A Letter to People Without Chronic Pain

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

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

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

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

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

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

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.