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!

December 2016 - YOU GUYS!

Happy New Year's Eve!

The fireworks here in FL started at 4pm (it doesn't get dark until 6ish so why?) and my husband performed at 3 different retirement communities today.

This pretty tree was along side the road, in the box.
"We" set it up, I listed it on OfferUp and it sold within a day. $25 in our pockets!

This mirror was also free and it sold for $10.
Our real Christmas decor consisted of a little manger scene, some other free decorations and this GORGEOUS tapestry which was gifted to us by a very special person. Thanks Aunt Myrna!

So the real news is: My meds seem to be working. About half the days I'm totally wiped and sleep 18 hours (no joke) but other days, like today, I have energy. I've been out of bed every day. I started walking last week about 1/8 of a mile and this week I made it to 1/4 mile. It hurts but I'm doing it. I'm ridiculously slow (like less than1 mile per hour slow) but I am celebrating!! I've been off pain meds for 2 months and am slowly cutting back the Ambien.


To see my medication plan, click here. It will take me a while to work up to the full dose of the last medication but I started it and it seems to be going pretty well. Side effects include having dry eyes (who knew eye sockets could hurt so much), dry sinuses, dry mouth...basically dry everything. My stomach isn't the happiest and I am truly exhausted some days. But the nerve pain has absolutely decreased overall. I haven't wanted to die in days. I cannot believe that after 3 years, I am feeling like I want to live on a daily basis. YOU GUYS! I'm pretty excited, if you couldn't already tell.

"Our" beach added this new fancy sign. Go Anna Maria Island!

A random beach day at the beginning of December. We live 8 miles from the beach and it was sunny where we were. Then we crossed over the Anna Maria bridge and FOG!

The beach on Christmas Day. It was 86 degrees and sunny. We LOVE you Florida! The water was still shockingly cold but there were people in the water. It was fun to see their shocked faces as they entered though.

Other happenings include: my husband finished the pavers in the front of our yard area. They look so good. I know they won't be everyone's cup of tea but I love them. They make me so happy.

I'm still eating healthy and added balsamic vinegar & olive oil which makes salads much better. (Except vinegar on bleeding chapped lips = not good)  I do miss pizza though. So much. And donuts. And anything with cheese. And basically I miss everything except fruit, veggies and chicken.

Still, it is helping so I feel it is still worth it. And now some random selfies.  The sun glasses are worn because light hurts my eyes some days.

 And on the last health note, I went to have my blood levels checked and my kidneys & liver are good. My vitamin D is "pitiful" but that is nothing a bunch of vitamins won't fix (we hope). And I don't have to get it checked again until March. Fancy that.

These dishes made me smile. We like blue. A lot.

A new year is making me excited and I'm hoping to work up to walking (more) without pain, sitting without pain and starting to do stuff again. I'm coming for you, 2017. But first, a nap!

I truly hope you have a joyous New Year's!

CRPS & Medication Update - "Poly Pharmacy 2.0"

Hi everyone! This post is going to be geared toward CRPS. I have been wanting to post this for weeks and I have finally have a bit of energy so here it goes....

I posted about Neridronate a few posts back and if you would like to hear more about that, click HERE. There are some great comments including information on how to go about having those infusions. Thank you to Marty who has posted her experience in the comments and gave amazing information!

For those that found me through a Google search, welcome! My name is Mellissa and I was diagnosed with CRPS type 1 after having 3 knee surgeries for a torn meniscus. Since then it has spread several times. My husband and I moved from PA (cold!) to FL (warm!) just over a year ago. I have some wonderful doctors down here which has allowed me to try some new things.

I read two books recently on CRPS. Please note these are just my opinions and you may feel differently. The first was "Putting Out the Fire" and is now $23 on Amazon ($10 for an e-reader). The first half of this book has some great information if you are new to CRPS. It does touch on what supplements to take and what dietary information is available. The second half of the book discusses this particular doctor's method of treatment. She is a chiropractor and her method incorporates different machines and non-invasive methods. I believe (again, just my opinion) a few of her methods are similar to Calmare.  

The second book is called "CRPS Survival Guide" by Chris Allen. This book is $50 on Amazon ($30 on his website as an e-reader download). This book has a lot of information. It is written by someone who had/has CRPS and goes into more detail. It also gives great information about vitamins/supplements, different treatments (including Neridronate, Ketamine and more) and what you should/shouldn't be eating. There is also a chapter titled "Poly Pharmacy 2.0". This group of medications was given to the author by a doctor in Germany and helped him greatly.

Because I have tried almost everything out there in the last 3 years, I researched the group of medications and took the top 4 (they are labeled "critical" in the book) to my doctor for review.

I have been eating radically different (my diet consists of raw spinach, berries, bananas, chicken breast, raw pecans and honey), taking the recommended supplements (a few include vitamin C, vitamin B12, omega 3, vitamin D and a multi vitamin) and doing physical therapy on my own. I have been seeing both pain specialists, two CRPS doctors and my family doctor and was given the chance to take these medications without traveling to Germany.

I am not a doctor and am far from it so please (please) check with your doctor before starting any of these. They may not be for everyone.

Here are the four medications: 

1. Naltrexone 4.5mg - this will most likely have to be compounded for you. This is a very low dose of Naltrexone and was also prescribed to me by Dr. Hanna from the Florida Spine Institute. It is a fairly common prescription for those with CRPS. However, you will have to be off of narcotics & most other pain meds before taking it.

2. Pentoxifylline ER 1200mg - this is a blood pressure medication. Now I don't have blood pressure issues (thankfully!) and so I am taking only 400mg. I would love to work my way up to the recommended dose but anytime I go over 400mg, I start to have side effects.


3. Amitriptyline HCL 75mg - this is an anti-depressant that works on your central nervous system to increase the level of certain chemicals in the brain. I am currently on 1/2 of a pill, so about 37.5mg, and am trying to work my way up to a full pill.

4. Memantine HCL 10mg - this is a medication for those with dementia. I have yet to start this medication.

I am taking two other medications along with these but these are the four specifically mentioned in the book. The book does touch on other medications but these were the "critical" (their word) ones for CRPS.

My pain specialist gave me the green light to get myself off of narcotics and start these. He knows how hard I've been trying and is monitoring me along the way.


Here is my experience:

I had to be off narcotics for two full weeks before starting these. That was rough. I stopped at the end of October which meant I couldn't start these medications until Nov. 14, 2016. My doctor did prescribe Ambien to help at night and agreed that it was fine to take a partial pill during the day if the pain got to the point where I couldn't take it. A month later, I'm still on it. I have decreased my dose and hope to be off of this soon. But, if I need to be somewhere (i.e. the doctors) and am having pain, I do still take a bit of Ambien which does help with the nerve pain.

I had absolutely no side effects to Naltrexone. This is usual because the dose is so low. And I have been on this in the past.

My blood pressure is normally on the low side of normal and so I am currently only taking 400mg of Pentoxifylline when the book suggests 1200mg. My doctor is amazing and told me to start low since I may have side effects. The side effects from this medication have been being extremely light headed whenever I move my head. I haven't blacked out completely but my vision does go black and I hear that rush of blood to my head (it sounds like when you put your ear up to a seashell). I have been on this medication for a month and it still continues. But now I know to be careful whenever I change elevations.

I have also had side effects with Amitriptyline. I started at 1/4 of a pill (about 19mg) and did okay. I have since upped that to a 1/2 pill. I have tried 3/4 pill and struggled. My side effects range from exhaustion (sleeping 16 hours a day) to feeling a tightness in my chest and feeling very winded. It isn't scary thankfully but I would struggle to speak several sentences in a row. Now, I do have anxiety which was diagnosed after Ketamine 11 months ago. So I am sure that is not helping. But again, it doesn't freak me out. It is just there. I have also had nausea, headaches, dry mouth, dry lips and pain in my eye sockets. It is more of an aching pain behind my eyes but it is there. I'm also sensitive to any light so occasionally I have to wear sunglasses or stay in a dark room. These go away if I drop the dose back to 1/2 pill which is what I have been doing. I've experimented a few times and they come back at 3/4 pill. I know my body is very sensitive to medications (and foods) so I'm sure this wouldn't happen to everyone.

The book suggests getting up to the full dose (75mg) before starting Memantine. Memantine comes with its own side effects and supposedly taking the full dose of Amitripyline helps with these side effects. I haven't yet been able to take this last pill.

Are the side effects worth it? Yes. I start to think they aren't when I'm having less pain and kind of "forget" for a few minutes that electric feeling that seers your inner body. But I would choose exhaustion, aching eye sockets, dry mouth and being winded over pain any day.

Can I jump back into my "old life" at this point? Nope. Two days I ago I was only awake for 6 hours the entire day. I am struggling to speak without having to catch my breath. But compared to a month ago, the nerve pain is getting better.

Before these medications, I was taking narcotics and taking them regularly. Even with them, I would feel like wires were being jammed in my nerves. The electric feeling like you are on fire within would be pretty bad at times and sometimes just cause me to wince. I would not have been able to walk a small grocery store even with the narcotics. Because I have CRPS in the front of my hips, sitting was also hard to impossible. Sitting compresses the nerves which makes the pain shoot down the front of your legs, ankles, feet.

I have seen a change since taking the medication so far. It has only been a month but I feel like my body sometimes has more oxygen. I have had 3 amazing periods of time (lasting 1-3 hours) where instead of pain, there was a cool feeling in my nerves. If you have CRPS,  you can probably trace exactly where the pain is. It isn't a vague "oh, it is in my lower leg" feeling. You know exactly where it is and how sharp it can be. The burning may be more vague but that electric shock can be traced exactly.

I cannot even describe how those 3 periods of time were. I felt such a difference in my body. The absence of pain was incredible. I haven't felt like that in a very long time. Of course my mind, during those times, jumps right to "what can I do" and "how soon can I go back to work", thinking that they would last. They didn't but it was enough to give me hope.

I went for blood work today to see how my levels are doing. They checked everything from vitamin D to liver function to cholesterol. I have been working very hard on not overdoing it but I did walk around an actual store last week during one of the good times and it was amazing. Was I hurting afterward? Yup. But it was wonderful. I was probably on my feet for 10 minutes. That was the first time I walked for 10 straight minutes probably in well over a year. Sitting is still very rough, even after a month on these meds.

One thing I hope to be able to do is go to a movie with my husband. We haven't been in 18+ months and it would be such a fun thing to do. The CRPS spread to my hips early November (2014) and it would be really rough for me to sit through a movie now. We watch TV shows at home if I'm up to it but I lay down on our couch and can move if the pain gets bad.

It has been a tough road. I am a firm believer that everything happens for a reason and I absolutely know that God has been using CRPS to teach me lessons and hopefully use me, whether now or in the future. You can easily search "Ketamine" or "Calmare" on this blog and see that I have had real hope before. And so it is a bit scary to try to believe that this will work long term since nothing has.  But try I will and I will hopefully keep you posted.

(Again, these are my opinions and thoughts. I get absolutely nothing from you purchasing either of the books. Feel free to leave your thoughts in the comments. I appreciate hearing from those with CRPS and how they are coping.)

November 2016

Happy November from Florida! It has been in the upper 70's, lower 80's consistently here. We've been to the beach twice in the month. My crazy husband even went into the water this past week (after working out) but the gulf is pretty chilly. I wore a jacket to the beach and didn't even dip my feet in. But it is gorgeous and relaxing and we love it.

November 7 was the day that acknowledges those who struggle with CRPS. Do I want to be part of that group? Nope, nope, no. But, I did wear orange and post a few things on social media. It happened to be a "doctor day" (most Mondays are days we go to the doctor) so we took this quick photo before we left that morning.

(I cannot figure out why the rest of the blog has blue font. I've tried repeatedly to change it to black and it just goes back to blue. Sorry about this.)

I am officially back off narcotics. I'm only taking one medication (Ambien) at this point because tomorrow I'm headed to my pain doctor. He agreed to try four medications that they are having success with in Germany. These aren't normally tried here in the US for CRPS but he agreed that I've been giving this my all. I'm tired of trying. I just want something to work and to move on with life. I needed to be off narcotics for two weeks before my appointment tomorrow. So after my sister & brother-in-law went home, I went from 8 pills to 0 pills within 9 days. My withdrawal wasn't terrible and I'm so thankful for that.

I don't like the taste of alcohol and it had been two years since I had it last.
But the hubby went to get me some Mike's Hard Lemonade two weeks ago.
It made me fuzzy, nauseous and overall didn't work great.
Plus I think my body hurt more after it wore off. Darn.

 Without pain killers, things have been rough around here. Ambien dulls the pain slightly and so I've been using that when things get at the point where I cannot function. And I'm thankful to have it. We are praying that this next treatment helps. It works with the glial cells. 

My inversion yoga trapeze

For the first two years of having CRPS, I really relied on doctors. I still trust them but I've been trying to keep on top of things now. Since Ketamine in January, I have completely changed my eating, read everything that comes out on CRPS including two new books this last month, joined encouraging CRPS groups and watched for people that were being helped, taken more vitamins & supplements, done more physical therapy, tried more natural remedies and...the newest thing...taken out as many chemicals as I can from my routine. Which means I've been brushing my teeth with a glass pot of basically clay & spearmint. Ha. Hair care, skin care, anything that touches my body or goes into the air - I'm trying to make it more natural. I don't think using toothpaste is affecting my pain but I am giving this my all. 

My food now includes: raw sesame seeds, cashew butter (made from roasted cashews & sea salt), raw pecans, spinach, bananas, strawberries (organic), raspberries (yum!) and chicken. The chicken is all natural, yada yada yada. I'm not loving that I'm eating chicken but I get hungry and it doesn't affect my body negatively. I did try spaghetti squash last week and that was a no. I am sure it would be great with pasta sauce though. I also gave apples a go but my teeth are too sensitive to eat things that hard. If you have any suggestions about what to add, feel free to message me. I'm also mixing in a "super greens" powder into water.

Remember when we had a hot tub in our living room? Yup, we tried that too.
(We realized the chlorine in the house was a BAD idea and returned it)

My husband hammocking which was cracking me up.
He is so giant in my hammock.

 Other happenings around the house include my husband laying pavers outside. Our villa has two "secret gardens" (i.e what our realtor called our small front & side yard). We has been collecting free pavers from Craigslist for months and I kept telling him to put off the project until autumn when the weather wasn't 95 degrees. Well, it is autumn. He has been working on it for weeks now and it is looking great.

He collected different sizes, textures and colors. And...the best part was that I "sat" (reclined) and told him which pavers would go where and he dry laid them. Then he dug up the yard and really put them there. My brain loves things that are spacial and it was such a fun puzzle for me. I love him for including me. He did all the hard work and I got to do the fun part. Here are some photos from last week but he has already put vertical pavers around the palm trees and made it into a raised bed.

My favorite part of the design was the vintage bricks that came from St. Petersburg and were made in the early 1900s. A few of them have the original thumb prints from when they were made. Swoon.

We have lived in this home for 1 year as of last week. Which means we have lived in Florida for over 18 months. The weather has been incredible, my doctors are amazing and this home has been great for us. I hope the next year will include me getting out more and perhaps some friends! And of course feeling much, much better.

My friends from PA have been incredible and even dressed in orange to support me from afar on November 7 but I miss actually doing stuff with people.

Some selfies from this last month:

 Some better days, some days that I wasn't doing as well.

Thank you to my penpal Megan who sent me some fun things from PA!

A throwback photo from 4 years ago when we were managing a retirement community.

 I hope everyone remembers to seek the small joys in every day. I'll try to give an update of the new medication when I can. :)