CRPS Update - February 15th

Wow, what an interesting bunch of weeks it has been. 

I have been dealing with some medical issues, not related to CRPS, and one of them led to my having surgery. The surgery went well but I developed a problem following the surgery due to the placement of the IV and the amount of time I had cold fluids going into the area of the IV. It caused a lot of swelling and pain. I was extremely concerned about bringing back the CRPS in an area that the HBOT had sent it into remission. 

After two days of using pain patches, increased meds, etc. to no avail, I contacted Dr Spiegel. He is the Dr who did my HBOT. He suggested I come in right away and do a couple of dives to reduce the inflammation, thereby reducing the pain.

WOW!

Even though I have experienced the benefits of HBOT before I wasn't prepared for the immediate relief it gave me. After the first of the two treatments the pain was cut by 75%, after the second and last, it was cut by about 90%. Thanks Dr Spiegel!

People have posted here and emailed me asking how the HBOT relief has held out. It is holding out very well. I am very impressed with the relief I got and how long it has helped. The main areas of my CRPS pain now are pretty much what they were at the end of the treatment. 

Remember, I had it full body. That means from head to toe, all four limbs, face, top of head, neck, shoulders, back, chest, eyes, ears, etc. 

Following my treatments it was reduced to the eyes (original site from 1974), ears, feet, lower left leg, and hands. That is pretty much where it is now. 

Cost? I saw a report that said HBOT was extremely expensive. My question, which they never asked, was "Compared to what?" Plus, it is non-invasive, unlike so many of these other treatments and implants that require surgery or surgeries. But I digress :)

Off I go.

Take care folks. It is rough out there right now. 

Keith 

CRPS Treatments

Oh boy. Lately I have been getting inundated by "patients" writing to me in support of this or that Doctor, or this or that form of treatment for our disease who promise a "cure" for our disease. 

Here is the problem.

They aren't pain specialist, they have no published reports, studies, articles, or anything that shows their "treatment" has been reviewed by their peers and been shown to be an acceptable, credible, and successful form of treatment for our disease.

Most of these new "treatments" or "procedures" aren't even covered by insurance. 

So what is a patient to do? What is someone with CRPS, who is desperate for pain relief, desperate to have en end to their pain, who is being told by a medical professional that they can end their suffering, what are we patients to do when confronted by such a choice? 

All too often we become so desperate for relief that we are more than willing to try anything. We don't always think through the consequences, the long-term ramifications, the possibilities for problems that can result due to this procedure, treatment, machine, protocol, implant, etc. 

I know it isn't the easiest thing to do but we have to stop, think, investigate, and research, ask, and think some more.

1) Investigate both the physician and the procedure, treatment, device, etc.  as thoroughly as possible. Use the internet, check out reputable websites; American RSDHope, RSDSA, NIH, WebMD, etc.  Use these unbiased sources in addition to the Drs or companies own sites so you get a complete picture.

2) Talk to patients. Find a way to talk to patients who have had this procedure 6 months, 12 months, 24 months, and more, ago. Find out if they are still experiencing relief and/or if they have had any complications in the meantime. You may find that some of these treatments show early promise that fades quickly. 

3) Talk to the loved ones of these same patients. They will be less likely to have a "dog in the fight" so to speak and will be able to present you with an outside-looking-in view of how the treatment and results went. 

4) Is the treatment/procedure/device covered by insurance, WC, Medicare, etc.? If not, why not? 

5) Research the Doctor. In this internet age that is very easy to do. 

The bottom line is that patients need to protect themselves. Whatever you do to your body, or allow to be done, has long-term consequences, especially with CRPS. Even something as simple as a blood-test can cause an exacerbation of the disease so that should tell you something. It is an ornery disease :)

There are some wonderful Doctors, nurses, and physical therapists out there who spend every day trying to alleviate our pain. I have been fortunate in my life to have met quite a few. If you are reading this, thank you :)

peace, Keith

American RSDHope

CRPS - HBOT update

Hey all, 

the sun is shining, the grass is green

the orange and palm trees sway 

there's never been such a day

in warm and toasty Tampa Bay ...

and it's December the 23rd .... 

but I am not longing to be up north...

ah, sorry for those up in the great white north digging out from the latest nor'easter. Couldn't resist. Up in my old home-state of Maine, the family says they are digging out from 18 inches of snow just from Sunday's storm. They had 6 inches the Friday before, more a few days before that, and now they have another big storm coming on Christmas Eve.  Oh, it is going to be a long cold winter.

Up north. 

It has been 80 down here for the last couple of weeks BUT there is a chill-a-coming! The temperatures are expected to drop to the mid-70's for the next 7 days. Brrrrrrrrr.  I will have to pull out the long pants. 

Ok, I have had a lot of people ask me how my HBOT relief is doing. I have been remiss in not mentioning it but a lot has been going on down here.

As most of the readers here know, I underwent a series of HBO (Hyperbaric Oxygen) Therapy treatments in Palm Harbor with Dr Allan Spiegel. His clinic, National Hyperbaric Oxygen Therapy, is one of the best in the country. The staff is great, especially Dr Spiegel and his HBOT Technician Phil. 

I did very well. My CRPS went into about 3/4's remission and that ended in September. 

Despite a very severe fall in November that caused issues with my back and new disc issues in my neck, as well as a great deal of extra overall body pain for weeks, and other extra medical issues that I am dealing with right now, my CRPS seems to be doing fairly well. The HBOT is holding in most areas and that thrills me to no end. 

The worst places for me are my feet and lower legs, especially left, and my eyes and ears. Those were the places that weren't touched by the HBOT. The areas that were helped by the hyperbarics are doing pretty well. 

I was sold on this therapy after I went through it and still am. It doesn't work for everyone and it isn't a cure but the relief I have gotten (I have full body CRPS, true full body, head to toe), has been wonderful. 

I may be undergoing some surgery in the coming year and other treatments, not related to the CRPS, so that will be a real test. But the good thing about this type of treatment is that I can always go back for some additional treatments if I need them, and they are non-invasive,  AND they help people recover from surgery even quicker.

So that is the update!  Thanks for tuning in and have a Merry Christmas from all of us at American RSDHope!

Stay warm :)

Keith 

PS - To learn more about HBOT, check out our special section!

CRPS - Weather changes, do they affect CRPS? RSD?

DOES THE WEATHER AFFECT CRPS? 

Now that the winter season is upon us, for most of the country anyway, many patients are seeing changes in their pain although quite a few may not have ever made the connection. In talking to patients I often run into some who do not know that the changes in the seasons cause changes in their pain. They might have noticed that they get colder in the winter, that storms bother them, etc. but did not understand that there is the direct connection.

Barometric changes, especially drops in the BP, can cause increased pain for many patients. These can come from violent storms such as hurricanes and thunderstorms but they can also come with snowstorms and changes in the highs and lows you hear the weatherman describing all the time. 

When you watch the weather next time, pay particular attention to when the next Low Pressure system is moving in and monitor your pain. See if you notice any changes/increases in your pain. Chances are that you will.

The other issue that CRPS patients face in the winter months, especially those who live in the colder, wintry states, is dealing with the extra pain that comes with the extreme cold. 

One of the ways that CRPS patients suffer pain, (and I realize this is oversimplifying things) is from constricted blood vessels. These constricted blood vessels not only cause pain but also restrict blood flow thereby lowering the temperature of the extremities.  When the temperature drops these blood vessels constrict further, increasing the pain and lowering the temperature even further. 

The patient ends up in more pain and an inability to get their feet/hands warm. 

So what do you do, to decrease the pain and effects of the winter?

Well, you could do what I did, move south! It is nearly Christmas and it is 70+ degrees here. But that isn't practical for most people so you need other solutions.

- Layered clothing helps, and definitely you need to keep your hands and feet and head covered as much as possible. 

- If you have access to a warm water pool (85 degrees of more) that is EXTREMELY helpful, not only for raising the temperature in your extremities but also for keeping the chronic pain patient's body in shape and lowering their overall pain level. 

- Soaking in warm water with Epsom Salts is very beneficial. You don't need fancy bath salts/oils but by using epsom salts your body absorbs the magnesium, which helps in restoring normal blood flow. 

- Using microwave moist-heating pads (the kind with beads inside) helps as well. 

What ideas have you tried that have helped? Share them here in the comments!

Have a great day everyone!

Peace, Keith

American RSDHope

CRPS AND MEMORY PROBLEMS

Another in our series of popular questions we get asked at American RSDHope;

I SEEM TO BE HAVING PROBLEMS WITH MY MEMORY. 

IS THAT PART OF CRPS/RSD OR IS IT BECAUSE OF THE MEDICATIONS? 

CRPS/RSD causes short-term memory problems. This is due to problems related to the Limbic system of the brain. In addition to memory problems, changes in the limbic system can also cause depression and insomnia. 

This is part of the Fourth of the FOUR MAIN SYMPTOMS OF CRPS. 

For more information on more symptoms of CRPS/RSD see the following link; ADDTIONIAL CRPS SYMPTOMS

I think that perhaps this is one of the most difficult aspects of the disease to deal with for loved ones; aside from the financial impact and the issue of seeing your loved one in constant pain and having no ability to stop it. Dealing with someone on an everyday basis who forgets so much can be tough; 

"When are we leaving?" "I told you, 3 pm", "No, you didn't", "Yes, we discussed this three times today" , "We did?" . "Wow, that movie looks good." "Yes, it was. we saw it twice already." an hour later ... "This movie looks familiar, I think we've seen it before", "You think?!"

And all of this can happen in the course of one morning!

Not to mention the difficulties that this causes with medications, Drs and medical records/histories, picking kids up, helping with homework, and so much more. It takes special and wonderful people to love CRPS patients!  We appreciate them greatly!

Hope this helps!

Peace, Keith

American RSDHope

CRPS PATIENTS - FLU SHOTS

It is well into flu season and if you haven't gotten your flu shot yet, best get your behind down to your Doctor, your local pharmacy, local clinic, or wherever shots are sold and get one! Or use the new mist if you have an aversion to the shots. 

Most places will accept Medicare for payment for the flu shot. 

Do you need to be careful of the actual injection itself? For fear of it aggravating your CRPS? 

You should always take as many precautions as you can any time you have any type of injections; whether it be as simple as a flu injection (not normally a big deal) or something more involved like taking blood. 

Make sure they do not use any needles in your CRPS affected area; if you have it in your arm/hand, make sure they use the other side for example. If you are having blood drawn, ask them to use the smallest needle possible, even if it takes a little longer to accomplish the purpose. 

Why do CRPS patients need a flu shot? 

Our immune systems are compromised because of the disease and we are more susceptible such things as the flu, coughs, colds, etc. 

Remember, you can't protect yourself from everyone else who carries the virus unless you are protected. The germs are passed on through the air, shopping carts, hand-shakes, door-knobs, and a hundred other things we touch every day.

 

So, take a few minutes and save yourself a winter full of misery. This years flu shot protects against 14 of the major flu's. Not flu-proof but pretty close :)

Keith 

American RSDHope

 

CRPS - RSD - TOP TEN QUESTIONS , CRPS or RSDS?

We continue today in our series of some of the top ten questions we get asked at American RSDHope regarding CRPS. Some of you are probably getting a little confused by the terminology, CRPS/RSDS.

I was excited by something I heard the other day at our local CRPS Support group meeting (besides being one of the directors of American RSDHope I am also a member of a local support group down here in Florida). What did I hear? No, not "Keith, you won the lottery, here is your check for $35 Million!". (that was a couple of weeks ago). No, the good news was that of the four new members we had come last week, two were newly diagnosed (within the last year) and they were given a diagnosis of CRPS and the Dr knew right away what they had!

They actually were a little confused when they went on-line to look up information and saw some of the old terminology "RSD". This was good to hear because;

1) It means they are finally starting to use the correct terminology.

2) They were diagnosed quickly and the Dr knew exactly what they had based on the symptoms they presented (discoloration, allodynia (extreme sensitivity to touch), extreme pain, temperature differences in the affected limb, etc. 

It is something that is reflected in the emails we have been getting and the discussions taking place on-line lately as well. More and more patients are getting diagnosed more quickly and correctly! And they are being given the new diagnostic term CRPS rather than the old diagnostic term RSDS, which is also good. 

This shows that we have been making headway in the national RSD awareness campaign efforts and the educational efforts being undertaken at the medical schools and clinics around the country. It has taken a while I realize to start to notice the change, but at least it is happening.

For those of you who need to be reminded of the DIFFERENCE BETWEEN CRPS AND RSD, check it out :)

Ten years ago it took the average CRPS patient seeing 8 to 10 Doctors before they got a correct diagnosis. I think we need to do a new survey, and I believe we will find out that nowadays that number has been cut in half. 

More patients are being treated correctly as well. Many years ago it was common practice to apply ice packs to CRPS patients from the day they walked into a PT center. They were told when they got home to alternate ice and heat all day long for weeks at a time. When they were at physical therapy they were immediately put into ice baths and told this was the way the disease was treated.

After a few months the patient was so advance in their disease the blocks had no chance of working. 

( RSD/CRPS AND ICE TREATMENT )

For a long time, decades upon decades, Drs treated CRPS patients with sympathectomies in an effort to "cure" the disease. They froze, cut, burned, etc. nerves in an effort to make the pain go away and it wasn't until only a few years ago that the top Drs and researchers in the country came together and realized that in most cases, sympathectomies were actually making the disease spread and/or worsen rather than curing it! Nearly all Drs have since stopped performing these types of treatments. 

As the years have gone on more and more Drs have come to see that the non-invasive treatments are the way to treat this disease. That when you cut or puncture the skin of a CRPS patient you actually run the risk and likelihood of the disease exacerbating. 

Some of the exciting treatments today, like the 5-day low-dose ketamine treatment for example, are the new face of the disease and hold great promise for the future. One day they may very well find a cure for us. In the meantime, we would settle for some understanding, and ome pain relief without any treatment that makes it worse :)

Have a great week-end,

Keith