Hello everyone! Welcome back to the Grace for Every Season Blog! In my first blog post, I had mentioned that for my next blog, I would be talking about the word Grace, but I am going to postpone that blog until the next time. Instead, in honor of all the people like me around the world who live daily with CRPS, and because November is CRPS awareness month, I don’t want the month to go by without acknowledging it and using this platform to help spread awareness.
I have written and re-written this blog several times. When you live with something daily, you want to educate people who may have never heard of it, but sometimes you find that hard to do without essentially turning it into a whole book to read instead of a blog. For that reason, I have decided to just give you some basics, so that you are more aware of this condition and what those of us who live with it go through each day, and yes, it is still pretty lengthy, but worth the read. Also to note: all this information comes from my own personal experience, along with information gathered from the website http://www.burningnightscrps.org A big thank to them for all their wonderful information. They also have some wonderful graphics that condense the information into an easy to look at form.
So, What exactly is CRPS? Well, simply put, CRPS (formerly known as RSD) is a multi- system disorder, characterized by severe pain in the affected extremity(ies). But that doesn’t even begin to describe what CRPS really is, the symptoms it causes, and how it affects daily life. A person with CRPS can have all the symptoms or only some of the symptoms. Sometimes a person can even go into what’s called a “remission” where they improve and don’t have any of the symptoms of CRPS, but even then the persons CRPS is always there, just waiting on the next time it decides to start causing problems again. In my case my symptoms are always here with me 24/7, and I have just had to learn to deal with them and the pain as best as I can. Many people only develop CRPS in one extremity, but it can spread to other extremities. In my case, it has spread to all four extremities within a 2 year time span.
What are some of the symptoms of CRPS? *PAIN: burning, icy, gnawing, throbbing are some just ways to describe it, and the pain is usually out of proportion to whatever illness, surgery, or injury that caused the CRPS. *CHANGES IN HAIR/SKIN/NAILS: this can range from hair loss, too much hair growth in the affected area, brittle hair and nails, issues with ridged, and damaged nails, and decreased nail growth. *SKIN CHANGES: this can also vary but can include one or all of these: changes in skin temperature, excessive sweating in the affected area, hypersensitivity- also known as allodynia, thinning skin, shiny skin, cracked, blotchy, spotty, stretched, drying skin, wasting, texture changes and several others. *MUSCLE AND JOINT ISSUES: these include weakness, stiffness, contracture, loss of movement, tremors, spasms, jerking, dystonia, and wasting. *CHANGES IN CIRCULATION: lack of circulation, blood vessel constriction, and even infection, septicemia and gangrene in severe cases. *OTHER SYMPTOMS THAT CAN OCCUR: issues with eyes or teeth, migraines, headaches, depression, anxiety, excess stress, sleeping issues, insomnia, problems with the urological, respiratory, cardiac, and gastrointestinal systems, and reduction in bone mass or osteoporosis.
So do I really have that many symptoms? Unfortunately, yes I do. I have had and still have most everything on the list excluding just a few. I won’t go into which symptoms I have, or don’t have, but just be aware that someone with CRPS may look ok on the outside, but we are dealing with what is to most people an invisible disability. It is not fun in any way shape or form to deal with these symptoms continually twenty- four hours a day, seven days a week. The pain never ends for me. It does go through periods where it is more tolerable, and other times where is worsens, or even flares up to a more severe state. I am thankful that I have a pain medicine physician that treats me, and I’m thankful that he is caring, and helps me to keep my pain under control.
How do you treat CRPS? There are several different ways you can treat the pain and symptoms of CRPS. I won’t list them all here, but only the ones that I myself have had. Each person is different on what helps keep their pain and other symptoms under control (well as controlled as you can in a disorder that affects your sympathetic nervous system). *The first order of treatment that I had was Physical/Occupational therapy for the affected extremity. This was actually started after I had my surgery that caused my initial diagnosis of CRPS, but was continued for many months to help me after my initial diagnosis as well. *Opioids are another way that the pain symptoms can be helped. Of course, most of us don’t want to have to take narcotics the rest of our lives, but those of us with CRPS oftentimes it is a must in order to go through daily activities. *Massage therapy- I undergo massage therapy as often as I can in order to help my circulation, and help with my pain. This is not something that for what most of you would think is a relaxing time. This is literally a therapeutic time where often times it just down right hurts, but is helpful in the bigger picture, so it is something that I need to do to help myself. That being said, if you happen to be someone who has been diagnosed with CRPS and happen to be reading this, I would only go to a massage therapist who is either aware of, or willing to learn about CRPS, and how the treatment they use will affect your body. Even with my own therapist, there has been a time of trial and error where certain techniques may in essence flare me off for a while, so we have learned to avoid those, and stick with those that actually help. *CBT or Cognitive Behavioral Therapy is another thing I use to get through my day. It is something that my husband was taught to do when he developed a chronic pain condition, so thankfully I already knew the basis and premise of it when I developed my CRPS. There are many different things that CBT is used to treat, and several psychologist and counselors out there who use it for specific things that they are treating. For me it is essentially a way to keep my thought processes healthy, thereby helping me to deal with my pain levels, anxiety, and other symptoms. If you want to know more about CBT and how it is used, I urge you to look it up. So many people have told me things like “how can you smile if you’re in such pain?” or other unhelpful things such as that. But my CBT and God’s grace is what keeps a smile on my face even through the pain, because the opposite just isn’t where I want to be every day of my life. Of course, I have bad days where I fight to stay smiling or happy because the pain and the CRPS can just get you down, but I refuse to give up and give in. I just pray that God will help change my mindset that day so that I can get through the pain. *Sympathetic Blocks- I have had so many of these, and I have had both the Stellate Ganglion blocks (which dealt with my upper extremity CRPS), and Lumbar Stellate Blocks (which help treat the CRPS in my lower extremities). *Spinal Cord Stimulator- I had a Spinal Cord Stimulator placed to help with my upper extremity CRPS in August of this year. There is a possibility in the future, that I could have to have a revision on it to add leads in for the CRPS in my lower extremities as well, but for now, we are continuing to treat those with the Lumbar Stellate Blocks.
How can I help someone with CRPS? Well there are many ways you can help someone with CRPS. You can pray for them. You can help them by making a meal, bringing a purchased meal, helping to clean their house, take them on errands, be the driver for their procedures, etc… Those of us with this condition often cannot do those simple tasks for ourselves, but we won’t always ask for help, so don’t just offer the help- just go ahead and take it upon yourself to just bring the food, or come on over and just say, I’m here, what can I do for you today? If you can, offer to pay a bill for the person. Many with CRPS have lost their ability to work or hold down any type of meaningful employment, (and many have been fighting to get or keep Long Term Disability and Social Security benefits) but yet regular bills and medical bills keep piling up, so finances get very tight. If you’re able to do this, it’s a huge help. You can’t take the pain and symptoms of CRPS away, but you sure can help the person by doing just those simple things that most people take for granted. I promise you that your kindness will be so much appreciated. Let them be real with you, and not feel as if they have to “put on a face” just to be near you. If you are a close friend, I will assume that you have already figured this out, but if you have not, here’s your opportunity to do so. Be creative and think about ways that you can help. If you’re not sure, then again just ask the person directly how can I help?
What is not helpful for someone with CRPS (and for people with other chronic conditions)? Treating them as if they are making up their illness or their symptoms. We should not have to prove to you how we feel or what we are going through. Assuming that because they were able to get up and get dressed to head out for errands or such, that they feel fine or that their pain is absent. Life must go on, and most of us still want to be able to go out and do our own errands even though we may feel terrible. It’s good to be able to look at things and be with people outside our own homes. Telling someone how great they look in an attempt to make them feel better. Believe me, if the compliment is truly something you mean, by all means, compliment the person, but what I have found typically is that people don’t really know what to say, so they feel that by telling you that you look great, it must be helpful in some way. Please just treat us instead like you would anyone else. There are many times when told this I do have to resist the urge to be sarcastic and say something like, ” well its good that I don’t look how I actually feel”. Again- this doesn’t mean you shouldn’t compliment the person, but please don’t do so out of the lack of anything else to say to them. Don’t talk about them behind their backs or gossip about them. Don’t feel sorry for them- they don’t need your sympathy, just your understanding. Don’t leave them out of invites to things just because you assume they won’t come. Believe me, we want to go places, and have things to look forward to- just don’t be hurt when we accept, but maybe have to cancel out at the last minute because we just can’t do it that day after all. There are so many other things I could list here, but I hope that by listing these it helps you to understand how these things are not helpful to a person with CRPS (or other chronic illnesses).
I hope this helps you to have a bit more awareness of CRPS, it’s symptoms, and how it affects the person living with it. I am thankful that God has allowed me to use this blog to increase awareness and help others understand. Until next time! Elizabeth
Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. Hebrews 4:16 NIV