Do Most Doctors Know How to Treat CRPS?

Many patients that have the signs and / or the symptoms of CRPS or RSD go un diagnosed sometimes for months, and other times it can go on for several years!  I would think with all of the diagnostic tools that we have today that it would be a much more advanced process than what patients currently have to go through.



Some patients will see upwards of 100 doctors prior to being properly diagnosed.  That is unacceptable in this century of medical advances.


The problem lays in that there is very little funding going towards Complex Regional Pain Syndrome.  In the United States the majority of the funding is going towards Cancer research, M.S. research, Leukemia and other similar diseases. Yes, these are tragic,  life threatening diseases, but what about the additional funding that is drastically needed for the proper diagnosis and treatment of CRPS / RSD.



It is great that someone is doing research, it is just too bad that it is not in our country. Europe, including London, Germany and Sweden are doing some great research projects to find protocols and medications to treat CRPS and RSD.


Here in the U.S. most physicians that do diagnose and treat these syndromes are Pain Management Doctors.  Unfortunately, the majority of the other doctors either don't know enough about it to diagnosis it, how to treat it or what to do about the syndrome(s).  This is very unfortunate because the longer it takes to diagnose this condition the worse it will become, and as some have said, "If it goes undiagnosed CRPS/RSD can ruin your life - alter the way you do things for the rest of you life.  It will turn your life upside down if left un-attended to and/or un-treated."



Most phsycians in the U.S. want to start with a quick overview, then come up with a treatment plan that includes a variety of medications, possibly a variety of treatments to include Local Blocks, Regional Blocks, Ganglion Block or Lumbar Sympathetic Blocks, Spinal Cord Stimulators, etc...   Where as the doctors in other countries have had success with with some Integrated Medicine protocols, Homeopathic Medicine, Stem Cell Therapy, etc...



Unfortunately,  whether it is traditional physicians or working with Integrative physicians at some point depending on whether your case is making progress, some physicians will get so frustrated that they will not know what to do next... That is the point that they may tell you that they are not sure what else that they can do for you and they are getting frustrated with the case.



It is important that if your physician (s) tell you this that you stand up for yourself.  Find out why they feel that way.  Have a conversation to see if there is anything that you can do or if there are any misunderstandings.  Communication is the name of the game when it comes to your health and ensuring you are getting the best possible treatment possible.



It is hard with this condition because there are so many unknowns.  This is why it is so important to be the most informed patient as possible.  This helps you foremost, and it can help you physician too.

Do not be afraid to speak up, if you don't agree with something then speak your mind.  You have to be your own advocate or no one else will!


For more information feel free to contact me at: rsd.crpsforum@gmail.com.

You can also leave a comment on the blog and I am always happy to answer them.

CRPS Associated with Sleep Disturbances

Chronic pain including CRPS/RSD has become the most common reason for outpatient medical visits. Treatment of chronic pain syndromes (CRPS) and the habitual use/need of opioids have dramatically increased in the past 2 decades. Between 1990 and 1996, the long-term use of oxycodone increased by 23%, hydromorphone use increased by 19%, morphine use increased by 59%, and the use of fentanyl increased 1168%.  This dramatic rise in habitual narcotic use has continued, and the long-term use of opioids more than doubled from 2000-2008.

A bidirectional relationship exists between pain (CRPS patients) and sleep disturbances.  Pain from CRPS fragments sleep continuity, impairs sleep quality, and disrupts normal sleep architecture. Reciprocally, poor quality or insufficient quality of sleep may decrease the pain threshold, impair recovery from injuries, or further exacerbate the pain response.  Thus, as you can see the disturbance in sleep for a CRPS patient or any Chronic Pain patient produces a harmful pattern that only perpetuates the pain cycle.

Painful stimuli produce microarousals, which disrupt sleep continuity and alter normal sleep. Chronic pain or CRPS is associated with increased high frequency EEG activity and a decrease in slow frequency EEG activity. Furthermore, CRPS is associated with the appearance of alpha waves superimposed on slower EEG frequencies, or "alpha-delta" sleep.  In short, pain produces a state of shallow sleep while disrupting restorative slow-wave sleep.

Information from Industry

An estimated 28 million Americans have sleep complaints due to chronic pain syndromes, including CRPS. Among patients with chronic pain, more than 50% experience sleep disturbances, some reports say as many as 70%-88% of patients with CRPS report sleep trouble.  Sleep disturbance shows an independent and linear correlation with pain severity, even after controlling for health measures and sleep habits.

Sleep complaints portend worse outcomes among those with chronic pain or CRPS.  Compared with patients who have no sleep complaints, patients with chronic pain - CRPS and insomnia report poorer quality-of-life indices and have increased healthcare utilization.

In patients with CRPS/RSD, complaints of poor sleep quality and fatigue are just as prominent as complaints of pain.  Similar to other conditions, sleep quality and the pain response share a reciprocal cause-and-effect relationship. Among patients with CRPS/RSD, a poor night's sleep predicts more pain the next day, and more pain predicts greater sleep impairment that night.  Patients with CRPS/RSD frequently experience nonrestorative sleep and alpha-wave intrusions are commonly observed during polysomnography. The prevalence of insomnia, restless legs syndrome (RLS), and hypersomnia are higher among patients with CRPS/RSD than within the general population.  Similarly, OSA is significantly more common, with observed rates of 46%-80% reported among patients with CRPS.

Conclusions

CRPS and disrupted sleep are commonly associated, and they share a clear cause-and-effect relationship. Pain fragments sleep, and poor sleep worsens the pain response. The prevalence of sleep disorders and the number of patients experiencing chronic pain continue to increase. Finally, pain and sleep disorders are among the most common reason for medical care. It is important to understand these conditions and appreciate the intimate relationship they share.

It seems clear that long-term narcotic use causes, precipitates, or exacerbates sleep-disordered breathing; as the use of these agents continues to grow, so will the number of individuals with opioid-induced apnea. Prompt recognition and appropriate treatment will probably improve outcomes and quality of life. It may also reduce overall healthcare utilization and aid in controlling pain.

Unfortunately, until there is a true treatment to put CRPS into remission, there will be a need for opioids or some type of medications to assist CRPS patients deal with the unrelenting pain they dealing with on a continual basis.  If your sleep is continuing to get worse please speak with your physician to ensure that you’re not dealing with “Opioid Sleep Apnea”.

Please feel free to contact me for additional information on CRPS / RSD at rsd.crpsforum@gmail.com, or feel free to leave a message here on the blog!

Treatment options for CRPS / RSD patients...

There are many treatments available depending on whether you are being treating with Traditional Medicine, or Integrated Medicine also called Complementary Medicine.

Most patients that are diagnosed with CRPS or RSD do start out with Traditional Medicine as that is the normal routine that they are accustom to.  Depending on how long it took you to get your diagnosis, how far along your CRPS / RSD is, and to what degree it had already started to attack your body / nervous system… This will set the tone for how aggressive your doctor is to start with. 

Most Pain Management doctors understand this condition and understand how important it is to get ahead of it before it has a chance to move, mirror to other limbs or cause further damage to the affected area(s).

Some of the Traditional Treatment may include the following:

·         Physical and/or Occupational Therapy

·         Medications to help calm down the nerves and assist with sleep

·         Local Blocks

·         Regional Blocks

·         Lumbar Sympathetic Blocks (Ganglion Blocks)

·         Spinal Cord Stimulator

·         Intrathecal Pumps / Drug Delivery system for Chronic Pain patients

For some patients these treatments work and for a larger majority of the patients the above list of treatment options still leaves them with living with the unrelenting pain of Complex Regional Pain Syndrome!  More and more patients, family members, spouses and loved ones are asking the same questions… Isn’t there anything else out there that can help break the pain cycle or help relieve the pain?

The answer is yes.  If you are willing to look outside of the box to Integrated Medicine or Complementary Medicine then you will find more options that are available to you!  At this time there is very little research going on for CRPS or RSD in the United States.   Yet, if you look at Germany and parts of Europe, and they are doing more and more research into these diseases / syndromes.

Going outside of the United States, I have found the following treatment option available for CRPS / RSD.  Unfortunately, the FDA will now allow the majority of these treatments in the United States.  Thus, I had to fly to Frankfurt, Germany on three occasions for treatments and most recently have gone to one of their sister facilities in Mexico for further treatment.

·         Neural Therapy (utilizing Procaine and Ozone in the affected areas)

·         Blood Ozone Therapy (Having Ozone mixed in with your own blood and then put back into your body)

·         Alpha Lipoic IV’s  (This helps the nerves)

·         Lymphatic Massages

·         Ozone tent around the affect limb

·         GcMAF (an injectable drug to increase to immune system)

·         Stem Cell Therapy (utilizing my own blood/stem cells)

·         Thymus Cell Extract

·         Rife

·         Acuscope

·         Biotron

·         Hyperthermia (I was the first CRPS / RSD patient is the world to receive Regional Hyperthermia)

·         Procaine IVs

·         Ozone & Procaine IVs

·         HBOT

·         Homeopathic Medicine

·         Meditation

·         Hypnosis

 

I have to encourage anyone that has CRPS or RSD not to give up.  I know there are days that can be absolutely unbearable, but there is an old adage out there – where there is a will there is a way.  I know it is easier said than done one some days… 

Don’t be afraid to question your doctors, ask for their help and if they say they have nothing else to offer you than to keep you comfortable on medications then it is time to start looking outside the box!

If you have any questions regard any of these treatments or just have general questions regarding CRPS please feel free to post on here or send me an email to: rsd.crpsforum@gmail.com.