Living with RSD/CRPS

PASSING BY THE OPEN WINDOWS

2012-05-01T18:49:00.000-05:00

There is a movie called “The Hotel New Hampshire” which was made sometime in the 80’s starring Beau Bridges, Jodi Foster and Rob Lowe. It was about a strange family that loved hotels and experienced great loss. The themes of the movie are finding joy where you can find it despite the circumstances, that life is worth living and finally suicide is not the answer. The term “Passing the Open Windows” means keep living, stay strong and life will get better.

Those of us who live with rsd/crps deal with thoughts of suicide at various times in our lives. One statistic says that approximately 20 % of those who live with chronic pain commit suicide. It is a topic which is discussed openly and frequently in most support groups. You will find that there is no general consensus on the issue but a lot of understanding because at one point or another pain becomes too big, too strong and too constant that all you want to do is let go and rest. I discovered that a person needs two things to hang on thru the worst of the pain. They are things my pain doctors and pain psychologists had told me but; there are some things that you have to find out for yourself.

The first thing is that you have to find that one thing in life that you love unconditionally; that one thing that you cannot see yourself living without. My is my dog, Ozzie. Ozzie lives for me. He is always by my side and when I am in extreme pain will not leave me even if he needs to go to the bathroom or is hungry. One person that I know says that they unconditionally love rice pudding and that is what keeps them moving; another said that for them it is video games. Each person has to figure out that one thing for themselves.

The second thing is that you have to have a purpose in a life. Something that makes you want to get up and face the pain no matter how bad it is that day. I have, after 13 years, finally found my purpose. I am here to help others who are in pain. I do this through two different avenues my blog and working for an organization called Chronic Intractable Pain and You; http://www.cipay.org

My blog is my opportunity to express myself; to be creative and tell others what living with rsd/crps has been like for me. It is an outlet for my feelings and with every tick of the view counter I know that what I have written has touched someone. I will admit that there are times when writing the blog becomes a burden because it is hard for me to think of things that I think people want or need to hear. However, I think that this issue is resolved because I have met some incredible people who are living with rsd/crps and are feeding me topics that they feel I should address.

The second thing that gives my life purpose is working with a group call Chronic Intractable Pain and You; CIPAY for short. CIPAY was founded by a pain psychologist in Nevada who happens to suffer from a pain disease. She wanted to build a place where people in pain could talk with complete freedom with others in pain, find information and resources as well as an advocate when they need to go to the doctor or Emergency Room. I joined the site in May of last year and was approached by the owner of the site about joining the staff. I thought about it and accepted the position. The position is volunteer for the moment but I have been offered a paid position that should come available within the next six months to a year. The work keeps my brain active and I feel a sense of accomplishment and pride that I haven’t felt since before I was hurt.

Some people feel that their lives are over once they develop a pain disease. They feel that it the pain is too strong for them and has taken their life. Those are the people that stay in the bed or the chair and don’t move for months on end. Those people are the ones that will eventually decide that life is not worth living. As for me; I will keep passing the open windows.

What do you weigh Today

2012-04-25T02:25:00.000-05:00

It seems like everyone is always complaining about their weight. America has always been weight conscious and thin is in. People in chronic pain struggle with weight just like everybody else. The only difference is that we often have outside influences that play a major role in whether we lose or gain weight.

Some of the medications that we take to control our pain have some interesting side effects. Sometimes a medication will make you ravenous and you cannot seem to get enough to eat. You find that you crave certain foods, like sweets, and you cannot seem to stop eating. Nothing that you do seems to help; you keep eating and eating and eating. Other times the medications take away your appetite. I find that I will cook dinner only to pick at it and then either save it for later or throw it away. I will eat breakfast at 6:00 am, usually 2 toaster streudel and a bowl of fruit, and then eat a small dinner at about 8:00pm.

Sometimes medications are not the issue at all. The issue is swelling or edema. Edema is defined as;

“Edema is the medical term for swelling. It is a general response of the

body to injury or inflammation. Edema can be isolated to a small area or

affect the entire body. Infections, pregnancy, medications and many

medical problems can cause edema. Edema results whenever small blood

vessels become "leaky" and release fluid into nearby tissues. The extra

fluid accumulates, causing the tissue to swell. Numerous medications can

cause edema, including:

· NSAIDs (naproxen, ibuprofen)

· Calcium channel blockers

· Corticosteroids (Prednisone,Methylprednisolone)

· Pramiprexole “

The loss of potassium in your body can also cause edema. Edema can be related to all sorts of medical conditions and there are a variety of types. Check with your doctor if you have any type of swelling that is accompanied by pain or that is not relieved using ice and elevation.

The traditional treatment for edema is to elevate your legs above your heart and diuretics. I was hospitalized twice because the potassium had disappeared from my body and I swelled to enormous proportions. One night in the hospital with iv potassium and I was back to my regular swollen self. The doctor tried putting me on diuretics to help me lose the fluid. I thought that diuretics were going to be my godsend because I thought that I would lose the water weight but no such luck. All I got were numerous trips to the bathroom.

So, now I have 3 sets of clothes; normal, puffy and fat, and three sizes of shoes: 7.5, 9 and 11 and my dreams of weighing 130 or less are in the dust. I just have to learn to live with my weight and the yo-yoing. It’s a hard thing to accept and I am not there yet but, I will keep trying to like my new body; regular, medium, or supersized.

But You Don’t Look Sick?!

2012-04-09T15:23:00.001-05:00

I hate those words and unfortunately, I hear them quite often. RSD/CRPS, and other chronic pain diseases like Fibromyalgia and Neuropathy, is called the invisible disease because there are few outward symptoms. Most people think that because we are not screaming in pain or if our face is not screwed up in agony that we are not in pain. Well, I have news for them! People who have chronic pain diseases learn how to mask the way that they are feeling. We develop a “poker” face that we allow few to see past. It is one of the ways that we have learned to cope.

When we smile or put on make-up or even dress up; people assume that everything is okay. People tend to make comments like,”You must be feeling good today”, and even the hated “You don’t look sick”. When we hear those comments we get angry and want to scream at them that “WE ARE SICK! I HURT! I AM IN PAIN, IT NEVER GOES AWAY!” There are times when we question whether we should bother at all with this type of coping method; that we should just show those people how we really feel. We question whether coping with the pain in this manner is a good idea and we wonder what would happen if we let these people see how we really feel.

Personally, I believe that it wouldn’t make a difference. When people make those comments to me I tell them that I am in pain; I am always in pain and that I have learned to mask the way I feel in order to make them more comfortable in dealing with me. I have learned that coping is better than floundering and as long as the people who count: my doctors, case manager and family, know that though I look good that I am still in intense pain then the rest of the planet can go hang!

Everyone wears a mask of some sort. Those of us in chronic pain have developed it into an art. We just ask that the next time that you see us and we happen to be smiling, laughing or even looking good that you watch what you say. Instead of saying “You must be feeling better” try “You look nice today”. Ask us what level our pain is; using the typical scale of 0-10. Tell us that you know we are hurting but seem to be coping well today. Realize that the mask we are wearing today is simply that; a mask and understand that pain is something that we have learned to live with.

A Letter to People Without Chronic Pain

2012-03-24T18:39:00.000-05:00

This letter was posted on a chronic pain Face Book page. There was no recognized author (Written by libit; 13 April 2009). It says everything that I want and need to say to those people who do not have chronic pain. I hope that those of you with chronic pain will use it to help you communicate with "normal" family and friends and that those of you who do not have chronic pain will gain a greater understanding of what I face on a daily basis.

To my friends and family who do not have chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its affects, and of those that think they know are actually misinformed. In the spirit of informing those who wish to understand; these are the things that I would like you to understand about me before you judge me.

Being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

There is a difference between "happy" and "healthy." When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, "Oh, you’re sounding better!" or "But, you look so healthy!" I am merely coping. I am sounding happy and trying to look "normal." If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

Chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying " You did it before" or "oh I know you can do this!" If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Getting out and doing things does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to "get my mind off of it" may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

Another statement that hurts is: "You just need to push yourself more, try harder." Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Chronic pain may also cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression. Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is a worldwide network (both on and off the Internet) of people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. I am working with my doctor and I am doing what I am supposed to do. I take the medicine that he prescribes and follow the routines that he wants me to follow.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be "normal." I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general. In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you. I appreciate your listening to what I have to say and I hope you have gained a little bit of understanding about me and my chronic pain. Thank you.

The Joy List

2012-03-24T08:21:00.000-05:00

When you have a chronic pain disease like crps; there are times when you get despondent over the changes the disease causes to your mind and body. There are the times when it is easy to curl up inside yourself and hide from the world. It is easy to block out your family, other loved ones, your responsibilities and your problems. Sometimes it is hard to bounce back from these episodes but I use a short cut to help me bounce back faster.... the joy list.

The joy list is a simple way of reminding yourself that there are things that make your life worth living despite the pain and suffering you are going through. Creating a joy list is easy. All you need is a small notebook and either a pen and pencil. You simply make a list of all the things that bring you joy.

Here is a sampling of my joy list:

Gerber daisy's
The smell of cut grass
The smell of bacon in the morning
The sound that rain makes against the house
Ozzie, my dog
Picnics in the park
Roses
Unexpected presents
Christmas morning
Helping others
Working in the garden
BBQ Potato Chips
Fresh fruit
Touring Historical Sites
Chicken Livers
Watching movies
Fires in Winter
The taste of a grilled steak
Fried Crab Claws
The Bright Star Restaurant
Davenports Pizza
The smell of a new car
Sun rises
Sun sets
A long hot bath
The Ballet
Watching Alabama Football
Going to garage sales
Shopping at thrift stores

I add to my joy list all the time; whenever I remember something or experience something that brings me joy. When I am feeling low I simply pull the list out and read it. It never fails to make me smile and remind me that life is good.

It can be hard; living with pain. It's easy to forget that life is good; that there are things out there that can make you smile and laugh. Using the joy list is a tool to help remind myself of those times when the pain blocks almost everything else out. Why not try it and see!

A Secondary Diagnosis

2012-03-17T20:15:00.003-05:00

People who develop CRPS are at risk of developing secondary condition and diseases. Unfortunately, this has happened to me. I have been diagnosed with secondary *LYMPHEDEMA* and *SJOGRENS SYNDROME* which are two conditions that most commonly develop in persons with full body crps in stages three/four. Tonight I will only be talking about lymphedema which I have in both legs and both arms.

Lymphedema (LE) is defined as

“… an accumulation of lymphatic fluid in the interstitial tissue that causes swelling, most often in the arm(s) and/or leg(s), and occasionally in other parts of the body. Lymphedema can develop when lymphatic vessels are missing or impaired (primary), or when lymph vessels are damaged or lymph nodes removed (secondary). When the impairment becomes so great that the lymphatic fluid exceeds the lymphatic transport capacity, an abnormal amount of protein-rich fluid collects in the tissues of the affected area. Left untreated, this stagnant, protein-rich fluid not only causes tissue channels to increase in size and number, but also reduces oxygen availability in the transport system, interferes with wound healing, and provides a culture medium for bacteria that can result in lymphangitis (infection).

Lymphedema should not be confused with edema resulting from venous insufficiency, which is not lymph-edema. However, untreated venous insufficiency can progress into a combined venous/lymphatic disorder which is treated in the same way as lymphedema.”

Lymphedema can develop in any part of the body. The signs and symptoms include:

· a full sensation in the limb(s)

· skin feeling tight

· decreased flexibility in the hand, wrist or ankle

· difficulty fitting into clothing in one specific area, or ring/wristwatch/bracelet tightness.

It is important that you seek immediate medical advice if you notice persistent swelling as early diagnosis and treatment improves both the prognosis and the condition. There are three stages to lymphedema:

· Stage 1 (spontaneously reversible):

Tissue is still at the "pitting" stage, which means that when pressed by fingertips, the area indents and holds the indentation. Usually, upon waking in the morning, the limb(s) or affected area is normal or almost normal size.

· Stage 2 (spontaneously irreversible):

The tissue now has a spongy consistency and is "non-pitting," meaning that when pressed by fingertips, the tissue bounces back without any indentation forming). Fibrosis found in Stage 2 lymphedema marks the beginning of the hardening of the limbs and increasing size.

· Stage 3 (lymphostatic elephantiasis):

At this stage the swelling is irreversible and usually the limb(s) is/are very large. The tissue is hard (fibrotic) and unresponsive; some patients consider undergoing reconstructive surgery called "debulking" at this stage.

When lymphedema remains untreated it may result in several severe consequences, including fibrosis, joint immobility, amputation and life-threatening infections that may require repeated hospitalizations for intensive intravenous antibiotic therapy. Failure to obtain proper treatment, including compression garments, devices and bandages, predisposes the patient to these serious consequences. protein-rich fluid continues to accumulate, leading to an increase of swelling and a hardening or fibrosis of the tissue. In this state, the swollen limb(s) becomes a perfect culture medium for bacteria and subsequent recurrent lymphangitis (infections). Moreover, untreated lymphedema can lead into a decrease or loss of functioning of the limb(s), skin breakdown, chronic infections and, sometimes, irreversible complications. In the most severe cases, untreated lymphedema can develop into a rare form of lymphatic cancer called Lymphangiosarcoma (most often in secondary lymphedema).

Depending on the severity of the lymphedema, the recommended treatment plan should be determined using an approach based on the Complex Decongestive Therapy (CDT) methods which consist of:

1. manual massage

2. bandaging

3. proper skin care & diet

4. compression garments (sleeves, stockings, devices such as Reid Sleeve, CircAid, Tribute, as well as other alternative approaches)

5. remedial exercises

6. self-manual lymphatic drainage & bandaging, if instruction is available

I currently attend The Lakeshore Outpatient Clinic twice a week where they perform manual massage and then the therapists put the affected limbs in a sleeve that pumps air around the limb forcing the fluid upwards towards the kidneys. I was being wrapped using eight different types of bandages from toe to knee; and was taught how to do it so the wraps could be removed for baths. Today I now wear the Tribute garments; which look like oven mitts and are custom made. This garment is quite expensive but I believe that it works much better than the bandages and the Tribute is easier to put on and take off. Prior to being sent to the Lakeshore Clinic, I experienced several onsets of lymphangitis/cellulitis, a severe infection resulting from my LE disease, requiring multiple hospitalizations.

Lymphedema is no small matter. It is a serious disease and requires a lifelong commitment to keep it under control. If you have CRPS and suffer from constant edema; please see your doctor and discuss with him the possibility that you may have acquired LE.

Revised © 2005 National Lymphedema Netwo=rk. Permission to print and duplicate this page in its entirety for educational purposes only, not for sale. All other rights reserved.

The information above is adapted from Lymphedema: An Information Booklet, a classic NLN publication now in its 8th edition. This 16 page booklet addresses the lymphatic system, causes of lymphedema, symptoms, lymphangitis (infection), lymphedema risk reduction, treatments, contraindications, diagnostic studies, special warnings and reimbursement issues

MEDICATIONS

2012-03-14T23:19:00.000-05:00

Most of us with CRPS take medications on a daily basis. There are some rare cases where I have heard and talked to CRPS patients that have refused to take medications but these people have had the disease in one isolated body part like a toe or finger. When I asked why they had stopped all their meds they told me that they felt that using medications at this time in their lives would diminish the results if the disease should spread at a later time. Most rely on meditation and relaxation techniques to hold the pain at bay. They have a valid point. Our bodies can develop tolerances to medications which can require dosage adjustments but; there comes a point when the dosage cannot be adjusted. At that point a different medication may be tried or invasive therapies like a drug infusion pump, neuro-stimulator and even electro-convulsive therapy may be recommended. Unfortunately, these may not be an answer either and so a patient can be left with no options at all.

There are a variety of medications out there for pain. Some of the medications that are prescribed for pain are off-brand medications; meaning that pain reduction is not the primary reason it is prescribed. Examples of this type of medication are: topamax, neurontin, cymbalta, paxil and mucinex. In most cases the generic is used rather than the name brand which can cause confusion unless you happen to know both names. Read the patient inserts that are provided by the pharmacy so that you are aware of the possible side effects as well as how the drug is supposed to work. It can be difficult to pinpoint side effects to one drug especially if you are taking several at one time.

Medications work differently from person to person and I am not a doctor; so I subscribe to the philosophy of not revealing to others what I take and not recommending a person try any drug. I have found that when patients talk about the medications they are on that it eventually turns into a semi-competitive discussion and that is something I do not think is good for anyone. It also pays to keep your mouth shut because you never know who might be listening.

Medications are valuable commodities. Most of us have to sign drug agreements that state medications will not be replaced if lost or stolen. In order to keep my meds safe; I keep them in a fire safe that is locked and hidden somewhere in my house. I also keep all my medications in the original containers especially when I travel. Keeping your meds in their original bottles provides proof that you have a valid prescription to anyone that should ask e.g. police, transportation authority. If you are travelling and are stopped by law enforcement, they can confiscate the meds unless they can be identified as legitimate.

The effectiveness of your medications can be altered by when and how you take them as well as what you eat. Meds should always be taken at the same time each day with water. Drinking milk or juice can decompose certain medications rendering them less effective or useless. 8 ounces of fluid is required to dissolve tablets; less than that can leave remnants of the drug on the stomach lining causing problems down the road. Alcohol should never be used to wash pills down because it can accelerate side effects.

Most meds can be taken on an empty stomach. The general rule of thumb is that if your meds require an empty stomach then they should be taken one hour prior to a meal or two hours after. Meds that should be taken with food should be taken immediately before or after a meal. There are certain foods that can interfere with your med’s effectiveness. A great example is the consumption of tomatoes and grapefruit. The acid in these foods can cause your medications to decompose; stripping the body’s ability to extract nutrients from the food.

People who have chronic pain, use alcohol, smoke and take antacids, laxatives, pain relievers, tranquilizers and blood thinners need to be especially careful as your calcium, potassium, vitamins B and K levels can be negatively affected. Check with your doctor about having regular labs drawn to see if supplements are needed. You should know your medications and how they make you feel. If a drug is not working for you then why take it?

Medications are a serious matter. Doctors are held accountable by the DEA for each prescription that they write. The DEA requires regular drug testing of patients on narcotics and other class II drugs to ensure that you are not abusing the privilege. Trust that your doctor is writing what he thinks is best for you. Remember that your doctor and pharmacist are your guides and partners. Do not hesitate to ask if you have any questions and do not stop, start or alter how your prescription is written; your health and well-being depends on it.

Support

2012-03-13T17:03:00.000-05:00

When you live with a disease like rsd/crps support can become a major issue. You can talk until you are blue in the face and unless that person has a chronic pain disease they will never truly understand what you are going through. Many people will say that they have had pain but generally the pain that they have experienced is acute pain; an altogether different kind of pain than chronic.

A person’s support system usually comprises of a spouse, immediate family, therapists, doctors, nurses, friends; people who know what your hopes and dreams are, know how you live and take care of yourself, know what is going on with your health, know your quirks and the problems you face. Someone with a chronic illness normally finds that as the years go by their support system dwindles to a few which means that those few shoulder more and more of your support needs until they become overwhelmed and either leave or distance themselves from you. When you are in pain all the time your circle naturally diminishes so you tend to lean more and more on those who are or should be the closest to you. Unfortunately, rsd/crps has a higher than average divorce rate as well as family estrangement so how do you get the support you need?

The first, and I suppose the most obvious, is Facebook. There are a variety of pages devoted to t people with rsd/crps. I personally recommend the following:

I Have A Chronic Pain Disease and Have to Live With it!

Dr Patty's Chronic-Intractable Pain & You. A Chronic Pain Advocacy Group

Pain Sufferers Speak's Support Family

US PAIN FOUNDATION

RSD aka Really Sucks Dystrophy

I also recommend the following websites:

http://www.chronicintractablepainandyou.org

(this site has sub groups rsd crps, lupus, ms, ci, fibro, lymphedema and a men’s only group. You can video chat with anyone on the site. It is completely private so feel free to ask any question, talk to someone else with your pain disease or just rant)

http://rsdsa.org/index2.html

(this is the organizations clinical site; includes clinical guidelines, ongoing research etc…)

http://www.rsdhope.org/

(one of the original web sites, has excellent information on treatments, meds, additional resources etc…)

And there is my personal favorite:

http://leslie-livingwithrsdcrps.blogspot.com

There really is no substitute to talking to someone who has this disease. Experiences differ but, we all share a deep and common bond; pain. Reach out… Talk to someone who has been there…

YOU ARE NOT ALONE!

Hope

2012-03-12T22:27:00.000-05:00

Hope: (vb) 1. to desire with expectation of fulfillment 2. too long for with expectation of obtainment 3. To expect with desire: trust

(n) 1. Trust, Reliance 2. (a) A desire accompanied by expectation of or belief in fulfillment (b)someone or something on which hopes are centered (c) something to hope for

Hope plays a big part in the life of a rsd/crps patient: we hope that the doctors who treat us know about rsd/crps, we hope that a treatment will lower the pain, we hope that there will be a new treatment that will work, we hope that there is someone out there who knows what we are feeling and with whom we can talk to, we hope for warm sunny days, we hope to return to work… we hope for a cure.

There is nothing wrong with hope. It is what keeps most of us going from day to day. It is the reason we donate our time and money to certain causes. Hope gives us the courage to go through painful procedures in order to control or eliminate the pain. But, there can be a downside to hope too. Hope can lead us down the garden path to faith healers, to herb and vitamin mixtures and quack treatments that no doctor in their right mind would encourage you to try. False hope can lead us to ignore medical advice and wander into the realm of the ridiculous. It can also cause us to volunteer for clinical trials or procedures which may not always be what is best for us at the present time e.g., the ketamine coma is one that specifically springs to mind. It can keep us from facing cold, hard facts and prevent us from tying up personal ends: executing a durable power of attorney, creating a will, completing advanced directives etc… In short, hope can cause us to not accept our situations until we are enveloped in a fog of denial.

Hope can make us think that we can do more than we can. A great example is what I did last week. I had something scheduled every day; doctor’s visits, therapy appointments, a trip to Montgomery to participate in a rally to support a bill that is in the Alabama House, a dinner out with family and shopping. I pushed myself so hard that I crashed on Friday afternoon and spent the next three days in bed. I set myself up for failure because I hoped that I could act like a normal person and did not concede that I needed to rest because of the crps/rsd. Nothing can make you feel worse than having to cancel out on an engagement that you have been looking forward to because you pushed yourself too hard.

Hope is a good thing but it is important that we be realistic about where and with whom we place our hopes. False hopes are a trap which once snapped is hard to escape from. We have to learn to set manageable goals and ensure that we are not overdoing it. Here are a couple of hints that I use to keep myself grounded:

Discuss and create a treatment plan with your doctor and review it with him/her periodically.

Be realistic about what stage research is in and how it may be applicable to you.

Do not overextend yourself.

Set small personal goals that are enjoyable and that you can achieve.

Review your life/career goals and rework to extend the timeline.

Do not give up on your big dreams; acknowledge that they are dreams and work to make them manageable.

Hopes and dreams are an important part of living and something we all should have. Life would be boring if we didn’t have them. Those of us with rsd/crps just have to work a little harder and smarter to achieve them.

Betrayal

2012-03-11T00:06:00.000-06:00

Eventually everyone who has rsd/crps feels that they have been betrayed by their body. You feel it has a mind of its own and is on a path that is contrary to whatever plans you might have had or have. I have felt betrayed by my body several times; the first time when I realized that I could no longer make my hand do what I wanted to do without severe pain and the second time when I realized that I could no longer work because of the pain or the side effects caused by the medications.

I felt betrayed was when I noticed that my fingernails were no longer growing like they once had and were thinning out, splitting and tearing and finally growing over the ends of my fingers. I lost the hair on my right arm which wasn’t so bad except that the left arm was still quite hairy; I looked lopsided and there were quite a few people who made mention of it. I felt betrayed when my hands went numb and I would drop the things I was holding; something that still goes on to this day and which has become an expensive proposition as I have gone through six sets of glasses and five sets of dishes as of this writing.

I felt betrayed when I found that I could no longer sit on a chair because crps had moved to the site of where the surgeon had placed the neuro-stimulator generator. I felt betrayed when I could no longer make myself walk up the stairs and eventually walk at all without an assistive aid. I felt betrayed because one week I was wearing a size 14 petite and the next week I was wearing a size 22. I felt betrayed when I realized that I was falling down more than I was walking and needed a wheelchair to get around.

Eventually, you feel betrayed by your entire body because as the disease progresses it seems to eat away at the person you once were and leave you with a body that you barely recognize as your own. Rashes, swelling, hair loss, memory fog, hormonal changes, heart, bowel, bladder, stomach, mouth, eyes; all affected in some way or another either by the disease or the medications that are prescribed for the disease. You learn to hate they way you look and the way you feel and you learn not to trust your body from one moment to the next; the way it acts, feels or looks.

It is normal to feel like this; everyone with any type of disease that can alter your body does at one time or another. However, it is the way that you reconcile yourself with these feelings that are important. Try to pamper your body a bit: manicures, pedicures, bubble baths, a change in hairstyle, a new exercise regime; whatever makes you feel good about yourself and your body. The key is to remind yourself what still works, looks normal and be grateful. There can be pain; more likely than not, so take it slow to start off and always check with your doctor before trying anything strenuous or that can alter your chemical make-up.

To quote a cliche, “Life is short”; recognizing what makes you feel better about yourself and doing it can go a long way to making life with rsd/crps bearable.

Creative Juices

2012-02-28T07:45:00.000-06:00

I love to create things; whether it is crocheting a blanket or writing this blog there is something to be said for making something out of nothing. One of my favorite things to do when I was in high school and college was to write poetry but somehow I got out of the habit. I suppose it was because I was concentrating on creating sets for the local theatre department as well as concentrating on my work and the daily work of keeping a marriage fresh and viable.

I love poetry. Poetry has always been a large part of me and one of my favorite things to do is to sit down and read some of my favorite authors: Keats, Wordsworth, Shakespeare, Browning, Dickinson, Plath and Whitman. There are poems that remind me of what love is, poems that remind me of spring and new growth as well as poems that e
xplore the darker side of humanity.

Recently, a friend took me to an event hosted by the Birmingham Jefferson County Libraries called Bards and Brew. This event takes place on the first Friday of every month and is hosted by a different library in the system. Basically Bards and Brew is a beer tasting and poetry reading. The event begins at 6:30 pm, although the curtain goes up around 7 pm. It is an open mike and people stand up and read original works although there are some that throw in a poem by a favorite author. The night I went we tasted two different ales by a brewery in Mississippi and the friend that invited me had written a poem that he asked me to read for him because he accidentally left his reading glasses behind. It was a beautiful poem and so, with his encouragement, I decided to try to put something on paper.

I remember my creative writing teacher in high school told me to write from my life experience and so my first poem; which will be read March 2, is one that attempts to describe my pain. So, here is the premier of my first poem. I hope you like it.

It’s Always There

It’s always there

No matter what I do or where I go, it’s always there.

It courses thru my body like a flood swollen river,

It ebbs and flows.

Dull, throbbing and constant like a beating heart,

Skin beet red and sensitive to touch;

Exploding like a tomato thrown against a wall.

Burning flesh and beds of nails.

Lightning in a bottle.

There is no escape, no running or hiding;

A blatant thief secreting career, love, faith and finally life.

Its hunger never satisfied,

And it’s always there.

Silence is the Burden

2012-02-25T00:10:00.002-06:00

CRPS is called an "invisible disease" because the signs and symptoms are often just a pain that lasts longer than the initial injury and is more intense and continuous. It makes for a unique situation that places a burden of proof on the patient and often doctors or others who have not heard about CRPS tell the patient that what they are feeling is entirely in their head. Some people with CRPS are denied help and care because of the ignorance of these people and it places them in a lonely, isolated place where suicide seems like the only escape from the constant pain. In fact, RSD/CRPS has the highest suicide rate of any known disease.

In the beginning of my pain journey I met my share of doctors who did not believe that I was in pain. I had one doctor that forbid me to visit the ER because he said that I would be wasting the time of the doctors and nurses and taking away valuable time that might be needed by a “real” patient. I met one doctor who said that I could not possibly be in pain because I smiled and laughed at the therapists. People with crps become good at masking the way we feel. We try to put a brave face on things and not show how we really feel. I don’t know that if I had not masked the way I felt by plastering a smile on my face that the doctor would have taken me seriously or not.

There are an infinite number of doctors who have no idea what rsd/crps is at all. It amazes me that a disease that has been around since before the civil war; I think that the first case was actually documented sometime in the 17^th century, is virtually unknown. Each time I have been in the hospital I have encountered nurses who have no idea what I am talking about. I try to keep a wallet card with me that explains what rsd/crps is and the best way to help me. I have found that this helps somewhat although I have to tell each shift that a copy of the card is in my chart. (Copies of this card may be purchased from RSDSA at www.rsdsa.org)

I believe that one of the reasons that those of us with rsd/crps are treated like we are crazy is because of the lack of education placed upon chronic pain disease by medical schools. I was told by a friend who is a medical student that approximately 17 hours of their class time is devoted to pain and frankly, that is not enough. Nurses receive even less education on pain. Until pain is addressed properly and extensively by those teaching our future doctors and nurses then we will continue to hear that they have never heard of our disease or the infamous “it is all in your head.”

The second reason is awareness. I believe it is every person’s obligation to educate those around him/her about our disease. The time for being complacent is over. We each have a responsibility to each other to promote the cause, symptoms and treatments that rsd/crps or any chronic pain disease requires. I try to take every opportunity to talk about rsd/crps whether it is to the EMT’s who respond when I need to go to the ER or the nurses who treat me in the hospital. I have talked to Sunday school classes, church congregations, school assemblies and even this blog is an attempt to raise awareness about what living with rsd/crps is like.

The last reason is research. Chronic pain diseases receive very little research funding compared to Heart Disease, Cancer and Diabetes. RSDSA and smaller support organizations attempt to raise funds for research by holding tag sales, walk/roll-a-thons, bake sales, auctions and merchandise sales; a drop in the bucket. I know it is hard to contribute money when you are living on disability or workman’s comp but, we can promote fundraising through the organizations that we belong to and the people we know. We can ask that monies used to buy Christmas or birthday presents be donated towards research and we can ask that memorial funds be set up at local funereal homes. We are restricted only by our lack of imagination.

There is hope that this climate towards the chronic pain patient is changing. The US Senate Full Committee on Health Education Labor & Pensions is currently holding hearings on “Pain in America: Exploring Challenges to Relief”;

http://www.help.senate.gov/hearings/hearing/?id=5906d585-5056-9502-5dd1-1d549d0d88f7&utm_source=Feb.22&utm_campaign=Feb22&utm_medium=email .

This committee is exploring the barriers to treatment and research that currently exist for chronic pain in the United States.

The latest statistic; provided by this Senate Committee, state that there are over 116 million adults in the United States that suffer from some type of chronic pain disease; more than Heart Disease, Diabetes and Cancer combined. I hope and pray that this committee can lead the way to changing the way that chronic pain patients are treated and the dollars that are spent on research. We all need to become more aware of what is happening and help those who already fighting to end the burden of silence that we all bear.

The Whole Tooth

2012-02-23T22:17:00.000-06:00

CRPS and dental problems go hand in hand. The medications we take can cause the salivary glands to quit working and the patient can end up with intense dry mouth which can cause the bacteria in the mouth to stay on the teeth longer than usual causing the teeth to literally rot in your mouth. I started having dry mouth in 1999 because of the opoid medication that I was taking because of my injury. When I was moved from the Orthopedist to a Pain Management specialist and he started adding more drugs; the dry mouth became more intense.

I started carrying a drink with me wherever I went and I always had a piece of gum or a mint or a piece of hard candy in my mouth to stimulate the saliva but the lack of saliva and the mints and drinks all caused my teeth to deteriorate faster than normal. I also have to admit that I have a life-long fear of dentists that goes back to when I was six years old and the dentist hit a nerve when drilling out a cavity so I only went to the dentist when I absolutely had to. In 2005 I started having major pain whenever I ate and when I went to the dentist my sensitivity was so high that he couldn’t accomplish even a regular cleaning. He suggested that I find a sedation dentist because of the sensitivity.

I will tell you that it is not as easy as it sounds. I finally found a doctor that I liked and who would take me on and we scheduled the first real appointment to see what needed to be done.

He ordered Valium for me to take an hour before the appointment and when I sat in the chair they put me on nitrous; something I highly recommend. The news I received was horrible. I needed to have two teeth pulled because they had deteriorated so far that the dentist could not save them. I also needed 22 root canals. The dentist explained that I had two options; the first was to go through the prolonged dental work and have the teeth fixed whether it be a root canal, crown or implant. The teeth would be fixed in small sessions to limit the amount of pain I would have after the procedures as well as prevent any additional problems with rsd/crps. I also have a small mouth so fitting instruments and fingers in my mouth made it so crowded that it actually added time to what a healthy person would normally use. The second option was to admit me to a hospital and pull all my teeth in preparation for dentures. The dentist explained that the rsd/crps had eroded the bone of my jaw and so he was doubtful that I would be able to have a pair made that would be a good fit. He explained that pulling the teeth or a pair of ill-fitting dentures could cause an infection that could possibly lead to me having a feeding tube for the rest of my life. After reflection, discussions with my pain doctor and case manager, and two second opinions; I chose to sit in the chair and fight for my teeth.

It wasn’t easy and it took longer than he thought it would but after almost a year my teeth were saved. In order to maintain my teeth he recommended that I see him every three months instead of the usual six. I went through periods where my teeth felt and looked fine and then I would go through periods where the titanium posts some of the teeth were mounted on would break and have to be fixed. I also ended up having two more teeth pulled because they had become thin and brittle after being whittled down by the dentist. I also ended up having several crowns replaced and another root canal. In 2011, the dentist decided to send me to a periodontist in order to have a deep cleaning and ward off gingivitis. The two of them decided that it would be necessary for me to be seen every three months, alternating between the two dentists.

I am happy to report that my teeth and gums are now healthier than they have ever been. I use a prescription toothpaste and mouthwash to assist with sensitivity and dry mouth. I can also say that even though I am nervous before a dental appointment that I am no longer scared of the dentist. I still use the Valium and nitrous but; the appointments are shorter because I am not flinching at his approach.

The important thing to remember is that no matter how bad it is you have got to fight for your teeth and keep them as long as you can. Dental experiences vary from person to person and this is only my story but, I hope that my experiences will encourage those with rsd/crps to ask their dentist about seeing them more often. Dry mouth and meds go hand in hand so keep an eye on your smile!

Thoughts on Thanksgiving 2011

2012-02-22T00:57:00.000-06:00

(Originally Posted By Leslie Coggin in Living with RSD/CRPS at 11/28/2011 12:42:00 AM)

I thought that I would share some general thoughts at the end of this 2011 Thanksgiving week-end. I am sitting in my living room looking at the lights on the Christmas tree that I just put up and thinking about the past year and how fast it has gone. There have been good moments and bad, pain, agony, laughter and the feeling of being at peace.

I wanted to share with you the things that I am grateful for this year. I am grateful that both my parents are alive and in good health. I am grateful that I have a home and that my baby, Ozzie Newsome (rat terrier extraordinaire!) is there and happy to see me each time I walk into the house. I am grateful for all my families, including the extended ones from my parent’s remarriages. I am grateful for new friends and a closer relationship with old ones. I am thankful that I have reconnected with some of my friends from high school.

I am thankful that I have doctors who understand my rsd/crps and me and who listen to me when I talk. I am thankful for my case manager who is also a dear friend. I know that my life would be much harder without her support, encouragement and prayers. I am thankful for the people in my church and my pastor. No matter how long it is between visits, they always keep me in prayer and welcome me with open arms when I walk into the sanctuary.

I am grateful that I can still live alone with a little assistance. I am grateful for my rsd/crps family and those people who are willing to work with me to get the ALABAMA PAIN COALITION up and running. I am grateful that my health seems to be holding steady and that I lost some weight this year.

2011 has been a year where I lost someone close to me (I love you Aunt Mag) and climbed over many internal hurdles. All in all though, it has been a good year; a productive year.

HAPPY THANKSGIVING!!!

Edema

2012-02-22T00:42:00.002-06:00

It has been a rough couple of days. The pain has stayed at about an 8/9 and my feet look like pillows with stubs for toes. Edema seems to be one of the curses of CRPS and there are days when I long to be able to wear the shoes I used to. I went from beautiful high heels, cowboy boots and wonderful skinny flats. Now, I wear crocs, tennis shoes 3 sizes too big and men’s bedroom shoes. What a blow to someone who loves shoes!

I tend to swell in both arms and my ankles and feet. My primary care doctor says that the edema in my feet has developed into lymphedema. Stedman’s Medical Dictionary’ describes lymphedema as “swelling (especially in subcutaneous tissues) as a result of obstruction of lymphatic vessels or lymph nodes and the accumulation of large amounts of lymph in the affected region”. Another name for it is elephantiasis (now THAT word deals a blow to the ego!). The treatment is to wrap the affected areas in heavy bandages so as to disburse the fluid into the rest of the body. This treatment is accompanied by massage and an hour with the affected area inside an air pump that forces the fluid upwards to the kidneys where it can be disbursed. I am afraid that the massage and air pump will up my pain levels to where I cannot stand it but; if it gets the swelling down so that I can wear some of my shoes, even for one night, then it’s worth it… pain be damned!

When you have edema you end up retaining fluid and that means I really do not know what I weigh. It also gets frustrating because I diet and diet and try to exercise but the fluid never seems to go away. I am on diuretics but they just do not seem to help. At one point this year the fluid went down and I discovered that I had dropped about 100 pounds then the next week came and I was up about 40 pounds. I have three sizes of clothes; one skinny, one for when I am retaining fluid and one for when I am fat and retaining fluid. Sometimes I dream about being thin, a size 8 or 6. But, the women in my family have always been cursed with ‘weight issues’ and now with CRPS I know that will never happen. Weight issues relate directly to self-esteem issues. I try not to let the weight bother me but it does. It really does. It is hard to eat healthy because the costs of fresh fruits and vegetables are sky high. The pain and the edema make it difficult to exercise and I am sensitive to cold so unless the pool is at a high temperature, almost like a hot bath, then I have problems staying in the pool for any length and end up paying for it. I know this sounds like a bunch of excuses or rationalizations but someone once said that they didn’t know of anyone who could get through a day without one juicy rationalization. Those are mine.

I believe that the edema related to CRPS is one of the cruelest parts of having this disease. It knocks on all the doors; weight issues, self-esteem, financial, pain etc …. Sometimes there is no way to fight it; you have to accept it and move on but.. oh how I miss my shoes!

Regret

2012-02-22T00:27:00.002-06:00

(Originally Posted By LeslieCoggin in Living with RSD/CRPS at 8/16/2011 10:13:00 PM)

Regret is never a good thing. People say that we have to learn from our mistakes in order not to repeat them… but it’s not the same thing as regret. I know that regret is counterproductive and is not good for me as I try to deal with my life as it is but sometimes there is a moment, usually caused by a sound, smell or well... too much time on your hands. This past week, since I have been confined to bed, those stray thoughts have gone from a trickle to a flood. Normally, I would try to shrug them off but, tonight those thoughts have been hard to get rid of. In fact, to tell the truth, those thoughts have been hard to get rid of for the past week or two.

I think about what my hopes were for my old life; a husband, a family of my own, holidays spent with family and friends, a stellar career, a home of my own etc . . . and I look at what I actually have: not one but two ex-husbands, no children except for a 6 year old rat terrier, no career, always feeling like a fifth wheel.. Part of my pain management program entails learning how to let go of your past; basically grieve over the losses caused by your disease and then moving on. I haven't done that. I haven't given up on finding someone who loves me and who I love. I haven't given up on having my own family (and by that I mean there is always a chance that the someone I love could have children and I would have the opportunity to share in their lives as a stepmother or getting really realistic a grandmother to his children's children).

Career?? Every time I see something happen that I would have responded to as a Crosser… it hurts. A great example is what happened when the stage collapsed at the Indianapolis State Fair. I wanted to be there so badly. I knew exactly what steps were taking place and where. It made it a little worse because in my tenure with the Red Cross in Indianapolis I actually worked the State Fair, had walked the area where that particular stage was and knew who was probably assigned to that particular area. I keep searching the TV and internet on anything having to do with the disaster so that I could possibly glimpse any of the people I worked with. I want to be there, helping...doing what I used to do and frankly what I felt was my calling. The Red Cross was not just a job to me; it was my career and I was successful at it. I miss that.

I tend to relive that moment in time (4:15 pm November 12, 1999) when my life changed. I struggle to keep it all in perspective but those times, the dark times, when regret is all I see around me it’s hard to function. It’s hard to do anything but sink deeper and deeper into feelings of failure, despair and depression. The one thing I do know is that my life changed forever on that day and there is nothing I can do about that but keep on trying to forge a new life... one where I have CRPS and pain and, hopefully one day soon, acceptance.

What's in a Name

2012-02-22T00:11:00.002-06:00

(Originally Posted By Leslie Coggin to Living with RSD/CRPS at 7/25/2011 03:14:00 AM)

What's in a name? Well... a name is a definition of who and what we are.
When I say that my name is Leslie and I have CRPS I am telling you very
explicit facts about myself. However a name came be ambiguous. A good
example of this is the name of the chronic pain disease CRPS - Chronic
Regional Pain Syndrome. This is the accurate name of the disease and should
be the one we all go by. Instead, people say RSD, neuropathic pain disease,
causalgia, neuralgia, or combine RSD with CRPS calling the disease RSD/CRPS.

Well.. it is time to clear the air because until we all use the same name we
will continue to fight an uphill battle for recognition and support. I
asked Jim Broatch of the Reflex Sympathetic Dystrophy Association what the
accurate name of the disease is. He stated to me that CRPS is the accurate
name and that RSD applies to type I of the disease. RSD is when the nerve injury cannot be immediately identified. CRPS type II is labeled causalgia and is defined as cases in which a distinct "major" nerve injury has occurred. The preferred terminology is "CRPS formerly known as RSD." Literature from the RSDSA talking about the pain disease; has this terminology on the front. So why don't we use the same name?

Personally, I think we use different names for the disease because the docs
who diagnose us use different names. We all need to get on the same page
because the use of different names causes confusion, impedes communication
and can ultimately inhibit awareness, support and fundraising activities.
We have no nope in changing this until every single one of us calls the
beast by its true name….. CRPS. I plan to make an effort... will you?

When IS the Pain Worth it

2012-02-21T01:14:00.001-06:00

(Originally Posted By Leslie Coggin in Living with RSD/CRPS at 12/21/2011 04:11:00 AM)

When you live with a chronic pain disease you begin to understand what causes your pain to increase and what techniques you can use to decrease that pain. I have had the monster (rsd/crps) for 12 long years and some of my triggers are the changes in the weather, dampness, standing for any length of time, walking distances, bending, stress, anxiety and overdoing it. The question that I faced recently is; is there a time when doing an activity is worth the pain that you feel after. I have answered this for myself and that answer is a resounding "YES"!!!

In order to explain my answer I want to share with you what I did the evening of December 17th, the night of my high school alumni Christmas Party. I decided to make a concerted effort to attend and so I called an old high school friend, went out and bought a new dress and spent a couple of hours getting ready. I made the conscious decision not to wear the bandages and to forgo wheelchair and walker for a cane and drove off into the night determined to have fun.

I have to admit that it has been a long time since I dressed up and went out in the evening. Evenings are hard to manage because it is hard to come by transportation; all the services quit running at 5:30pm and rarely comes to my side of Birmingham and, the pain seems to be more intense in the evenings. I rarely ventured out and after several years of playing it easy and safe, bending and compromising my desires and letting pain have it's way, something in me wanted to go to this party more than anything else in the world.
I mingled, laughed, saw old friends and made new. I talked politics, the transit system, religion and old times. I tasted the delicious finger foods and explored the art gallery. I talked sports and homecoming and the hopes for a championship in our division next year. I even had a little bit of wine (and confessed to the doc on Monday that I did) and flirted my head off with several men. It was a reckless feeling and I was almost giddy with the excitement of it all.

The next day the pain was searing. The pain began to climb about halfway through the party and eventually ended up at a 10. The burning pain drove me to tears and I stayed in bed the next day with my feet up, the curtains drawn and a wet wash cloth around my neck. I reached a startling conclusion sitting in the dark; I found that I was reliving the party in my mind and as I did the pain receded just a bit. I discovered that I had dropped a vital part of life by choosing to avoid the things I used to enjoy because I was afraid of the pain.

I suppose that what I am saying is; don't let the pain suck you into a world where you become isolated and joyless. Find the things that you love to do and do them. Don't be scared that it will hurt and don't let it rob you of the fun and joy of life. Make a committed decision to live your life to the fullest and you will find that the pleasure and joys are worth the cost of the pain.

The Hospital

2012-02-21T01:07:00.000-06:00

(Originally Posted By Leslie Coggin in Living with RSD/CRPS at 8/19/2011 11:13:00 PM)

I was admitted to the hospital yesterday (8/19/2011) for cellulitis of both lower legs and feet. The skin was so tight, shiny and red and the legs were swollen to at least twice their normal size... maybe three times; they were huge! My legs kept falling asleep every so often and then I would fall. I think that after the fourth fall, when my forehead was so numb that I couldn’t feel a brush go through it. I had gone to see my Internist every week for the last month and he had given me several different antibiotics to try to combat the virus but it just wasn’t working. The internist then decided to admit me for a course of IV antibiotics; positive that would do the trick.

From the moment a doctor decides to admit you; you lose complete control. You are in the hands of the hospital "machine". First, you have to contact the family to let them know what is going on; then comes the phone calls to the pastor and neighbor so that Oz, the great and wonderful rat terrier, is taken care of. Then it is hurry up and wait, and wait and wait and wait some more. You have to wait for a room to be clean and ready. you wait for the doctor to call in orders and then you wait for transport to the room.

The trend that I dislike the most is the hospitalist. The hospitalist is a doctor that specializes in the management of a hospital stay. The doctor does not know you or anything that is going on with you except the one diagnosis that sent you there in the first place. When you have CRPS though, I think its a little short sighted and maybe a little dangerous because so many systems can be involved. The hospitalist I had had heard about CRPS and thought that it had something to do with the nervous system and was "sort of neuropathic in nature" but was not sure that it really had anything to do with anything. I really miss the time when your Internist knew your health issues inside and out and followed you from cradle to the grave including all the little hospital stays along the way. I think that the patient loses out when a hospitalist is brought in.

The hospital stay was punctuated by visits from a nutritionist. the dietician, the dietician tech, blood work, a trip to Doppler, visits from an IV team, admitting team, breathing team, cardiac team, med team... teams for this and teams for that. In fact, up until the doctor decided to discharge me I was seeing some type of team. The last thing that I did was to see the discharge team.

I suppose that the whole purpose of this blog is that once the doc says that those magic words that admit you to a bed in the hospital; you hurry up and wait to see some type of team. You sit and wait for the next team to show up. You wait for diagnosis, you wait for treatment, you wait for meds and he bathroom and to eat… you wait.

Thank God I am discharged and home!

The Practice of Medicine

2012-02-21T00:57:00.002-06:00

(Originally Posted By Leslie Coggin in Living with RSD/CRPS at 2/03/2012 12:54:00 AM)

I recently received an email from a woman with CRPS who was angry at her doctor for not telling her that an epidural block did not always work and that sometimes it can cause more pain. She was furious because she believed that her doctor said that this treatment would eliminate all her pain. I also got an email from a pain patient who said that her doctor told her that a series of ketamine injections would "cure" her of CRPS and was furious with him because it did not. I have read so many comments from people who believe that the doctor is an all-knowing god with supernatural powers and are disappointed or mad when they discover that the doctor did not have all the answers or when a treatment did not have the results that they expected it to have. PALEZZZZE...

Doctors are human beings and there is a limit to their knowledge. They have more education than the average person and have invested years in training and practicing in their specialty but they are not gods. There is an old saw that says that a doctor is not a "superman" because they "practice" medicine. I believe that is the spirit of how we should view our doctors. Doctors can give you an educated guess but there is no way that they can tell what will work for you or how you will react to a treatment or even how your disease will progress. If a doctor talks cure or tells you how you will react in a certain way with absolute certainty then you have the wrong doctor. You know your body and should be able to educate your doctor in some aspects of your disease; after all you are the one that has to live with it day in and day out. A pain patient should know everything there is to know about their disease: what are the symptoms, what are the current treatments, what is the current research, what is the disease progression, how do the medications work, what is your doctor's reputation and how do other patients feel about him. No one can be a better advocate for you than you.

I am fortunate to have doctors that I trust and who will listen to me when I ask questions or suggest a change in my treatment plan. I am always asking them about new treatments that I have read about. I can talk to my doctors about how certain medications are affecting me and whether a medicine needs to be discontinued or have the dosage increased/decreased. I believe that I have a good relationship with my doctors and that they respect the fact that I know as much as I do about my disease. I respect their opinions but realize that there is no guarantee that a certain treatment or medication will work for me the same way that it works for a fellow pain patient. There is always an element of doubt or surprise in how my body will react.

I feel that my doctors and me are a team; working together to find a way for me to live with the pain. I accept the fact that what I am hearing from my doctor's are their best guesses. I ask questions and then I go home and do my own research; including talking to other patients who have experienced the same treatment. I don't ask about medications because I know my body and my disease is unique and what works for you might not work for me.

There are no certainties in life. There is no harm in asking questions so make sure that you do. Make yourself a part of your medical team by learning about your disease. If your doctor objects to you having any input in the conversation then switch doctors. No one should feel intimidated by their medical team or blindly follow their suggestions. Be your own advocate because no one else can do it for you.

How to Choose a Physical Therapist

2012-02-21T00:44:00.001-06:00

(Originally Posted By Leslie Coggin in Living with RSD/CRPS at 2/04/2012 01:30:00 AM)

Physical Therapy is a vital treatment for RSDCRPS. It can help with range of motion, assist in keeping the disease at bay and sometimes decrease pain levels. It should be a mandatory, ongoing part of every person's treatment plan and can include stretching, aqua therapy, walking and strengthening exercises.

Most doctors and research are in agreement that diagnosing a patient with CRPS and getting them into some kind of physical therapy can cause a patient to go into remission and halt the possible spread of the disease to other body parts. Physical therapy should begin within the first 6 weeks of contracting the disease. Therapy WILL hurt at first but you must find the fortitude to continue. Some patients experience rebound pain a day or two after a pt session but when it comes right down to it; you have to grit your teeth and continue on. I have spoken to several patients who have gone into remissions that have lasted for ten plus years because of this regime. However, if you are not diagnosed correctly then pt can assist in keeping your range of motion up and strengthening your body so that you do not lose what you have or end up in a wheelchair or walker prematurely.

Finding the right physical therapist is vital because in the hands of the wrong one the disease can accelerate. When deciding upon a therapist you should not be afraid to ask questions. The first question I would ask is if they know what RSDCRPS is. Make sure that you speak as clearly as possible; this is no time to play games. Some therapists may not know the actual name but know the disease. Sometimes you may not have a choice on which therapist you use because it is dictated by workman's comp or there may not be a choice in your area. If this is the case then contact RSDSA (The Reflex Sympathetic Dystrophy Association - www.rsdsa.org). They have recently released a video specifically for physical therapists. You can also contact American RSD Hope (www.rsdhope.org) for additional videos and brochures aimed at the physical therapist.

The second question that you should ask is how many patients with RSDCRPS have you treated. Ideally the therapist should have treated between five and ten CRPS patients. Some therapists may say that they have not treated anyone with CRPS but have treated those in chronic pain. This is not the same thing as chronic pain patients generally do not have an aversion to ice or have allodynia which is a sensitivity to touch. I know that there are times when even the sheets on my bed or the clothes on my back hurt much less having someone actually touch the affected body part.

Remember the adage "No pain no gain" does not hold true for CRPS. We need to be thinking long term and not look for a fast fix. Acute pain and Chronic pain is not the same so what works for an acute patient will not work for a chronic. Be smart and approach this as if you are making a life and death decision because in the end the therapist we chose and the program we enter can make a world of difference.

The next question that you should ask a potential therapist is if they have an aqua therapy pool. Aqua therapy can assist in easing the allodynia as well as create a buoyancy that allows you to do more and exercise longer. There are patients that can not stomach land therapy but find that in the water they can exercise muscles and areas that have long been dormant. Make sure that you ask if the pool they use is a therapy pool and not a standard pool. A therapy pool is one where the water temperature exceeds 83 degrees and is often somewhere around 92 degrees. Most CRPS patients can not handle the cold of a regular pool. Another question to ask is if the pool is a lap pool or a regular pool. A lap pool is usually quite shallow so no floatation device is necessary. Exercising in a lap pool allows the patient to include a cardio section in their therapy that might be hard to accomplish on land or in a regular pool. Once again RSDSA has created an aqua therapy instructional video for physical therapists. The Arthritis Foundation also has information on aqua therapy that can be altered for a CRPS patient.

The last question to ask a potential therapist is whether the therapist plans to tailor a program to meet your specific needs or whether you will be placed in their regular program. CRPS patients tend to do better when their specific weaknesses are addressed which can be quite different from what the therapist is used to doing.

I encourage each CRPS patient to make physical therapy a part of their regular day; whether you go to a gym or if you do it on your own. Physical Therapy is not supposed to increase your pain but decrease it. Once you find a therapist who is familiar with CRPS then develop a relationship with them. This is your body and your disease; you need to be able to trust your therapist implicitly so don't hesitate to ask questions, educate them or even shop around until you find the best match for you.

To Sleep... Perchance to Dream

2012-02-18T01:36:00.000-06:00

(Originally Posted By Leslie Coggin to Living with RSD/CRPS at 7/24/2011 01:53:00 AM)

Shakespeare once said "to sleep perchance to dream." Unfortunately, those of us with CRPS don’t see sleep that often and we rarely dream. The question of sleep is one we often bring up.. How did you sleep, did you sleep at all, how long did you sleep.. But no one ever seems to ask us if we dream. Well... from my personal experience we don’t.

A person with CRPS does not go deep enough to achieve REM sleep which is where we dream. Our sleep is broken up into units of an hour or two at a time and it can get disheartening after a while. I tried to keep a normal schedule but found that since the pain was worse at night that it was hopeless. I had a doc tell me once that since I couldn’t and didn’t sleep like others then I ought to try different sleeping schedules. So, since I usually have no place to go; I sleep when I can, relax (meditate) when I can and stay active when I can but, still no dreams.

There are all kind of sleep meds for us; Ambien, Lunesta, Sonata, Trazadone etc... and I have tried them all with limited success. I’ve tried combinations of meds and meditation that I know will make me drowsy and sometimes that is not enough to bring on a nice, long, tranquil sleep. I keep trying though, hoping that the meds will help me nod off and occasionally they do but, its not consistent, But there is not one single med to help you dream.

I miss dreaming. Dreaming was a way for me to solve my problems, be creative and relax all at once. I couldn’t tell you what I had dreamed just that I knew I had. Dreaming was a way to recharge myself and let my outer self know what was going on with my inner self. Now, I feel kinda lost and sometimes stagnate. I usually go for four or five days with little to no sleep to find out that the next day I have crashed for 8 hours and still no dreams.

Perhaps one day when there is a cure for CRPS; they will discover a way to induce dreaming too. Wouldn't it be nice?!!

Oz the Great and Terrible

2012-02-17T03:53:00.001-06:00

Originally Posted By Leslie Coggin in Living with RSD/CRPS at 8/20/2011 09:24:00 PM

Meet Oz... or as I call him, Oz the Great and Terrible. Oz is a 6 year old rat terrier who is my rock, my strength, my touching post. There have been hundreds of studies showing that pets can have a favorable affect on the lives of people in pain. Stroking a pet can calm the nerves, lower the blood pressure, stimulate the senses and give a person an all-over feeling of peace and a sense of well being.

Ozzie is all that to me. He can actually sense when I am in pain and when I am hurting so bad that I want to scream. When the pain hits he stays snuggled up to my hip and will even lick the tears off my cheeks. He will stay next to me for hours and hours on end refusing to leave me to go to the bathroom or eat. If I get up he will follow me to the bathroom or to the kitchen and if I fall he will nudge me to see if I am all right.

Oz has a remarkable sense of when the pain will peak and knows when he can and can not put pressure on a limb. This fat, little furry arrogant baby of mine is my rock. When I hurt all I want to do is climb in the bed and have him there. I would love to be able to take him with me wherever I go but I don't think that he would or could be certified as a service dog. Right now he is fascinated by the power chair. I have it parked in a corner next to a chair and when I go to get into it h hops in the chair and then climbs into my lap. He loves to go speeding down the cul-de-sac with his paws on the arm of the chair and his ears pointed straight up and tongue hanging out... I swear I sometimes think that he wishes that he was a long hair breed so that it would be streaming behind him!

Naturally, it was rough in the beginning. He didn't pop out of his dam knowing about pain and how he could help... it’s like potty training... He had to learn. Sometimes it wasn’t easy; on either of us. But, like in everything, practice makes perfect.

I can honestly say that the best pain tool I have and the one that works most consistently is Oz..So, if you are hesitant about having a pet because of the pain then I am here to say that having a little something to love and who loves you unconditionally is absolutely priceless!

MRSA and Me

2012-02-17T03:47:00.002-06:00

(Originally Posted By Leslie Coggin in Living with RSD/CRPS at 2/01/2012 11:14:00 PM)

Everyone has MRSA or so I have been told. MRSA is a virulent infection that lives in the nars (nasal passages) as well as on the skin. If a wound occurs then the infection can colonize and become extremely contagious. Once MRSA colonizes then you are at a greater risk of having it recolonize if you should have another wound. The only way to treat MRSA is by IV antibiotics.

The week before Christmas I noticed that I had a small wound on my face that caused my face to swell. As each day passed the swelling increased until finally the wound abscessed. The pain was intense and finally on Christmas night I had my mother take me to the Emergency room where the doctors lanced it, placed gauze in the wound to keep it open and draining then sent me home with antibiotics and instructions to see my personal physician the first thing Tuesday morning. When Tuesday morning arrived I made my way to the doctor's office and was promptly sent back to the Emergency room where the doctors were told to admit me for IV antibiotics and scheduled me for surgery to put a drain in the abscess to alleviate the pressure and allow drainage. Unfortunately, I also tested positive for MRSA. I was to remain in the hospital until January 10.

People say that there can't be anything more demoralizing than being in the hospital over Christmas and New Years but, I can honestly say that there is one thing worse than that and that is contracting MRSA. When you have MRSA you suddenly become persona non gratis... that is to say that you feel like a pariah and that any moment the natives will be coming after you with stones in their hands. Every time a person walks into your room they put on a gown, place a mask over their face and wear gloves and if they do not gown up then the staff stands at the doorway and talks to you from afar. I suppose the combination of the time of year, the feeling of being a pariah, the inability to chew without pain because the abscess was on my face and the pain from CRPS made the New Year dreary and grey.
This is something that I would NOT wish on my worst enemy.

I am now at home and happy to be here. My dog, Ozzie, rarely leaves my side and I have NEVER felt weaker than I do now. On the positive side, my house has never been cleaner; my housekeeper boiled or bleached everything including the air returns, my bathtub, my sheets and the furniture. I purchased all new make-up because all of mine was thrown away for fear of contagion and I haven't had to cook because the church has provided me with casseroles galore! I also lost about 15 pounds when I was in the hospital and perhaps the biggest positive is that I was able to stop smoking!! There are changes that I have to make. such as giving up my lavender scented soap in exchange for a surgical cleanser, but that isn't a real sacrifice.

It is not an experience that I would care to repeat and it makes me appreciate my little home and the little things like going to the bathroom by myself, going outside and feeling the wind on my face, taking a bath and soaking in the whirlpool. I even enjoy doing my exercises again. I got the hospital statement from Blue Cross and the total bill is $125,967.28 of which I owe $1,325.00. Thank god for insurance!

Being sick is not fun but being sick and having MRSA just plain sucks!

Letting the Past Make Us Better… Not Bitter

2012-02-17T03:43:00.001-06:00

(Originally Posted By Leslie Coggin in Living with RSD/CRPS at 10/12/2011 08:11:00 AM)

A friend of mine, who has CRPS, and I were talking about losing our former lives and dealing with our new circumstances when she came up with the idea that we should turn it all around. We should focus on how CRPS has positively impacted our lives; "to let the past make us better not bitter". So I have begun thinking ... how has CRPS impacted me positively?

The first thing that came to mind is that CRPS has made me more appreciative of the time I have and the activities I am able to do. I do not take a walk for granted because I am not always able to walk. I appreciate being able to take a long soak in the bathtub and feeling the warm water soak into my bones. I appreciate all the small physical things that I am able to do because of the times I am unable to do them because of the pain.

The second thing that came to mind is how CRPS has affected my spiritual life. I tend to ask more questions, I want to learn more about the Bible and I want to explore the boundaries of my faith. I have more faith and trust that there is a reason I contracted CRPS. I trust that Jesus holds me in the palm of his hand and is watching my every move. I also tend to be kinder and more sympathetic to others. I used to pay more attention to my own personal wants and needs before those of others but today I find myself more concerned about others and more willing to get involved then I have in the past.

I suppose the third way that CRPS has changed me is that I am more prepared to face my own mortality. I used to be afraid of death so much so that I once worked in a nursing home. I find that I am more at peace now that I have arranged my affairs to MY satisfaction. I have written a will, placed advanced directives with my doctors and with my primary hospital. I have met with Pastor and discussed the type of service I want, what I want the sermon to touch on, the hymns I want sung and the verses I wish to be read. I have a burial plot and the peace of mind knowing that everything is going to be done the way I want it to be done.

It has been a long journey from diagnosis to today. I can honestly say that when you stop fighting the changes CRPS brings into your life then you can embrace life and living to the fullest. So, stiffen your back and your resolve. CRPS will dramatically change your life, it is inevitable but there are positive as well as negative changes. Look past all the down sides and focus on the positive; you will be more productive and happy if you do.