Arlene's CRPS Treatment

Hi, my name is Arlene Perez, I'm 26 years old, and I was diagnosed with Complex Regional Pain Syndrom(CRPS)as of 3/25/2016. It has taken me about 2 years and a lot of pain and suffering to finally figure out what is going on with me.

It all started 2 years ago when I had a bad slip and fall. It started with pain and swelling in my right leg. More specifically my knee down to my foot. I could barely walk for about 3 months because the pain was so bad. After those few months I started trying to do some minor exercises to get myself back to where I was. But I noticed my symptoms weren't getting any better, but gradually getting worse. My low right back started hurting, all the way down to my knee. i couldn't walk much because of the pain, so my exercises were limited to just mainly walking. Just walking seemed to make the pain better but worse at the same time.

Now I've had back problems since I was 19 years old, but I knew this was different than any other time my back was hurting, or  threw it out. I had to start sleeping on a recliner because when I would sleep on a bed my pain in my low right back down to my leg was so severe, that it would take me about 10 minutes just to get myself out of bed. It was easier to sleep on a recliner because as I would  get back up I didn't have to struggle to push myself up. During this time I was limited to where I could go. I could only go shopping for groceries or personal items for about an hour and a half to two hours before the pain got worse. This went on for months and I was unable to see a doctor due to not having insurance and also I was not working. I've suffered from severe depression and anxiety since I was 11, and photography is one of my passions. So before I got sick I would take photos when I could as my way of making money. I have very bad social anxiety so I was trying my best to get any gig I could when I could. I wasn't making much but I still was making some. After I got sick I was unable to do my photography. My other passion is cosmetology and that pretty much went out the window also. Just sitting to do my makeup was too painful for me.
  After about 7 months of dealing with this I decided to try some stretches thinking it would help my back since that's what I always did before. And that this pain would probably go away after a bit of doing this. I was doing my stretches for a few weeks and it seemed to be helping a bit. I felt a bit better walking and standing, but the pain never really went away like it used to before. I figured let me just keep at it and eventually it will go away. One day I was stretching and felt something pull in my right leg just from a slight stretch. That's when everything just got worse from there. As soon as that happened the swelling in my right knee and foot instantly came back. I also noticed when I put pressure on my foot it was too painful again. I thought ok, I just reinjured it but I will get better. I was wrong. The next day after that i noticed my right leg  felt like they were vibrating. Almost like a cell phone on vibrate that never shuts off. Then I noticed it was hurting to sit. My butt was in so much pain and would go numb just from sitting upright. I thought this was just temporary. The next day I woke up I realized the same thing was happening to my left leg. Now I knew something was wrong because that was my good leg. I never injured that leg. Then not to long after that I started to get stiffness and severe pain in both knees. I started getting what I thought was anxiety and said I had enough and finally went to the emergency room. They x-rayed my right knee since that's where the swelling was thinking that was the problem. Nothing showed up except some fluid in that knee. They sent me home with a reccomendation to a doctor to get the fluid out, even though it was minimal. I never did do that because when I called to see how much that would be I just could't afford it. Not only that but I knew my issue was much more than just fluid in the knee.
 
That's when the medical bills started coming in. The bill for that hospital visit was about $3,000, and I did not have any money to pay for that. A few days later I noticed it was getting even harder to walk. My left leg which was supposed to be my uninjured leg was in so much pain I couldn't straighten it out. It also felt like my calve was like jello. That feeling scared the crap out of me. I had never felt this much pain in my life. I have thrown out my back a few times in the past and thought that pain I felt then was the worse, but no, this was. I ended up having to go back to my mothers house from my now fiances place because the pain was so severe I needed care 24 hours, and my fiance had to work so couldn't be there all the time to help me. I had severe pain and trouble just walking from the couch to the bathroom. Then I noticed I couldn't move my toes. When I would try to wiggle them the pain would just increase. I was crying every single day from how severe the pain was from my low back to both legs and feet. My toes and bottom of my feet  were also so cold, clammy, numb and had a pins and needles feeling. It got to a point where both of my legs felt like they had weights on them, and I couldn't even straighten them out.
Then I noticed my body started leaning to the right. Like my spinal cord was slowly curving. That made it even more difficult to stand and walk. It got to a point where I couldn't even stand in the shower. I had to get a chair for the shower and even that was still painfull. I also needed assistance showering, and even dressing, because I couldn't bend down, bend my legs, or lift them.

At this point I had ended up in the emergency room 4 more times within the course of 2 or 3 months. They would all tell me the same thing, that it seemed like I had sciatica. They would give me flexiril and an injection similar to ibuprofen but stronger. None of it helped. I still had that pain. One doctor in the E.R finally did tell me what I thought was anxiety was actually my body stressing out from the pain I was having. It mimics anxiety but is not. That made sense since I've had anxiety since I was 11 and it would always go away after a while, but this time it was constant. I went to 3 different hospitals hoping I would finally get some help or answers, but all I got was myself in debt. I just couldn't keep going to the emergency room. It was way too expensive, I was getting calls from debt collectors, and I just wasn't getting any answers or help that I needed. I then ended up at a community health center in my area. The doctor there read my papers from the hospitals and said it sounded like sciatica also. She gave me a steroid injection and prescribed me gabapentin. I thought to myself I'm finally going to get help and get better. She told me I needed an x-ray and MRI of my lumbar but that it wasn't going to be cheap. I already owed so much money in hospital bills and now for this doctors visit that I was stuck. I didn't know what to do.

At this point I was in a wheelchair and could barely stand up. My symptoms had gotten worse and worse. I started calling clinics all around my area but they all went off based on a sliding scale of your income. Since I had no income they would go off my fiances income. He doesn't make much money at all but they were still wanting to charge us a lot just for a visit. I knew there had to be another way to get help. Finally after weeks of calling different clinics a lady at one of the clinics was nice enough to tell me something about a Blue Card. It is county coverage and I would be able to see a doctor and the county would pay for everything for me. I thought. finally! This is it! I'm going to get help! I signed up for the card, got accepted and made an appointment as soon as I could. Man oh man I didn't know the pain it was going to be. Not only was it hard to get an appointment with the health department, but I would have to sit there, in my wheelchair for hours, waiting to see a doctor.  And it was always so packed! The appointment time they would give you was never the time they would see you. I was always having to go as an emergency walk in which is only one day a week. On a scale of 1 to 10 my pain was a 20! It was so bad I can't explain it.

I was at my worse at this point. I have the constant nerve vibrations in both legs, constant nerve twitching that would go from leg to leg, my arms, and even my eye. My right hand was constantly shaking and I had no control of it. My legs were so weak and my spine was so curved it hurt just to stand from my wheelchair. The gabapentin was not working, nor were muscle relaxers. At the health department they don't give out pain meds because they get people going there that are addicted and will try to get a hold of some. But I was in so much pain I needed something, anything! Finally after going to health department about 6 times the doctor saw how bad I was. The pain was so severe I was getting fevers, chills, I was sweating constantly, the pain was making my blood pressure and pulse super high. He prescribed me tramadol and sent out a referral for an MRI. Thing is through the health department you have to wait up to a month for the county to approve any referral. At this point I had been in such severe pain for about 6 months that I couldn't wait any longer. Not only that they had told me get out of the wheelchair saying it was just going to make my "sciatica" worse, then prescribed me a cane. Not only that they sent me to a pediatrist. I was just thinking, what?! The problem isn't just with my foot. I thought let me just give it a shot because I had no other options. I had to wait almost a month to see the podiatrist just for him to tell me I had "sciatica", and told me some stretches to do and prescirbed me lidocain ointment. He saw how I was walking crooked and said I had issues with my feet and I needed to learn how to correct that, do my stretches and I should feel better, Then see him again in about 2 months.

I was fed up at this point. I ended up switching health departments thinking a different doctor might give me answers and finally help me. I ended up getting questioned as to why I saw a podiatrist. I told the few people who asked I was sent there because I was told he deals with back issues also. But the people still didn't understand why I was sent to him when clearly my issues were not just feet problems. So I finally switched health departments only to find it more packed and harder to get seen. I saw the doctor at that department and the first time she saw me she took my wheelchair from me and put it in the hallway. Telling me I was way too young to be using that, and that I didn't need it. Even after telling her the pain I was going through, all my symptoms, even seeing how crooked I was standing she would not let me use my wheelchair. That only hurt me more.

She wanted me to get an MRI, but by this time it had been about 7 or 8 months of this horrible pain. So my fiance said he was willing to pay for the MRI out of pocket so I wouldn't have to wait a month for the referral to get approved. So I had my prescription for the MRI and was excited thinking this was going to give me all the answers as to why my body was going through all of this. I got my MRI a few days after that, the results a few days later, and went back to that doctor. She read the results and realized I had a couple of herniated discs, annular tear, and some fluid leaking from one of my discs. She told me she would refer me to an orthopedic doctor but that I was still to not use my wheelchair. I was in so much pain, especially nerve pain and pain from my spine being curved that it was almost impossible to walk just around my house. I didn't think anyone was listening to me. I was so stressed at this point. My depression and anxiety was so severe, and the pain was so bad I just didn't want to live anymore. I had no control of my body.

I waited a month to finally see the orthopedic doctor. I thought yet again, ok this is it. I'm finally going to get answers and help after about 9 months of dealing with all of this. I went to see the orthopedic doctor and left in tears. He took some x-rays at his office, saw my MRI and pretty much told me yes, I have lumbar issues but that it was not the cause of all the pain and symptoms I was having. He said he was going to let my doctor know I probably need physical therapy or to see a Rheumatologist. I was just upset. No one knew what was going on with me, and here he is telling me I might need this or that. That would be another month wait! I left there crying telling my fiance I can't take this anymore. It hurts so bad and no one can help me or tell me what's going on and I'm suffering from this pain. But he would always give me hope and reassure me we were going to figure this out and that I couldn't give up.

So I went again to the health department, thing is they have about 3 different doctors there, so this time I had to see a different doctor. He read what the orthopedic doctor said, and told me he was going to send out a referral to see a Rheumatologist. I waited over a month and never heard anything. I called the health department numerous times to see what was going on, but never got a call back. Finally after a month and a half of waiting I went as a walk in just to find out the county didn't approve of my referral and that I would need further testing. I was so livid! I never got a call or a letter even saying it wasn't approved, and here I was waiting almost 2 months in severe pain for nothing. After that I was done with the health department. I couldn't deal with them. The only good thing I got out of them was seeing my nutritionist, psychiatrist, and weight doctor. I was able to lose about 45 pounds in about 9 months with almost no exercise. Just changing my eating habits and couting calories. And I was able to see a psychiatrist and counselor to help with my depression and anxiety.

My fiance and I decided to give a try to a chiropractor a bit before this point since we heard they could help with sciatica. I was also told I had scoliosis. I found a chiropractor near me and when he saw I was in a wheelchair he was immediately curious and worried. He had taken some x-rays saw my spine was curved, and heard everything I had to say. We came up with a 3 month treatment plan. But it was going to be over $1000. My fiance and mother were bith willing to pay for it in payments, because at this point we were willing to try anything to get me relief and help. In those 3 months I did improve some. My spine was getting straighter, I was able to walk some with just the cane and not the wheelchair. But I was still having lots of pain. I also couldn't do all the exercises and stretches he would reccomend for sciatica, because it would just make my pain and symptoms worse. He told me he honestly thought something else could be wrong, or that a nerve was severly impinged that it didn't want to release.

While under his care I ended up in the hospital again from the pain. I was doing a bit better for a while but the pain came back, and strong. From there they told me to avoid the health department and to go to the place they recommended. At this point my fiance said lets do it. It had been about a year of this pain and suffering that he was willing to make payments even though we didn't have much money. I got an appointment to see a new primary care doctor on my 26th birthday. First day I met him it was such a better experience than the doctors from the health department. This doctor actually listened to everyting I had to say, starting from the fall to when my symptoms got worse. He saw my legs and saw they were pretty red, and that I had bluish lines throughout. He tested my strength, felt my feet, saw my hands shaking, even saw how bad my legs would shake, and even saw the nerve twitching I was having. The same day I met him he told me he thought I had what was called CRPS. I had no idea what that was. He told me about it and I said it sounded very similar to the symptoms I was having. He told me he wasn't 100% but that I should see a neurologist. I had no insurance still at this point so I was limited to what neurologist I could see. I had to go with the cheapest one I could find in my area.

A couple of days later I was in the office of a neurologist thinking once again, ok this is it! I'm finally going to get the proper help and diagnosis. He ended up taking another MRI of my lumbar and told me I had nothing serious but some nerve pinching. He even had a nerve test done to see if I had nerve damage, but i didn't. He prescribed me about 4 different medications and told me to come back in a month. He also gave me a referral for physical therapy.

I started physical therapy a couple weeks after that which was in Oct 2015. Since then I am still in physical therapy. The physical therapy has helped me so much. It has helped improve my flexability and I am able to walk without a cane. But I can only stand for about 10 to 15 mins before the pain gets worse. And I can only walk for about 20to 30 mins before the pain gets worse. It's not much but it's much more than what I was able to do before. I could even move my feet and toes again even though it wasn't much. I started getting really bad migraines from the pain though, and noticed my pain would get more severe during my "woman time". I was also having trouble with my bowels which were new symptoms. All my neurologist did was prescribe me more medication and told me to see him again in a month. He even prescribed me a diet pill telling me if I lose weight the pain would evetually go away. But I had already lost almost 50 pounds. I will admit it took some pressure off my spine and helped a bit with my back pain, but all the other symptoms were still there. I would be ok for a couple of weeks and the pain would come back, and intense.

It is now March 2016 and my neurologist has me on 8 different medications and none have seemed to help. I finally was able to get insurance through my fiance from the marketplace and decided to see my primary doctor again. At this point I wanted pain managment, and I told him just that. He agreed with me and gave me a referral for one.

The first pain management doctor they referred me to was Dr. Ashraf Hanna. I called, asked if they accepted my insurance, got a yes, and was told all the paper work I would need to bring. I saw my neurologist the week before my appointment with Dr. Hanna and told him my primary care doctor reffered me to a pain specialist which I was going to see in a week. He told me no, not to go. That they would just give me opioids and I didn't need to see a pain doctor. I completely ignored that. I have been seeing him for 7 months, taking so many different medications, took 2 MRI's with him, 2 nerve damage tests, seeing a physical therapist for 7 months also(which isn't cheap), and I am still having lots of pain. And all he can tell me is to lose weight. Even my physical therapist said that wasn't going to solve the issue and that by now I should have made more progress and he doesn't know what exactly is going on. But without physical therapy I wouldn't be able to dress myself right now, or walk the little bit I can, or move my feet the bit I can.

I haven't been able to drive a car in about 2 years due to the pain in my legs and feet. Also the numbness and tingling in my feet, and all the medications I'm on. And for months when I was in a wheelchair my mother and fiance would have to put my bottoms on for me and help me shower. I felt, helpless and pretty much disabled. It has been about a year and a half of dealing with the nerve twitches that go from leg to leg, arm to arm, my eye, etc. The constant vibration feeling from my nerves going insane, the numbness, tingling, cold and clammy feet and right hand. The shaking in my right hand. Even the wind hitting my legs would make me get goosbumps and felt so sensitive that my pain would get a bit worse. The leg, feet and body sweating, the bad headaches and pressure in my head, the feverish chills, the not being able to barely stand or walk. Not being able to sit upright for more than 5 mins before the pain would get worse. Not being able to sit without coccyx cushions. I can't even wear sandles. I have to wear athletic sneakers with good cushion and support. Barely able to stand up in the shower for more than 5 to 10 mins(which is more than what I used to, but still.) I haven't been to the movies in about 2 years, I have barely been able to take any photos or do makeup which I used to do daily. I try every so often and even with tramadol I'm in so much pain just taking photos, or sitting and doing my makeup. I still try to do it every so often though because I miss it so much and it makes me feel happy to do it. Even if it's once a month or every 2-3 months.

I used to carry my camera every where with me. Now I can barely get through grocery shopping, or standing in the shower. I have been only able to go shopping for groceries and personal items since this all started. I can't even go to the beach, theme park, regular park, anything, without being in severe pain. Even with tramadol I'm still in lots of pain. Whatever this was has taken over my body and my life, and I wasn't going to listen to my neuroligist and not see this pain doctor.

Today March 25th 2016 I was in the Florida Spine Institute with no hope. I had been let down by so many doctors in the last 2 years, and still didn't have a proper diagnosis. Every one knows their body, and I knew something more was going on with me than just a pinched nerve. But I lost all hope at this point. I was at a point where I thought to myself I seriously would rather kill myself than keep going through this. I had said it many times during these last 2 years with all this pain, but this time I was serious. I had just had enough. I didn't want to live the rest of my life in this horrible pain, this body I have no control of. But my fiance told me i can't give up and that he had a feeling this doctor would help me. I am so glad I listened to my fiance. As we were sitting in the office waiting to see Dr. Hanna we were watching these videos they had recorded. Patients of Dr. Hanna who were saying symptoms they were having that sounded similar to mine. When they said CRPS i knew I had heard of that before, and remembered the first day I met my primary care doctor he had told me he thought I had that. But he had dismissed it since my neurologist said it was a pinched nerve and since I was doing a bit better with physical therapy. He is not a specialist so he couldn't properly diagnose me. So as I'm sitting there with my fiance waiting for Dr. Hanna I tell my fiance, man, I remember my primary telling me that and I swore after reading about it, it sounded like what I had. These patients in this video were also talking about a treatment called IV Ketamine, and how it has helped them reduce their symptoms with CRPS tremendously. As soon as Dr. Hanna came into the room he was super friendly and listened to every single thing I said. All the symptoms, the slip and fall, just everything I have been going through. He couldn't even believe my neuroligist didn't want me to see him, and that all he has done is give prescribe me so many meds.

After hearing everything I had to say he knew immediately what I had. He told me I had CRPS. Complex Regional Pain Syndrom. I told him my primary care doctor had told me he thought it was that the first day I met him, and Dr. Hanna told me he is a smart man because that's exactly what I have. He put this camera over my feet and arms that detected heat and cold in my body, and I could see everything was red and orange except my toes and right fingers. Which is where I have most of my numbess,tingling, cold and clamminess symptoms. He saw my legs and feet and saw I was weak, especially on my right leg, and that i had some discoloration on my legs. I also told him about the sensitivity I get in my legs sometimes just from the wind blowing, or touching. After that he told me this is a rare uncurable illness, but there are treatments to help with the pain. He asked how I got to him and told him I was referred from my primary care office. He told me I was very lucky because there are only 2 doctors where I live who do IV Ketamine treatments for CRPS. Which is one of the best treatments for this illness. He told me he wasn't sure my insurance would cover some of it or none of it, but that it was my lucky day that I saw him, and no matter what he was going to help me. Even if my insurance wont cover it.

Thing is this treatment is not cheap. I will have to do a 10 day course of IV Ketamine for over 4 hours each time. I will also have to do physical therapy during this time, and be under the care of someone for 24-48 hours after each treatment. I will also have to take about 3 or 4 different medications during this treatment, and also get boosters 2 weeks after I finish treatment. And another 2 weeks after that, then once a month for the next 2 months. Then we would see how well the treatment worked and hopefully it will last a long time. There is no cure for CRPS so I could have it for a few years or even the rest of my life. But this is a new treatment that not many doctors do. I am lucky to be only 20 mins from a doctor who does. Also this seems to be the most effective treatment for CRPS so far and he is trying to make the illness and treatment more known.

There are less than 200,000 cases of CRPS a year in the US, and there is no real explanation of how or why it happens. Dr. Hanna explained you can even wake up one day and just get it. I was very sad but happy at the same time when he gave me a diagnosis. I'm happy I finally know what I have, and what has been causing me all this stress, depression, and severe pain. What has been limiting me to almost nothing. Before I can get the IV Ketamine treatment I will also have to get an injection in my back to help a little with the pain before I get the Ketamine treatment. He also told me the IV Ketamine treatment can also cure depression. So it's like killing 2 birds with 1 stone. We aren't sure my insurance will cover this and my fiance and I are certain if they do it wont be much. Leaving us with another bill in the thousands.


I know this is such a long story I have written, but I wanted to share my story and everything I have been going through so anyone who donates knows what exactly is going on with me.
Any amount it doesn't matter how big or small would help so so much. And I would be so thankful for it. This money would be going towards my treatments, medication, and physical therapy with Dr. Hanna. I also wanted to help get the word out about CRPS and what I have been going through these last 2 years in case someone out there reads this and is going through something similar as me and still has not been properly diagnosed. Please don't give up. There is hope. People from all over the world have traveled to Dr. Hanna for this treatment for CRPS.
These last 2 years have been horrible for me and just when I lost all hope and wanted to take my life, Dr. Hanna has given me hope again. For the people that take the time to read this I thank you so much. And for the people who donate money to help me get better I want to say thank you so much. If anyone would like to keep up with my story and see how the treatment goes once I get started please don't hesitate to follow me or even message me. You can find me on Facebook under Arlene Perez. You will see the same photo I have on here. Again thank you so much in advance!