSD patients see an average of 8 to 10 Drs before they get correctly diagnosed.
WHAT ARE YOU DOING NOW?
8) I am doing a home PT program, using lyrica, neurontin, darvocet, valium, cymbalta and amitriptyline.
Boy. we don't really want to get into the whole drug issue. it is so different for everyone. We are concerned about the valium, darvocet, and neurontin combination though. We do have a section that discusses Drug Therapies for CRPS.
a) We think baclofen has been discussed a lot on here,(listserv this question was asked on) a fairly common anti-spasmodic, excellent for the muscles spasms you mentioned.
b) Darvocet is really an acute pain med and not a chronic pain medication. It is used primarily to treat mild to moderate pain. We would venture a guess that you aren't getting much in the way of pain relief from that.
c) Valium, sometimes known as diazepam, is an anti-anxiety medication. sometimes used to treat seizures. Neurontin is an anti-seizure medication that for years was proffered as a pain medication until the federal government sued them to stop making false claims. (see articles below), some few Drs still use it. It is curious as to why you are on two of these.
d) Lyrica we knowit is very popular right now but it remains to be seen if it is really of any benefit. Watch out for the weight-gain issues.
e) Ami - tricyclic antidepressant, typical med for Docs to use early on for RSD.
We think there are better medications you could be on and are sure other patients here on the list could share what they as fellow teens are taking that is helping them. We would guess based on these meds that you are probably still having issues with muscle spasms, sleep problems, and in a good amount of pain.
WHAT IS YOUR CURRENT DOCTOR DOING?
9) I had one LSB, after which the other PM Dr (not the one I usually see) decided not to do anymore because the last only lasted 2 hours and he doesn't believe it's RSD (which is reasonable to say, as he said I didn't have certain symptoms that I really do have!). I don't know at this point what is going to happen with the nerve blocks. ?)
Well, quite a mouthful for him to say based on one block. Let us do two things;
So Miss V. Having said all of that ... whew ... Is it too late to change things around? To get back in the water? Not at all Vanessa.
We are not Doctors or medical professionals. Be sure to consult your Doctor before stopping or starting any medical programs and/or medications.
Thought some of you might like to read this. It is something I wrote for the RSDHope teen corner. Miss V is a teen who has struggled with a very nasty case of RSD. Started out as a simple injury but progressed rather rapidly, due it seems to poor treatment choices on the part of some of her Drs who may not have been too well-informed about RSD. Vanessa was kind enough to share her experiences with the group, she is a brave young lady.
Vanessa's letter to Miss V:
Miss V;
Sorry it has taken me so long to get back to you. There have been so many people emailing, calling, and writing in the past few weeks. So many sad stories, so many people needing help. I don't know if more people are being diagnosed or more people are getting RSD/CRPS. I am hoping it is the former.
Anyway, thank you for answering my questions, I appreciate that. I asked them because I was trying to determine how your RSD traveled forward so quickly in so short a time. I had a feeling but wanted to make sure my guess was accurate. Seeing what you had written, especially what they did to you in physical therapy, it doesn't surprise me the course your RSD has taken. I think your case is very typical of patients who present with a simple case of RSD and then have it spiral out of control due to physicians and/or physical therapists who are not up to date on treating RSD or frankly, don't know how to treat it at all. The patients pay the price in the end.
Let me get to your responses and I will show you what I mean. Hopefully others can learn from what happened to you. I apologize for the length of this email but I wanted to address each of the questions as thoroughly as possible since there have been many others who have had similar issues.
(Miss V's responses are in italics)
Keith, I certainly don't mind answering the questions! It'll take me a while to get this typed up as my hands are unsteady, but I will answer them all... :)
1) The 13 months prior to diagnosis-- from October 2005- September of 2006 I had intermittent bouts of shooting pain up my arm, and I just ignored it (it wasn't that bad, and I didn't know what it was, but I knew it came from the thumb crushed in car door injury). In September I finally saw a chiropractor. Thinking that I had a pinched nerve, she (the chiropractor) gave me an adjustment and told me to come back twice a week for 6 weeks. That night, after the adjustment, the pain in my arm and right shoulder/ right side of my back as well as my neck was horrendous!
While there are some patients who say they are helped by chiropractors, it is usually because they work on the parts of the body that are not affected by the RSD. The manipulations can sometimes be helpful. But problems can occur when they try to manipulate those areas involving RSD, where the nerves are in a state of hyperactivity and/or disrepair. It is easy to further damage these nerves and/or the surrounding nerves by the use of physical manipulation. Even if you appear to feel better at that moment, the hours later, that night, or days later you can experience a "rebound" effect where your pain will spike. This can be permanent or temporary depending on the extent of the damage. This is also the same reason why intense physical therapy involving the RSD limb(s) can be detrimental. In addition, most RSD patients have extreme sensitivity to touch/vibration so this manipulation can be very painful in and of itself not only at the time but also can have a "rebound" effect later; meaning later that day or the next day your pain can be much worse.
HOW HAVE YOUR DOCTOR VISITS BEEN?
2) It was horrible, and I ended up seeing an ortho surgeon, who sent me for 3 weeks of PT. After a week the pain stopped, and then returned again. A visit later to the ortho surgeon and he just wanted to send me back to PT, telling me that I just needed to do PT and I'd get better. I was in tears. The pain was so bad I was crying and he was just offering me pain killers and basically kicking me out of his office, as if I was pretending I was in this pain
Boy, how often do we hear these things? "Take a pill, you'll feel better!", "You aren't really in pain, quit faking!". As if that is all we needed to do and/or hear! How many of you wish you could plug your Drs into your body for five minutes when you go to see them, so they can feel exactly what you feel? How likely would you be to come away with hearing 'You are exaggerating your pain"? Not very. More often than not they would unlug, look at you, then break down in tears and hold you out of compassion. Then compose themselves and say, "How can I help make you better?" Wouldn't that be a switch? How truthful would the words "The Doctor will see you now" become then?
3) I talked with my primary care doctor after this visit and when my hand started swelling/ turning purple/ cold. She told me what orthopedic doctor to go to, and so I went to get a second opinion This ortho (new one) told me I had RSD, and she started me on percocet and neurontin, as well as sending me to intense PT (which started out as 2 hours and toward the end of PT was 4 1/2 hours long!). I did desensitization, ROM exercises, stretching, strengthening and aerobic exercises.
So, you finally got diagnosed, but then she puts on what many would consider to be the wrong medications and the wrong physical therapy! Percocet is an acute pain medication. Acute pain and chronic pain are not the same thing, they cannot be treated with the same pain medications. Nor can patients with chronic pain conditions be treated with the same physical therapy programs be treated as those with acute pain, the goals are completely different so the therapy must be. (see below for more info), 4.5 hours of PT for an RSD patient is much too long, especially if it is the wrong kind of PT. Then you run into diminishing returns and the patient ends up worse than before. Is that what happened?
DID YOUR RSD SPREAD FROM ITS ORIGINAL LOCATION?
4) In the beginning of December the RSD moved to my left hand/ arm/ shoulder (mirror image spread). In the end of January the RSD spread to my feet/ legs, after running 1/2 mile the past day. Everyone tried to convince me that it was just muscle pain, and I had pain because I hadn't ran since August. I kept telling everyone that it was the RSD, and that I had the RSD pain and the symptoms as well (color/ temp change, sweating, swelling, muscle spasms/ twitching and started to get an ulcer). PT was started for my feet/ legs the next week.
Spread is a tricky thing. See more information on this below when we discuss "full body" or "systemic" RSD. It is quite possible yours did spread to your feet/legs. usually it is a more gradual thing, happening over the course of weeks or months, but with RSD there are no absolutes. In addition, as we note below, many patients, between 70-80% of patients, do have their RSD spread from its original site though. For some it is mirrored, as you mentioned; going from one foot to the other, or one hand to the other. Sometimes it spreads from the hand to the shoulder, known as "shoulder-hand syndrome". Sometimes one entire side can become corrupted.
WAS ICE USED DURING YOUR PHYSICAL THERAPY?
5) Yes, ice was used for 3 weeks. Then I read about ice/ RSD and stopped the use of all ice. After that I did contrast baths and heat only (used a fluido for desensitization, as well as texture rubs). Fluido for just arms? ( This produces a physical effect similar to the whirlpool, except it provides a dry heat environment using finely shredded corn husks warmed to a temp. of 102 to 122 degrees F. )
Ok folks, here is a HUGE part of the problem and probably where your RSD did another big turn. Your first may have taken place when you went to the chiropractor, next when you had that aggressive physical therapy, and now the use of ice and hot/cold contrast baths. You did great when you stopped the ice, some damage had already been done though. BUT, the hot/cold contrast baths continued the damage.
6) I did aquatic therapy for 3 weeks, after which my walking went so downhill that I cannot walk unassisted, and use a walker around my home, and a wheelchair to go places. The therapist there was so scared that something was going to happen to me because of the shakiness in my legs.
Three weeks is a start but it should have been months not weeks. It should be a minimum of 6 weeks before your first evaluation in any case. It isn't easy at first but it makes such a huge difference in the long run. A big part of the problem was probably all of the possible damage they did to you before you got into the water; the ice, the hot/cold contrast, the aggressive land therapy, etc. Your body has been so battered it doesn't know which way is up. We would recommend checking out the aqua therapy article we have on the website. It was written by an occupational therapist and is well written. (see aqua therapy article below)
Typically no other therapy, or a very very limited therapy program is used in conjunction with the aqua therapy for the first 4 to 6 weeks. They want to make sure your body has time to recover from each water session, which usually lasts anywhere from 30 to 50 minutes, 3 times per week. It will also decrease your allodynia, or sensitivity to touch/vibration after a few weeks. So many of us have a hard time even taking a shower we cannot imagine getting in a pool doing exercises, but it is heaven. After a few weeks you so look forward to your time in the water. The shakiness or weakness in your legs would improve over time.
Keith is reading a book right now by Doctor Tim Sams called "ABC's of Pain Relief and Treatment". He urges anyone out there to buy a copy. It is very well done. In it he talks about everything under the sun regarding pain but specifically regarding physical therapy he states
"Chronic pain is not simply acute pain that doesn't go away", and " If short-term and long-term pain were not the same thing, then why would the treatments for acute pain make chronic pain go away? The answer is that they do not. The treatments for acute pain can be helpful at best and occasionally destructive at worst." Very well stated.
Over and over Miss V, your Drs and therapists were putting you through acute pain physical therapy treatments, the aggressive 2,3, and 4 hour long exercies, the hot/cold contrasts, ice treatments, etc. Even most of those "desensitzation machines" are miniature torture chambers for CRPS patients. Gentle exercises meant to improve ROM are the key, such as , yes, aqua therapy, and eventually walking, stretching, but it needs to be gradual.
For chronic pain patients the relief of pain is the goal of PT, but not for chronic pain patients. Here is where there is often a communication problem. patients think they are going to PT to relieve their pain and are disappointed when they don't get pain relief from PT, especially within the first 3 to 5 weeks. Chronic pain patients goals in PT need to be increasing ROM (range of motion). Get the body moving. Eventually there may be pain relief obtained from an increase in ROM, possibly, but it may take 8 to 12 weeks, maybe longer, depending on how long the patient has had the disease and/or been incapacitated or been guarding their ffected limb(s). But the immediate goal is to increase ROM, to simply get the patient moving again.
Check out our Physical Therapy section for more information.
YOU SAID THAT YOUR RSD WAS FULL BODY, WHERE IS YOUR RSD NOW?
7) By full body I mean my RSD is in every spot of my body, and I feel it at times in my mouth and throat as well (Maalox works sometimes for that).
Hmmm, sounds like what is going on in your throat and mouth could possibly be aligned with acid reflux or GERD. It is not uncommon for RSD patients especially those who have been or are taking a lot of medications. One thing that can help this are the yogurt shakes that you can buy in the grocery store. If you drink one at bedtime it can help prevent the acid from working its way up your esophagus when you lie down at night, usually the worst time for GERD. GERD can be extremely painful, it feels like your throat is on fire, makes it difficult to swallow and/or eat anything. Why do these drinks help? Probiotics. You can pay lots of money to get fancy probiotics or you can just buy yogurt shakes, same result :)
But understand, without being a medical Doctor and without a medical examination, these are really just guesses based on what you have shared and what we have learned over the years and through personal experience.
As to full body RSD, this is a tricky thing as well. We are not saying you don't have it full body. That needs to be determined by a Dr doing a clinical diagnosis. However, only 8% of all RSD patients do have it full body or systemic. We hope and pray you do not have it full body. Keith's RSD started in my eyes when he was 14. After an auto accident in 1985 when he broke his back, it went full body. It spread to his feet, legs, then hands, arms, etc. Typically full body RSD patients have some type of spinal injury that precipitates the RSD, that is why it spreads full body so quickly and easily, the damaged/affected nerves are in the spine. But every case is different.
Many patients, between 70-80% of patients do have their RSD spread from its original site though. For some it is mirrored, as you mentioned; going from one foot to the other, or one hand to the other. Sometimes it spreads from the hand to the shoulder, known as "shoulder-hand syndrome". Sometimes one entire side can become corrupted. In most cases RSD sticks to the limbs but in rarer instances it can involve the face, back, chest, etc.
Here is the tricky part, this is what makes RSD so much of a pain for Drs and patients alike to treat and diagnose. You can have RSD confined to one limb but have some symptoms in another but that doesn't mean it spread to the other limb. In other words, just because you have some symptoms of RSD all over your body does not mean you have full body RSD. Confusing?
The key component of RSD is burning pain, that absolutely intense feeling of your limb constantly being on fire. But there are three other basic symptoms as well that are typically present. Understand that not all four main symptoms will always be present in all patients all the time.
2) Inflammation - This is not always present. It can take various forms, the skin may appear mottled, become easily bruised, have a shiny, dry, red, and tight look to it. An increase in sweating usually occurs as well.
3) Spasms - (in both blood vessels and muscles of the extremities) - The spasms can result in a feeling of coldness in the affected extremity as well as body fatigue, skin rashes, low-grade fever, swelling (edema), sores, dystonia, and tremors. The spasms can be confined to one area or be rolling in nature; moving up and down the leg, arm, or back.
4) Insomnia and Emotional Disturbance -(this is the one that most people don't learn enough about and many Drs don't understand) - RSD affects the limbic system of the brain. This causes many problems that might not initially be linked to a disease like RSD. Chief among them are Depression, Insomnia, concentration difficulties, irritability, and short-term memory problems.
Often times what happens is that when a patient has these symptoms, such as spasms, inflammation, in other parts of their body they feel the RSD has spread all over, even if they don't have the burning pain all over. (You can read more about the symptoms of RSD by clicking on the link at the bottom of this message) So our question would be to you Miss V, does every part of your body burn constantly? Do you burn all over? I hope and pray your answer is no. We wouldn't be surprised if you said your arms and possibly even your legs all do. But spend a few minutes, feeling your body in your mind, feeling the differences between your hands, your arms, your legs, your feet, and see if there is a difference in the pain, in the burning. Is there burning in all your limbs? Is there burning in your back? In your face? In your eyes? Your ears? Your chest? Your stomach?
Unless your answers to these questions are all yes, you can safely say you do not have full body or systemic RSD/CRPS. trust us, this isn't something you want. Many treatments won't even be considered if you have full body RSD. But also knowing whether or not you truly have full-body RSD is something good to know yourself. For anyone out there reading this. Again, a true definition would need to be undertaken by an RSD-qualified Dr. I would venture to guess you have had trouble finding one of those. Most RSD patients see an average of 8 to 10 Drs before they get correctly diagnosed.
WHAT ARE YOU DOING NOW?
8) I am doing a home PT program, using lyrica, neurontin, darvocet, valium, cymbalta and amitriptyline.
Boy. we don't really want to get into the whole drug issue. it is so different for everyone. We are concerned about the valium, darvocet, and neurontin combination though. We do have a section that discusses Drug Therapies for CRPS.
a) We think baclofen has been discussed a lot on here,(listserv this question was asked on) a fairly common anti-spasmodic, excellent for the muscles spasms you mentioned.
b) Darvocet is really an acute pain med and not a chronic pain medication. It is used primarily to treat mild to moderate pain. We would venture a guess that you aren't getting much in the way of pain relief from that.
c) Valium, sometimes known as diazepam, is an anti-anxiety medication. sometimes used to treat seizures. Neurontin is an anti-seizure medication that for years was proffered as a pain medication until the federal government sued them to stop making false claims. (see articles below), some few Drs still use it. It is curious as to why you are on two of these.
d) Lyrica we knowit is very popular right now but it remains to be seen if it is really of any benefit. Watch out for the weight-gain issues.
e) Ami - tricyclic antidepressant, typical med for Docs to use early on for RSD.
We think there are better medications you could be on and are sure other patients here on the list could share what they as fellow teens are taking that is helping them. We would guess based on these meds that you are probably still having issues with muscle spasms, sleep problems, and in a good amount of pain.
WHAT IS YOUR CURRENT DOCTOR DOING?
9) I had one LSB, after which the other PM Dr (not the one I usually see) decided not to do anymore because the last only lasted 2 hours and he doesn't believe it's RSD (which is reasonable to say, as he said I didn't have certain symptoms that I really do have!). I don't know at this point what is going to happen with the nerve blocks. ?)
Well, quite a mouthful for him to say based on one block. Let us do two things;
- There is a section on our site called Nerve Blocks. It explains in very good details information about the various types, what can be expected, hoped-for-results, etc.
- Explain to you that it isn't surprising that your block didn't work. After the first 3 to 12 months blocks aren't very likely to have much affect at all. They may raise the blood pressure in the affected area a little, bringing some color back, drop the pain level a bit, etc. but these effects are VERY transitory and minimal at best. Plus, your RSD has been accelerated because of the aggressive therapy, use of ice, hot/cold contrast therapy as noted above so your RSD is actually beyond however many months it has truly been anyway, so it isn't likely blocks would do anything.
So Miss V. Having said all of that ... whew ... Is it too late to change things around? To get back in the water? Not at all Vanessa.
- We would suggest convincing your Dr to get you back in the water as quickly as possible. To get back in to doing aqua therapy in a nice warm water pool. To stop any therapy, if it still happening, that involves ice or hot/cold contrast therapy. However you have to do it.
- Understand we are not Doctors or medical professionals. The information we have shared here is based on what we have learned over the last decade plus as well as what we have gathered from Drs and other medical professionals, and what is available on our website and others.
- Do we think mistakes were made in your treatment? Quite possibly. Could they have contributed to your RSD being accelerated and spread? Again, quite possibly. Would it have done so anyway and just taken longer? No way of knowing. Does it happen to other patients as well? All too often. But maybe there are other patients out there, at the beginning of their RSD cycle, who can read what you and I have shared here and learn from what happened and prevent any mistakes from happening to them.
- Educate yourself, your Dr, and your loved ones. You know the Drs who are treating you. Some are amenable to information obtained from the internet, others still view the internet as it was years ago, a dumping ground for anyone and everyone's opinion. Today however it is chock full of actual factual information, studies, and articles written by Drs, researchers, and others who can back up what they write.
We are not Doctors or medical professionals. Be sure to consult your Doctor before stopping or starting any medical programs and/or medications.
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