My Story with CRPS on World CRPS Day

Happy November 6, 2017! Today is my husband and my monthly anniversary and we celebrate 186 months being married today. More importantly, it is world CRPS day.

CRPS stands for Complex Regional Pain Syndrome. There are cases that date back to the Civil War and the disease/condition probably goes even further back. CRPS was called RSD (Reflex Sympathetic Dystrophy) until the 1990s and so older doctors commonly refer to it as RSD.

You can clearly Google if you are reading this blog so I won't proceed to tell you what defines RSD/CRPS. I will give you my account with this condition.

In 2011 I had a slight issue with my knee after running. I was 31. I stayed off of it and iced it for awhile and seemed fine. In 2012 I was walking a few miles and suddenly couldn't walk anymore due to pain. If I put weight on my knee, it would explode in pain. I did all the things people do and saw a doctor. An outpatient surgery was performed and the doctor saw my plica was causing the issues. You may not have heard of a plica because it is such a small part of the knee. I hadn't. 

My knee healed but I was more aware of my knee on and off. Another surgery was performed and this time the same doctor saw I had a meniscus tear. Another common thing. I healed and I walked for months on my knee. I made it into 2013 before having more issues.

I saw a second doctor who was older and (I thought) wiser. After the rounds of MRIs, another surgery was performed. The remaining part of my meniscus had torn and I had a slight tear in my ACL. This doctor gave me a full leg brace to wear for a month and I started having issues with nerve pain. The brace was removable and so I would sit and loosen it for an hour or two a day. It felt amazing.

The second "wiser" doctor said I should join the Y but I knew something else was wrong. I got another opinion and was diagnosed with CRPS. The average person with CRPS sees 7 doctors before being told they have it so I am truly one of the "lucky" ones.

It is here the story gets a bit foggy and if you want to see all I went through, feel free to search CRPS on my blog. I blogged through most of it.

The pain spread and I tried a lot. Some days you don't have the energy to try and just wish you were dead. I don't mean that in a suicidal way because I know suicide is nothing to take lightly. I just wished I wasn't existing. I would tell my 6'6", 225lb husband to lay on me because it would help me feel something other than pain.

Most people have felt nerve pain some time in their life. It feels like that sharp pain that shoots through a limb or area. To have it almost constantly is overwhelming. My brain was being overwhelmed by the constant "yelling" of my body.

My gorgeous sister's wedding in 2015. I'm the one sitting.

In 2015 we moved to Florida to be closer to specialists. We had dreamed of moving to Florida for years anyway so this wasn't a big sacrifice.

I changed my diet to include only certain fruits, veggies, nuts and seeds. I lost weight. We purchased a reclining wheelchair. I took a lot of strong pain pills. I withdrew from those pain pills. I took more pain pills. I was in bed a lot. I didn't drive anymore and a trip to the doctor left me with more pain so we limited any trips.

I tried Ketamine which is being used for CRPS. Ketamine broke my mind for awhile and left me with panic attacks.

And here is where the story improves. A year ago, November 2016, I tried a group of medications that was being used in Europe. Please know I am NOT saying these medications will help you but they started to help me. However this story isn't about my meds.

My body felt like it was getting more oxygen and the nerve pain stopped shouting at me. It was incredible and it still makes me cry to think about my past self being in such pain.

I now drive short distances after the FL medical board granted me my driver's license. I walk through stores. I get myself off the toilet and take showers without needing help. I eat more. Do I still have pain? Yup. Do I have pain that constantly overwhelms my brain? Nope.

2017, age 37

I have had so many people send cards, pray, encourage and message me. I had someone reach out and say they not only believed me but were "Team Mellissa". I have had a lot of help over the years and I have little bubbles of joy in my soul to have those people in my life.

CRPS doesn't have a cure. Yet. It has a lot of treatments that doctors keep throwing at it though. So, if you are reading this and have CRPS or were just diagnosed with CRPS, keep trying but only when your body allows it. Don't push too hard.

Happy November 6. I truly hope you make it to November 7 without too much pain.

August 2017 Update

Hi everyone! I went missing for awhile.



So, here is what has been happening since I last posted.

-My health is doing well most days. Compared to a year ago, I would call it great most days. I have a ton less nerve pain and honestly don't want to die almost 90% of the time. I really, really think the meds I am still taking helped me so much. The one that is working the most for me is Pentoxifylline. I seriously feel I can feel more oxygen getting to my limbs with this one.

-I am still eating healthy which boggles even me. Cherries, blueberries, peaches, green apples, bananas, spinach, some potatoes and softer nuts. I eat chicken every once in awhile (maybe once a month or less), especially now that cherries are in season. Thank you summer! Oh, and I had French fries three times when my mom was here. They were yummy, as you could imagine.

The hubby putting TV wires inside the wall.

This was quite the outfit to deal with the flooding outside.

-My husband is still amazing. I'm so blessed.

-My husband found out that he has an older sister! The story is long and I won't bore you. But through Facebook, his niece contacted him. He found out that his father had a child when he was 16, long before his dad married and had him. His newly found sister, brother-in-law, niece and nephew-in-law visited in April and it was an amazing experience. He always thought he was an only child!

-We also had one of my close friends and her family visit in early July and my mom visited in late July.

-April through July we were able to "entertain" more because of Percocet and my meds. I went off low dose Naltrexone as soon as I found out that my sister-in-law was coming to visit so I could take pain meds when I needed them. We ate out TWICE in April which we never do. I was able to sit for over an hour each time. Yippy!



-I am now starting to go off Percocet which is going to be about a two month process. It is hard to tell my hurting body that, although there is a bottle of something that will take away the pain sitting right there, it cannot have it. I'm also off Ambien completely. Woo-hoo!

-My panic attacks and the severest of my anxiety has absolutely decreased. These came after Ketamine and were pretty constant for awhile. The panic attacks are down to once a month? I still get that "out of body" kind of detached feeling that comes with denationalization disorder (which is known to stem from Ketamine) but meds are helping this as well.

-I have started to sell on ebay again. This is a love of mine that I have SO missed. Walking through a store feels like pure joy and a thrill still goes through my body that I'm able to walk and enjoy it. This is also partially due to Percocet so this may decrease over the next few weeks.


-We have been enjoying the communities heated pool. The water is around the 91 degree mark which I love. Florida has been 90-100 degrees most August days and I am loving it. I love the humidity, I love the "closeness" of the air when I step out and am struck with a wall of heat. I feel comforted by the intense heat and my body does better in it.

-We got a new air conditioner. Ha. Ours was 21 years old and was going strong until it wasn't. I love the family run business that installed our AC. The owner, Rory, calls me her daughter.

-I baked! Cookies and cupcakes were both so much fun to make for both our friends and the workers that have been in and out.

-Our indoor lanai flooded. Like flooded flooded. So much water. Our insurance ripped up the floors the same day we called them and has been pretty amazing.

-I chopped 10" off my hair the other day. I'll be donating it again and it is fun to have it light and flippy. 

(Can you hear how much I'm enjoying life again?)

My husband would say I'm painting too good of a photo with my words but honestly it is such a difference. Some days it isn't the best but it is still better.

I am SO appreciative to each and every one of you who prayed, encouraged and thought about me. Thank you from the top, middle and bottom of my heart.

CRPS & Life Update

Hi everyone!

Out of bed and doing great

CRPS UPDATE:

My set of medications (click here to see what I'm taking) are still doing their job. I'm having less nerve pain than I have had in the last 3 years and it has been wonderful! I've dropped the Memantine but am still taking the others.

I've been able to walk around more and get to the store a few times a week. I'm driving a few miles and it has opened up so much. I'm still eating healthy (fruit, veggies, seeds & nuts). I dropped the chicken and so I'm eating vegan right now. I really need to find a replacement to chicken that will keep me full. Any ideas? I'm thinking about volcano rice.

My next CRPS doctor appointment isn't until JUNE! I will need to get some blood work before then but that is still pretty darn amazing.

The anxiety and panic attacks have gotten better. I started having issues after Ketamine 14 months ago but it has gotten easier over time. I'm doing great during the day and seem to only have issues at night.

My side effects from the medication are stomach issues, feeling winded & dizzy, exhaustion and my mouth and lips still being really dry & cracked. However, a humidifier and some other things people have suggested have helped with my dry eye sockets & sinuses so that is a wonderful thing.

I'll be staying on these meds for at least another few months and then we may choose to decrease a few and see if the nerve pain comes back.

I have permanent nerve damage in my right toes but I've gotten use to the numbness and it doesn't hurt.

LIFE UPDATE:
My husband & I are still loving Florida. It has been fun to get out more and enjoy the state from outside my bedroom. We went to the beach last week and we should be able to swim in the Gulf in about a month or so. It is regularly in the high 70s/low 80s and I'm excited for the humidity that summer brings.

It is amazing how much better life is when you aren't in pain.

My husband & I have been walking and have walked a mile three times. It still creates pain that puts me down for a day or so but it is a clunkier kind of pain that doesn't shoot fire through my nerves so as long as I stay off my legs, I'm okay. I'm gaining muscle mass again and have put on some weight. All great stuff.

My blood feels like it is carrying more oxygen to my limbs and feels like it is flowing better. Some days it feels a little too thin and I'm wiped and I get winded super easy so we (the doctor & I) are still playing with the Pentoxifylline. I really feel like this medication out of all of them is working the best.

Compared to where I was last year, the improvement has been amazing. Life changing.

Thank you for all the thoughts, prayers & encouragement!