Hi, I'm Blake. I joined this forum after finding it 9 months into my journey. Here's my journey if anyone's interested:
High school
I played on the tennis team in high school. I very much enjoyed it my first and second year of high school. I had made varsity my freshman year! Sophmore year comes, and everything is going great. Good grades, good friends, good tennis. In tennis, we would have weight lifting three times a week. I had been doing fine, until this one day occurred. I was lifting a little to much weight, and something in my mid-right back snapped. It felt like my insides had ruptured, or a ligament had exploded right then and there. I could not walk for around one week, and then I was able to walk. The pain at first, was unbearable.

Doctors
For several months, we went to several doctors who did every test in the book. All the tests came with standard results; Torn ligament in back, disintegrating discs, and answers like " It will heal soon, just give it time, and rest ". After all of the doctors appointments, I was given many medicines like tramadol, gabapentin, etc. These medicines were NOT helping. As we switched doctors day by day, my pain was getting worse. I could not deal anymore. Nurses office every day, dealing with hell in school, and the worst part; No one understands. No one understands anything about your pain. Even I did not understand what was going on with me.
The injury SHOULD'VE healed! I thought to myself, it's getting worse, I have cancer. I actually did think I had cancer, even after all of the tests were done on me, and still to this day I think I have an underlying medical condition that's making my pain even worse; (Because of the intensity of the pain). To carry on, after school ended, and I had already dealt with spinal blocks, them putting a huge needle in my back whilst I was asleep, and the constant pain and no understanding of others OR doctors OR myself (I didn't understand what was going on with me, again the thoughts of cancer) OR if I was going to die or not.

Not to mention, having to explain to all of my friends (which didn't understand anything that I was trying to explain, because I didn't know what was wrong with me either) that I had this TERRIBLE back pain, from an injury in tennis. I got sarcastic answers like, he's faking it, or, I'm so sorry, but I really don't know why you're in so much pain right now, you should be healed, that was 5 months ago. After school ended, we decided to do online school for the next year, because I could not deal with this pain anymore. Every single doctor told me the same answer in different versions, like its growing pains, or it'll heal soon enough. 8 months into my journey, we found a doctor that had dealt with patients like me.

Pain but no explanation. She told me that I had crps, and what's so different about me, is that my skin is not sensitive like most on this forum. It is the deepest pain in the world. Even if you were to hit my back as hard as you can in this spot, I wouldn't feel it. She gave me alittle pain medicine to get through the week as my next stop was Baylor.
Baylor
I was referred here. The baylor outpatient/inpatient program deals with CRPS/RSD/any other form of wierd pain/speech disorders/everything imaginable. I had to take a series of tests, and they accepted me. I was to go there at 8 am for my first appointment. (typing this is making my pain a little better at the moment, I don't know why ) Random thought I'm having right now: No one understands the pain.
Carrying on, 9 months into my journey I had finally started the hardest program of my life. I had been bed rested for the summer before coming here. The main goal of the program is to reprogram your brain into thinking, you can do things, even if there painful. I did a series of super hard physical exercises, that I'd never done before. Tennis conditioning is hard, but this was the hardest thing I had ever done.
WASP STING TERROR (OMG)
Three months before baylor, I walked out of my house into the garage. I was immediately hit with a swarm of nests (or so I thought), but we checked for bites after, and there was nothing. Let me describe the situation. I was walking out briefly to get into the car. It felt like a swarm of wasps attacked me. I immediately fell to the ground and started screaming. My mom took me inside, where we put a fan to blow on me. The fan seemed to help. This was a good thing, as these would happen a lot more often then I expected. Think of it like this, a whole wasp nest attacking you if you ever get anxious or hot. It was a living hell.

Imagine what it's like having your crps/rsd AND a swarm of wasps stinging you for part of the day. HELL. This happened for three months, and made my experience WAY more awful.
Carrying on with the Baylor story
Baylor program for me : 2.5 hours of PT OT and neuropsych. PT and OT consisted of exercises that would trigger the wasp attack, and triggering my worst pain. (Worst pain being like, you know how you're always in pain, obviously with this disease, but when that never ending pain gets worse, as worse as it can get, the pain that makes you depressed, etc) Anyway, the program was designed to trigger it so much, that it'd go away. The only thing I learned from this four weeks was how to think positively, and be proactive vs the pain, not lay on the couch in agony all day.

The only thing positive I got out of it, was I started swimming, which really helps me and I do enjoy it. (Note that I forgot that whilst I was here the pain spread to my knees, happily we worked through it and my knees are better now)
Conclusion:
Right now I am still in the pain I was in when I started. Thought: O wait, I should probably describe my pain alittle more. Basically, in my mid right back there is an area the size of the bottom of a baseball bat. The bottom of the baseball bat then inserts itself into my skin 24/7, and never leaves. It begins motioning in a out, like a dove flapping its wings. Imagine in your head a dove that never stops flying. (Hopefully I'm making sense, lol what am I saying). But anyway, as the baseball bat is inserting itself inside me(Please note, I have no choice, this baseball bat does whatever it likes to me, its like an abusive relationship x 100000000000000 lol), it spins around in my ligaments, and then exits whilst im sleeping. (sleep helps alot, the position of laying down is the only position that relives it some what;sorry forgot to note this lol)
Anyway I hope that you all read my story and can relate/get some relief somehow in reading this. I know what you're going through.
Take care, Blake
PS: CRPS SUCKS
PSS: WE CAN FIGHT THE BATTLE AND WIN IT
PSSS: DONT DOUBT YOURSELF, EVEN IF YOU DO, TURN THAT DOUBT INTO ANGER AND TURN THAT ANGER INTO BEATING IT
PSSSS: Please comment as it's very wierd to me how 99.9% of people here are adults(at least the ones that ive read) and 99.9% of people are sensitive on there skin,(AND THERE SKIN SENSITIVITY IS A MAJOR PROBLEM) im the complete opposite, maybe we can debug this like mythbusters!

Blake

I'm so sorry you are going through this. There are people here who are far more experienced than I am and they will be able give you more advice. But I wanted to let you know that I do not experience constant skin sensitivity. I only experience that occasionally, primarily when I am at work and have done too much typing and/or mouse clicking and I only get it on my right wrist - the area of the precipitating injury.

I should probably explain that I developed CRPS following surgery to repair torn cartilage in my right wrist nearly one year ago. The CRPS has spread to my entire right arm now and up my neck a wee bit.

I hope that you will be able to feel comfortable on this forum, despite the fact that most of us are older. There are so many wonderful people here and I find it comforting just to read some of the posts, even if I have nothing to add, and to know that there are other people out there who understand.

I’m not sure if you saw this but in one of the threads recently an episode of Inside Edition about CRPS was mentioned. The piece featured the journalists teenage son who has CRPS. You might find it interesting and helpful to watch.

Links:

http://www.insideedition.com/videos/...ition-reporter

http://www.insideedition.com/videos/...crps-condition


Take care.

Kim

Hi Blake and welcome to the boards! Sorry you have to be here at all, but if you have CRPS, this is the place to get a lot of support....we are good listeners

Your pain and symptoms sound horrible, I'm sorry you've got such a lot of these awful pains so frequently. I got CRPS in my left knee after a minor op, and it's since spread to my whole left side, my right foot, and now my right hand (latest fun site ). Like Kim, I don't get the hypersensitivity all the time, more often when the red burning pain flares up, or if I'm cold or tired or I've overdone things....more often than I'd like!

I think there's more adults here simply because I suppose we know that such sites as this exist and have looked for them. Maybe younger folk just don't realise we are here? Doctors never seem to point patients in the direction of this kind of support...

I'm glad you finally found a doctor knowledgeable about this disease, and have got some pain meds, even if they don't do as much as you'd hope. I've found that there's actually very little that really helps the pain, apart from being as active as you can bear (best to build back up gradually though), finding things to help you relax, looking after your body and mind by doing gentle exercises and massage if you can, and even meditation - I swear by this now, but I was such a massive sceptic at first!! Relaxing is what eases some of my pain to a point below what I can achieve with painkillers. I'm not good with meds and have a sensitive stomach, I've tried quite a few and they either messed with my system or didn't give me any relief. That's just me though, I hope your pain doc works hard to try to find a combination of meds that work for you.

There are a few things which you may already know about, but I'll list them anyway lol
- Don't use ice anywhere on your body. Ice is very bad for CRPS. If you have swelling and/or heat, elevate the limb above your heart if you can, and remove anything that's irritating your skin. I always layer my clothes now, because my body temp can vary quickly and I just remove layers as I need to (or wrap up like a polar bear )
- try using unperfumed Epsom salts, either a few tablespoons in a warm bath, or wrapped in a damp cloth and put on your skin when it's hot and burning. It has a lot of magnesium, which our bodies need for lots of important stuff, and lots of folk don't get enough. It's absorbed well through the skin. You might not notice a big difference immediately, but over time it does help to calm things. You can also buy it as a paste which is quite good.
- be really clear with any medical folk you see about what you can tolerate and what you can't. Don't be afraid to ask them not to touch your skin without asking, or which arm to use for blood tests or a BP cuff. Stuff like that makes a big difference to pain levels and anxiety when we are worried about procedures etc.
- try the meditation thing honestly, it does help. Try iTunes or online for them. I use Mindfulness ones, especially the Body Scan. Getting rid of some stress is so good for your body and your mind too.

I really hope you can get some relief soon from the worst of your pain. My pain was at its worst (in terms of intensity and how much it stopped me doing things) in the first year-18 months. I was in a wheelchair for quite a while, but am finally out after lots of exercises and just finding ways to cope better. I'm hoping to stay out for a long time....

Stay positive and keep posting. Finding things that distract you and take your mind off things (even a tiny bit) really help. You can still do so many things, and it's important to keep pushing forward and not let it stop you having a life. I used to play a lot of tennis myself, and i know how crappy it feels when something you love is just snatched away by this monster I recently found that table tennis suits me really well - no running or big movements lol, but still the strategy of tennis and the topspin, drop shots and smashes I used to be not too shabby at!! Just on a smaller scale....but it gets my heart going (good cardio) and my blood circulating more, and makes me smile and get that little rush of endorphins. Excellent pain killers and the more ten minute bursts I do, the more tolerant my leg is becoming of it. Result.

Good luck in everything you are doing, and I hope those pains ease soon.

Bram.

Hi kim, hi bramble. It's nice to get some replies, and it's nice to know how you deal with your pain, bramble, and how you are experiencing almost the same thing as me.
Thanks for the helpful tips, it's nice to know that you don't have so much of the skin irritation either. Was wierd to me that I was different.
It's wierd to me that no ones found a "cure".
I think this forum alone with all of it's knowledge could get close to finding a cure for this.
Also I came across this in another thread that this was a lifesaver for someone and it "cured" them. Not sure if true, but I'm definately going to look into it and maybe try it.
BUPRENORPHINE is the drug that "cured" them.
Anyway, thanks for the positivity, and I hope your not suffering as much as I am.

Bram I just noticed, you have patela problems? I dislocated my patela before this started!
We're already getting closer to a cure

Lol Blake! I wish it was as simple as that! Unfortunately, you can get CRPS just from spraining your ankle or cutting your finger, so it's unlikely to be patella related... However, saying that, my PFArthritis had been flaring for a while, and maybe doing the op and cutting the nerve while all those inflammatory markers were active in my blood had something to do with it? Maybe it is the combination of injury plus inflammatory markers that can set CRPS off? Who knows... Unfortunately, the great minds of science (well the ones who have bothered looking at CRPS at all) have yet to find any common circumstances leading to CRPS, nor any ideas for a cure.

There are sometimes so-called cures announced, but not one has ever worked for everyone of us, or even the majority of patients. With this disease, it seems to be about working out something for each individual....and crossing your fingers Some get lucky and find an approach that works well for them, others sadly don't. I think a good medical team is worth gold, but even then it is in the hands of fate as even the best experts haven't found a solution for some.

Two mantras for CRPS: 'Use it or lose it' and 'We all must do the best we can'.

Hope tomorrow is a better day for you

Bram.

Hi bram, thanks for the reply. It is interesting some of the similarities we share, and it COULD lead to a cure in the long run .
Anyway, I hope your day is going well, and your pain is manageable.

Hi Blake,
Hang in there. My daughter is 14 and has had this for 2 years. I know what you mean about your friends not understanding it. It's just so outside the realm of experience of a typical teenager, they cannot even begin to fathom it. I know that this illness is lonely for everyone, but I think being a teen is just an extra burden, when your friends are so central to your life and they just don't get it.

My daughter had a similar experience with a multi-week pain rehab program. Things got worse at first, but now, 2 years later, her pain is just starting to go down a bit. None of the medicines helped her, but I think not giving up and staying active has. Good luck!

BraveGirl's mom

Hi Blake and Welcome.
I'm sorry you have rsd. I've had it for almost three years now and it's spread from from my right wrist to my entire right side and both feet. I also got fibromyalgia a few years after the rsd. I initally had both burning, sensitivity and a deep aching pain. Then after about a year it turned into more of a constant internal deep aching electrical pain throughout my whole body. I do have burning on occasion in both my feet. I take meds and try to walk a little each day and hope to do water aerobics for arthritic people next year again. I see a neurologist, pain management dr and psychiatrist for pain, depression and anxiety. It helps to have a good group of drs who understand rsd.
It also helps to have a good group of friends who are going through what you are. This is a great group of people who understand and I've learned alot from them. I hope you know that you're not alone and that if you ever need a friend or someone to talk to, I'm here to listen. The other people on this forum are also here to listen too, as well as providing support and kindness. Take care and try to take it a day at a time. Don't loose hope of going into remission. My thoughts an prayers are with you. Take care.
From your friend, Renee.

Hello brave girl and renee. I am so sorry that your daughter has this condition, brave girl. I know that I'm one to deal with these things decently well, even though on the inside I'm screaming at the top of my lungs. I understand where you're coming from as a mom, because my mom doesn't deal with me very well because of how high-maitenance I am. It's not that she doesn't care, it's that she doesn't know what to do when I'm at my worst. I wish you best of luck with your daughter, and I'm glad her pain level has decreased a bit. I will pray for her. Renee, thanks for the response. Again, it's nice to know that there are others going through this. I really thank you for support, and if you ever need someone to talk to about your pain, or need help with anything, I have a lot of experience and could probably resolve your problem. Just post on this forum and I'll respond with a caring answer .