CRPS DOESN'T MEAN YOU HAVE TO STAY AT HOME

I wish to suggest that a man may be very industrious, and yet not spend his time well. There is no more fatal blunderer than he who consumes the greater part of his life getting his living. All great enterprises are self-supporting. The poet, for instance, must sustain his body by his poetry, as a steam planing-mill feeds its boilers with the shavings it makes. You must get your living by loving.

I often get the question, "Now that I have CRPS what am I supposed to do? I can't work anymore, I have most most of my friends, many of my family doesn't understand ... all I want to do is stay at home because I hurt so much and the less I do the less I am going to hurt more."

I do understand. Having had this disease for 3 1/2 decades now, as well as other forms of CP, I know all too well the social issues that go along with having a chronic disease enter your life;

1) Friends fall by the wayside as you are no longer able to do the fun things you used to do together.

2) Family members who may not take the time to learn about your disease may feel you are "letting your pain control your life", or even that you are exaggerating your pain. Especially when it comes to a disease like CRPS that is so little understood.

3) Many patients lose their home and/or much of their life's savings due to medical bills, lost wages, etc.

4) Struggles within the family unit as the stresses due to all of the above and the actual disease itself impact the family like an atom bomb going off.

It is easy, considering all of the above, to let yourself curl into a ball, hide in your home, stay on the couch, and hide from the world. But thinking that by doing so you will be in less pain, by avoiding any possible behavior that could increase your pain will only serve to further insulate yourself and could put you into a deep depression.

Your pain will be there, still be there, whether you leave your house or stay. Whether you venture out into the world or stay and watch ten hours of TV a day. So you have a choice;

1) Get involved somewhere, out there.

2) Stay in your cocoon and build more layers of protection, further separating yourself from life.

If you do venture out it is true, you will probably increase your pain somewhat, for a short time. But it may just improve your quality of life. So now you may ask, What is I can do? My pain doesn't allow me to do much of anything for any length of time? I can't work, I can't do the activities I used to do? What's left?

A good way to get back involved in the world is to volunteer. Volunteers are needed all over the country, the world. In every aspect of your community. Do you like animals? Volunteer at an animal shelter. Belong to a church? There are many opportunities there. Like working with kids or young adults? Talk to your local school or community center. Have business experience to share? Talk to your local Rotary Club or Community College.

There are some wonderful reasons why volunteering works for people with chronic illness;

1) You can almost always set your own hours, how much you work, how often, which days, etc. Volunteer as little as two hours a week or three days a week, whatever your pain will allow you to do.

2) You are able to work with the volunteer coordinator, explaining your disability and why you are limited in the time you can volunteer. They are used to working with the disabled and working around your limitations.

3) These types of organizations are extremely appreciative of any assistance you can provide.

4) It is a very rewarding experience.

5) It gives you a mini-vacation from your own pain.

6) It opens you up to a whole new group of people who don't know you as that "person with CRPS" but rather as that new volunteer with the great attitude. And usually the other volunteers are also very nice people with very positive outlooks.

All these thing combined help to give you a more positive spin on life in general, even if you are only there a few hours a week.

I volunteer, not only with American RSDHope but with a local organization. It isn't easy and it is only for a few hours a week. There are many weeks where the day after I volunteer I am in a great deal of pain. But even with the extra pain, it is worth it.

My parents always taught me; Gods gift to me was my life, my gift to God was what I did with it. Whatever your religious beliefs, man has a debt to his fellow man. And if if it helps you in the process? More the better!

peace to you this holiday season. May you start out the new year with a renewed sense of purpose!

Keith

American RSDHope

www.RSDHope.org

HOW TO COPE WITH CRPS / RSD ON A DAILY BASIS?

Hello Everyone!


Back to School time for many of you, either for yourself or your children/grandchildren means some added stress. Remember that that can also mean some additional CRPS pain, especially if you don't allow some extra down-time. Find some quiet times and some quiet corners during your day and evenings where you can be by yourself or at least where you can exert a increased level of control over the sound, noise, and vibrations and thereby reduce your pain or at least keep it from spilling over the top :)


Practicing these techniques and actively thinking about them each day can help you significantly. Try to make it part of your PCP; Pain Control Package;

1) DIET - Certain foods can make your pain better or worse, check out the chronic pain diet.

2) EXERCISE - especially aqua therapy in a warm water pool. The wrong types of PT an do a great deal of damage.

3) MEDICATION - The right combination of medication that addresses all your symptoms, just enough so you can function but not so much that you are sleepy.

4) ATTITUDE - How you approach your disease, how you decide to live with it, in spite of it, makes all the difference.

5) MEDICAL TEAM - Having a good physician, pharmacist, and for some, a psychiatrist, is very important in the management of the disease.

6) MANAGE YOUR ENVIRONMENT - This simply means BE AWARE of what in your house, workplace, friends home, etc. causes your pain to increase or decrease and adjust accordingly; A/C, fans, noise, dogs, children, TV, rest, neighbors, loved ones, stress, etc.

7) EDUCATE YOURSELF AND YOUR LOVED ONES - Use sites like American RSDHope and the RSDSA to learn about the disease. Arm yourself with the correct information and beware of sites with outdated and incorrect info.

The bottom line is that even though CRPS is ranked as the most painful form of chronic pain that exists today, if managed well, CRPS isn't a death sentence, don't live your life like it is.

NEW ARTICLES

For those of you who are new to the website, we don't normally send out many bulletins. People pretty much know where to look on the website for the latest additions to the website. We have MEDICAL ARTICLES sections, COPING WITH PAIN ARTICLES sections, etc. Inside those are many, many sub-sections and hundreds upon hundreds of articles with some of the latest information including the source URL's.

We put some of the new articles in the WHAT'S NEW section at the top of the website but not all so be sure to check into your favorite sections at least once a month or every couple of weeks. If you come across a chronic pain or CRPS article you believe fits on the website please email it to RSDHope@mail.org for consideration.

We also have very popular sections on Poetry by CRPS patients, humor sections and more. if you have submissions for those sections please send it to the same place :)

We have an on-line catalog where you can buy CRPS/RSD Awareness items with the profit going to American RSDHope's awareness programs or to sustain our organization. We have everything from T-shirts and sweatshirts with the national CRPS/RSD Awareness ribbon on them to national awareness bracelets and the national CRPS/RSD Awareness ribbon magnets for your car, and much more. Just pop by the website and you will find the link at the top of the page.

www.RSDHope.org



MENTOR PROGRAM

Our Mentor program is always looking for new Mentors. It is one of our busiest programs and if you are interested in helping your fellow pain patients, drop Karen and/or Lynne an email RSDHope@roadrunner.com

You can read more about the Mentor program on the website :)


ROCHESTER, NEW YORK - PHYSICAL THERAPIST

If anyone lives in the Rochester, NY area we have a patient who is searching for a Physical Therapist in the area who has a very good knowledge of CRPS and how to treat it. As we all know there is a world of difference between someone who knows how to treat CRPS and someone who doesn't. Far too many patients have been advance through the stages of CRPS by incorrect physical therapy; such as the use of ice, ice packs, hot/cold contrast therapy, etc. The damage to the nerves becomes so extensive the patient not only has their pain worsen but many times it spreads as well.

So if you happen to know of a CRPS-experienced physical therapist in the Rochester, NY area, please send an email with their information to RSDHope@mail.org and I will pass it on to them.

QUESTIONS ON MEDICATIONS, NERVE BLOCKS, TREATMENTS, etc.

We get lots of emails from patients concerning which medications they should be taking, what nerve blocks they should try and when, which treatments help, don't help, questions concerning physical therapy, etc. While we enjoy hearing from everyone most of the questions we get have been answered in great detail on the website and so we usually end up referring people back to the website.

The information there has been gone over by physicians, checked, re-checked, and is the most up-to-date available. We also tried to put it in very understandable language. Sometimes these things are written so only those with Phd's can understand them, which is fine if you have one but if you don't you are SOL.

There are separate sections on the website for everything from Drug Therapies to Nerve Blocks, CRPS Descriptions to Stages, to the latest articles on everything from Medication to those standing strong in the struggle. Need a boost? Check out the Poetry section. Need a laugh? Check out the humor section.

Information regarding this disease has come a longer way and we are blessed in that we patients and loved ones can educate ourselves a hundred times over what used to be possible. Take advantage of it.

So always check the website first. Use the Search box if you aren't sure where to look or use the link at the top of the website (navigating the website). You will learn your way around pretty quickly. You can send any page on the site via email to your friends and family as well. Doing it this way saves you time and you can get more concise answers.

American RSDHope

But don't forget to drop us a line once in a while too. It gets cold and lonely up in Maine in the winter time!


SUPPORT GROUPS

We have been getting a lot of emails from people wanting to start a local support group and not sure how to go about doing it. Having worked with a local group for about a year now I can tell you first hand it isn't an easy thing even if you have a great group of eager individuals. It takes a key group of dedicated people to get it off the ground and then to keep it going.

So, we need some of the long-lasting groups out there to send us your suggestions; what have you done to keep your meetings interesting? To keep your members coming every month, or other month? How did you get your group started and what would you recommend yo someone else who is just starting? What mistakes did you make they should avoid? What special events have you held that were successful? What else would you care to share?

Send these tips to RSDHope@mail.org and we will place the best ones on the website in the Support Group area for all to enjoy and benefit from! Thanks everyone!

That's it for now!

Thank you,

Have a wonderful day everyone! Thanks for visiting American RSDHope and for all of your kind emails, post cards, and letters and of course, your very generous donations. We survive on your donations, they keep us going and help us to provide our information to the thousands who visit our website every month! Eleven Million hits and counting!

You can make your donations directly to the website American RSDHope

All tax deductible of course!

Peace;

Keith, Karen, and Lynne!

American RSDHope

www.RSDHope.org

NOVEMBER IS NATIONAL CRPS/RSD AWARENESS MONTH

JUST A REMINDER !!!

SEPTEMBER IS PAIN AWARENESS MONTH

September is Pain Awareness Month and the American Pain Foundation is asking everyone to help spread awareness by signing a petition.

Here is a quote from the text on their website;

" In recognition of September as Pain Awareness Month, the American Pain Foundation (APF) announces the launch of the Conquering Pain Together project (www.conqueringpaintogether.org). “Conquering Pain Together” is an exciting new public awareness campaign that will be the focus of our efforts during the month of September—there are ways forEVERYONE to contribute to this campaign! Professional presentations and community events are planned in communities throughout the country to highlight the need for improved access to appropriate and effective pain care. The Conquering Pain Together site directs visitors to an online “I COMMIT” petition (don’t wait, sign on NOW!) and features a list of planned local activities to bring the topic of pain to the forefront. The site also includes an easy-to-use toolkit with materials to raise awareness about pain issues in communities and information about what YOU can do for the first-ever National Day of Action scheduled for September 26th. WE ENCOURAGE YOU TO TAKE ACTION AND JOIN THE MOVEMENT. "

If you visit the American Pain Foundation website you will see the story on September being Pain Awareness month and the link to the Petition. Pass it along to your friends!

In other news, we just sent out a little news bulletin, not really a newsletter just a few simple thoughts we wanted to pass along. I will share some of them in the next blog, which I will publish in a few minutes, in the hope that they will help some of you.

Peace,

Keith

American RSDHope

CRPS - Why don't all injuries end in CRPS?

Why don't all injuries end in CRPS/RSD?

Sorry it has been a while since I have posted on the blog. I have been having some connection issues with verizon. Still not much better but now and then I can get through and get caught up.

Just a quick one today to see how it is going to work. 

We get this question a lot, why don't they all end in CRPS? 

I ask myself this question every time I watch America's Funniest Home Video's and see those people; fall off houses, off of bikes, landing on their backs, bouncing their bodies on the sidewalk, and a hundred other ways they get look to get injured but seem to bounce right back up and even laugh it off. 

I don't know whether to cringe or call them an idiot or both. Usually both.

While at the same time we hear from people who have developed CRPS from things as simple as stubbing their toe or maybe while just playing sports or enjoying their favorite activity, but not doing it in a crazy way. 

So why do some get the horrible life-changing pain and others seem to bounce through life like a drunken bowling ball in a lane with bumpers? 

I have only seen one study so far that really addresses the issue in a scientific way. There have been other articles written where people have made educated guesses as to why some people are more susceptible. But these guestimates have as many ridiculous answers as they have plausible ones.

But the credible study described how they believe that the brains of CRPS patients, and those who suffer from CP in general, are different. That our pain pathways are actually wider allowing for more pain signals to pass through increasing the likelihood of a chronic problem to set in.  That is a watered down version of the research of course but you get the gist. 

They didn't find any certain type of personality was more susceptible but it does seem that more Type A personalties have the disease. 

The RSDSA recently completed a survey of CRPS patients to update the numbers and what they found was interesting. It updated a lot of the numbers that American RSDHope had from their last survey in 1998. Some things did change, such as the number of Drs that were seen before getting a correct diagnosis ( a lot less now) but others didn't (still about a 4 to 1 ratio of women to men). 

I will talk about some of these in my next post assuming this goes off without a problem.

In closing,

I wanted to ask if anyone is affiliated with AT&T and so can help us, American RSDHope, in obtaining a discount on an I-Phone and/or it's accompanying monthly phone charge for one of the board members?

If so, drop us an email at RSDHope@mail.org

Thanks guys!

Peace, Keith

www.RSDHope.org  

Oxycodone dhortage, FDA information

I have to apologize for being gone a while. I have been undergoing some surgeries these last few months. 

In the next blog I will share some tips on how best to handle surgery as  I learned a lot between the two. 

But first I wanted to share some information on a very hot topic; the shortage of oxycodone across the country. This is causing a real problem for chronic pain patients. If you have run into this already and haven't learned why, please check out the following link for more information;

copy and paste the following link into your browser;

http://www.rsdhope.org/Showpage.asp?PAGE_ID=170&PGCT_ID=4733

If you have any questions, drop me a line at RSDHope@mail.org

peace, Keith

How many HBO Treatments does it take for CRPS patients to notice a difference in their pain?

Someone asked "How many treatments does it take to notice a difference?"

I wanted to share the answer here because it is a great question.

It really depends on the patient. There are just too many factors and variables to say specifically; "ten, fifteen, or twenty-five".

You have some patients who have had the disease for 1 year or ten years, have it in one limb or full-body, have CRPS Type I or Type II, or even a combination of the above.

Then you add in the various methods used by different clinics; depths used, lengths of treatments, etc. and you have different success rates.

Then add in how the patients follow the suggestions given in blogs like this and by the technicians themselves regarding how to deal with the treatments; taking supplements, getting enough rest, eating properly, getting through the wall, etc.

So you can see, there is no easy answer. It will be different for everyone.

Hope this helps!

Peace, Keith

American RSDHope

www.RSDHope.org

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