Pain Management

After my orthopedist told me that I have CRPS, he told me that he was referring me to pain management. This seemed kind of odd to me, because my main symptom was not pain. I know that I am very lucky for a multitude of reasons and I definitely do not take that for granted. Many, if not most, people with CRPS have debilitating pain and spend a long time without a diagnosis. CRPS is rare, only about 200,000 people are diagnosed with it each year in the US.

The orthopedist was very casual about the diagnosis. He said that I would go to see a pain management doctor and get a shot that would “reset my nerves like rebooting a computer.” When I told my family and friends about my diagnosis, I said “it sounds bad but it’s really not that bad, I just need a shot.” I learned quickly that it is a complicated, chronic, incurable illness. I may experience remission but CRPS does not have a cure. I am very thankful for the CRPS subreddit, because without the people there I would not have made sure to take the first available appointment with the pain management doctor.

“People living with CRPS have pain that is much greater than normal, even without a visible injury. Other symptoms include changes in skin color, temperature, and/or swelling on the arm or leg below the injury site. CRPS symptoms may also change over time including the type of pain, skin color, and temperature changes.” – National Institute of Neurological Disorders and Stroke

My CRPS is Unusual

I was diagnosed four weeks after getting the hard cast off my leg and I noticed the symptoms around that same time. My symptoms are predominantly swelling that will not go away; fluid retention; and numbness. I am thankful that my pain has not progressed beyond about a 4 on a scale of 1-10. I know that could change at any time, so I am practicing gratitude for any low-pain days that I have.

Getting a quick diagnosis meant that I have a good chance of experiencing remission. I had my first nerve block 10 days after my diagnosis. Since then, I have noticed several improvements. It is easier to walk; some of my swelling went away; I’m not experiencing tingling and numbness any longer; and my pain became more localized. Instead of having pain all over my foot/ankle, my pain is in places that make sense, like where the break is still healing.

Things I have been doing to help with my CRPS:

• Taking the medicine that the doctor prescribed, even though I really didn’t want to.
• Physical therapy twice a week.
• Doing my PT exercises at home on days I don’t go to PT.
• Weight training and using my recumbent bike to build endurance and keep moving.
• Making myself walk on my “bad” foot instead of using the knee scooter all of the time.
• Taking vitamin C, Omega 3-6-9 supplement, and extra vitamin D.
• Eating more protein.
• Eating less processed food to try to reduce general inflammation. I am going to continue trying to eat less convenience foods.
• Getting as much rest as possible.
• Continuing to elevate my foot whenever sitting to help with the swelling and fluid.

Nerve Blocks for CRPS

I did not read up on the nerve block prior to having it and I wish that I had! I thought that it was a simple shot like an epidural. In fact, your doctor uses an X-ray to find the correct nerve to inject. I opted to do only local anesthesia and there were a couple times when the pain was much more intense than I anticipated. Lying on my stomach, wide awake, trying not to think about what exactly was happening was a bit much for me. I will need a second nerve block and I plan to be sedated for that one. If only because I worried that me saying “ow” and moving kept my doctor from being as thorough as he would have been if I was silent. That is likely not the case but it is something I worried about! I have some soreness around the area where the needle was inserted but nothing beyond soreness.

Since the first nerve block four days ago, my physical therapist has noted that I have made quite a bit of improvement. I know that it could be temporary. I have to caution myself to not expect more than I should. Walking with just a brace and a walker has been incredible! Walking with just a boot and being able to carry something is incredible too. I was able to water my plants and to ice dye two sweatshirts that have been ready to dye since before Christmas.

I hope to be able to begin doing some more things around the house so that my husband can get a break. For the last 12 weeks, he has had to do all of the cooking, housework, dishes, laundry, caring for our dogs and for me, and I know it has been overwhelming. We usually share the chores and it is hard for me to not do my part. I know the tendency is to overdo it once you get a nerve block so I am trying my best to keep my activity to just slightly more than it was prior to the block.

My second nerve block is scheduled for mid-May, so I will blog about that after it happens.

Trying Not to Be Afraid

I am very much trying to focus on now, rather than be afraid of what might happen in the future. I know from reading about other people’s experiences that my condition can worsen if I injure my foot/ankle again, or even for no reason at all. I want to keep living my life, even if it means doing less than before. We have a trip planned to meet up with friends in May before my second nerve block. I plan to take my wheelchair in case I need it. I will likely still be using my walker or maybe a cane by then. I know that invisible illnesses can, and often do, draw ire from ignorant people around you that don’t believe there’s something wrong with you unless they can see it. People who only sometimes use a wheelchair or scooter get hate from those who think it’s only permissible to use a wheelchair if you have to use it all the time. Luckily I have been weird and different my whole life so I don’t really care what strangers think. I have accepted that my mobility may be limited for the rest of my life. For as long as I can, I am going to do what I normally do and modify it when needed. 

I know if anyone with CRPS reads this blog, they may be angry that I am sharing my experience even though pain is not my primary symptom. That is understandable. I am constantly thankful that I was diagnosed and received treatment so quickly. That may keep my pain from progressing over time but it may not. I certainly do not want to make it sound like this illness is easily manageable because many people who have it live in constant excruciating pain. Even a soft breeze or a sheet touching the impacted limb can cause extreme pain for those with advanced CRPS. Ultimately this is really just a place for me to put my thoughts and process things. I also want to document my journey so that I can look back and have valuable information, if needed.

So, that’s where I am at. Today is an ok day and we will see about tomorrow when it gets here.