I am a 27 year old female. I was recently diagnosed with CRPS but am unsure about it. Not necessarily because I am in denial. I am afraid of a misdiagnoses...ah well...

I did not hurt myself at any point. No falls, no anything. It was something that just happened.

I have had pain in my left hip/knee/back of knee/leg/ankle/heel/foot/toes coming and going for 1.5 years. It started in my hip. Pretty sure it started yeeeeaaaars ago as a mild uncomfortable feeling deep in the front part of my hip (near groin). Chalked it up to my needing to stretch. Then over the course of 2013, that mild uncomfortable feeling started to get worse. At the time, I had a personal trainer, was on my feet at least half the day to all day and moderately active. That same area of my hip turned into a restriction of flexibility (from pain) when I would lift my left leg from my hip, bent at the knee and tried to bring in my leg close to the body. I could only pull my leg in so far before I felt a sharp pain. Eventually, I had an uncomfortable feeling in my hip, stretched and felt a popping sensation and relief. Same sensation part way through the same day, repeated stretching, felt popping again only to have half of the relief. Again, the accumulation of that uncomfortable feeling in my hip. Stretched it but no popping sensation nor relief. Over the course of 2.5 days, I ended up not being able to walk due to sudden weakness and pain. The ambulance took me to the emergency and was admitted into the hospital due to concern of infection. I had a low grade fever, mildly high white blood cell count, mild inflammation and fluid in both hip joints but significantly more in my left hip rather than the right. The Dr.s found no infection. In fact, they found nothing. The only thing that I ever have (consistently) tested back positive for is the ANA blood test and that is always barely above normal. I have had numerous blood tests, MRI's, X-Rays and a couple of cat scans (sp?) and everything always looks great.

Spent couple of months bed ridden due to instant weakness of my leg. I could only pull my leg forward by inching my toes forward. Finally I went to a low cost/free hospital/clinic to get help because I had no insurance. It took months to receive the help I needed and by then, I was already starting to feel better.
Physical therapy got me to walking again but remember feeling a weird feeling in my knee but ignored it. I remember mild inflammation in foot and ankle but it was so mild and would come and go that I figured it was irritation from my leg and not having walked on it for months and months. The pain in my hip had nearly gone away but not quite.

All of a sudden it comes back and I rest in bed for 2 weeks. Felt like I might have done too much and agitated whatever the issue was. So, I called the orthopedist I originally had seen and went back for help a few weeks later Althoug, randomly (after 2 weeks), the pain let off. Enough that I could walk again. The pain never went away and was still mild but a little worse than the first time I was walking. By the time I saw the Dr. (weeks later), I was already feeling better but she ordered me more P.T. but that was something I had to wait a month and a half for.
Other than this, I had no pain or irritation anywhere else in my left leg.
Out of no where (for no reason) the pain gets worse again but this time (for the first time), it wasn't just my hip. It was all over my hip in certain places...It was my knee/foot/leg/ankle/heel/toes. This happened with 1 week left of my P.T.

The severity of my symptoms comes and goes but never fully goes away. The pain in my hip is just pain. Sometimes I have mild tenderness but most of the time it is just pain.
My thigh mildly aches and can be tender (not to the touch) but I think this could be due to radiating pain.
My kneecaps are much looser than they should be. They always have been. Underneath my left kneecap, I always feel tenderness, it is always sore but severity comes and goes. Sensitive but not necessarily always painful. Sometimes I get mild swelling, mild heat with mild burning sensation and mild redness. Sometimes I have mild nerve pain in the back of my leg (same area of leg where my kneecap is). Sometimes I don't but I always have tender pain in this area upon bending leg at the knee.
My calf is always tender and becomes more tender going down the calf. It doesn't hurt when poked but I am more sensitive to touch the more I get poked down my calf. Discoloration (pink, dark red) upon standing or sitting but goes away when sitting with legs straight out in front of me or upon elevation.
Sometimes my heel gets mildly swollen, red, warm and the skin looks shiny. Can be sensitive when I press on it. While sleeping (when it is acting up) I lift my leg up while sleeping (due to being uncomfortle) and I get this sharp intense pain that builds for a few seconds, hits its peak and goes down quickly and then I will be fine for hours. If acting up, may not happen while sleeping at all but could happen 1-4 times a night.
My ankle is always sore and is tender. It doesn't hurt to the touch but is slightly more sensitive than my right ankle. It is definitely tender when I press on it. This also applies to the rest of my foot and toes. Sensitivity gets worse going along my foot towards my toes and my toes are the most sensitive. All of my ankle/foot/toes are always swollen but severity comes and goes. Never is my skin shiny. Sometimes my ankle/foot/toes are warm or hot and sometimes it is colder than my other foot. I do get discoloration in my ankle/foot/toes, upon standing or sitting. Mostly red but can be purplish red, as well (sometimes blotchy). The color goes back to normal as soon as I extend my leg up or elevate it.
Also get occasional painless and mild twitches in my toes and foot.

If I try to stand on my left leg, I feel lots of pressure and tingling with tenderness and pain. It doesn't feel like nerve pain, though.

I do get stiffness in my entire leg that is worse in the morning and gets better throughout the day. The severity of it comes and goes. Always have some sort of stiffness in ankle and toes.

Alongside of this, I have had upper body chronic pain since I was 19. It has gotten significantly better throughout the years. The pain I feel is nothing like my left hip/leg.
This pain in my upper body is accumulative. My upper body always feels exhausted. The best way that I can describe it is that feeling one gets when they hold their arm out for a very long time while hold something in their hand that has mass. They keep holding their hand out and over time, their arm will feel more and more exhausted. Then there is a mild sore, achey, tender feeling that slowly comes on and intensifies. This is how my upper body feels. Although, it doesn't really bother me much any more. I have gotten used to the pain. It is more of an annoyance than something that I pay much mind to in the way of pain.

No, I take no pain medication but the occasional 2-4 pills of over the counter Naproxin for inflammation (not pain). I cannot afford anything hindering my mental capability as a STEM major. I also use icy hot patches on my ankle and knee when inflammation gets bad and I have to go to school and/or stay out studying.

Also, don't know if it holds any relevancy but there is a high chance that I could have Ehlers Danlos syndrome. I just can't afford to go see a geneticist and ask to be tested for it.

As far as emotions and mentality goes.... I don't let my pain get me down too much. Occasionally I may feel a short moment of sadness over the loss of doing all of the things I once loved to do such as hiking among other activities but the pain isn't what gets to me. I have lived with pain long enough that I don't want to let it hold me down.
I used to be very emotionally and mentally unhealthy but have worked on this for 5 years now and am no longer the person I used to be. I am much happier and try to get on with my life as well as I possibly can. Maybe I owe this to the fact that I am (always have been) a strong willed and stubborn human being. I refuse to be feel a prisoner (or victim) to my body. I refuse defeat. I don't care if I never get better but I will never stop trying to get and be better. I am neither negative nor positive of my situation. I refuse to have blind optimism but I also refuse to ever lose hope and see my condition as something that will never go away. I am a fighter, so only time will tell. I will either get better or I won't. Either way, I won't let this bring me down. I will live the best life I possibly can and be happy.

Anyway, I am very sorry for the extremely long post and am appreciative of anyone who actually reads all of it. My main point of sharing this was out of wonder. Does this sound like CRPS to you and does anyone have a similar story of there own?
Thanks for taking the time to read all of this.
Best wishes

Welcome InkedPaint,

I am sorry you had to join us but you will find good companionship and compassion here. It sounds like you have gotten to a good place mentally. Stubbornness is a virtue when it comes to chronic conditions. Forgive me for a somewhat brief response but I just had a short ketamine infusion this morning and I feel a nap coming on.

It is impossible for anyone to say whether what you have is CRPS. Half the time the doctors can't agree unless it is florid. What strikes me about your situation is that so much from the beginning and even now sounds likes some sort of musculoskeletal impingement could have set this off. The hip popping and stretching at night to get relief all sounds positional. There is a lot in that area that can get gummed up and inflamed and the major nerves of the leg run through the front and back side of the hip. Have you ever gone to a chiropractor? I am a fan of ones who are certified in ART, Active Release Therapy which is a soft tissue modality in addition to the usual bone and joint work. These guys know lots of physio-dynamic tests for impingement and may find something regular medicine wasn't looking for. Physical Medicine and Rehabilitation doctors may also have some different leads on potential problems.

Sure this could be CRPS but you have be sure that any underlying condition causing or contributing to it gets run down and treated if at all possible. It seems unlikely that it was truly spontaneous since you had that hip issue. If you can get that figured out and treated maybe you will get some relief. I have had weird maladjustments in my spine and hip areas from workout issues, an ice skating fall, etc. that set off some intense weird leg issues that were really painful until things got back into place.

Okay that wasn't so brief after all. anyway....Keep looking for answers and as you already know never give up hope for healing and never give up the fight!

Sending Healing Love, Littlepaw

Thank you for the response.
What concerns me is that the pain in my hip is different from the pain in my knee down to my toes. Which is another reason why I am afraid it may not be CRPS but maybe it is....I did some exercises yesterday and the pain in my hip is more agitated than the pain anywhere else in my leg. I get scared about doing too much and not doing enough activity. Ah, well...