i think my CRPS is progressing
 

I am 19. I was diagnosed with CRPS when I was 11. I had a broken foot after a martial arts accident. The pain just never went a way and got worse over time.It was finally a PA at the orthopedist that diagnosed it 6 months later. I received physical therapy and it went into remission without medication. The next year it came back with a vengeance. This time I was referred to the pain clinic at the children's hospital. They put me on Neurontin and Elavil. I went off after it seemed to go into remission again. It flared up the next year, too. This time it spread from my right foot up to my knee. I was put back on meds. That summer I had significant mental health issues and was hospitalized for two months. The pain clinic told my mom and I that they wanted my psychiatrist to manage my medication. I went up to 300 mg 3X day and 100mg Elavil (it was my antidepressant as well as pain management). I eventually lowered the dose to 200 mg 2x day. i have not been in complete remission, but at a tolerable pain level. Last weekend I fell and bruised my right shin badly. This triggered a bad flare up. i tried going up to 300 mg of Neurotin 2x day, but with my current mediaction (Luvox, Latuda, Wellbutrin, Clairnex, Advair, Ativan, and Benadryl) It makes me dizzy and I stumble around. Today I surrendered and got crutches. Since my flare up began i've being feeling CRPS type pain in my left ankle. i am about 90% sure it's spread to my ankle. I am thinking of asking my psychiatrist for a prescription for a wheelchair. I'm a sophomore in college. I don't want to limit myself, yet I have to because of the pain. i think a wheelchair would help me go to class without almost passing out because of pain. I think I can learn to live with the pain as long as don't walk farther from my bathroom. Any more it hurts too bad for me to stand. Are there treatment options that would work 8 years post diagnosis? Has a wheelchair helped you?

There are treatments out there worth trying...things that can help even 8 years into this...especially with newer areas of spread that may be more responsive to treatment. I was in a wheelchair for a while and it was awful...after many many months of physical therapy I was able to use a rollator (4 wheeled walker) and that was MUCH better for me. Yes...it hurt to walk...but RSD is known to get worse with immobilization...use it or lose it is very real. Using the walker allowed me to take a lot of weight off my leg...but continue to use it and keep moving. It was the difference between me being on my feet for 10-15 minutes at a time...and being on my feet for hours at a stretch. The rollator has the benefit of also having a seat with you at all time if you need it and a basket under the seat to make it easy to carry things. The 4 wheeled walker also allowed me to walk correctly...so I wasn't damaging other parts of my body like I was with crutches or a cane or hobbling around without anything.

Right now I am currently awaiting insurance approval for DRG stimulation. It is a newer procedure that is FDA approved specifically for CRPS and has (so far) been shown to be much more effective than other SCS treatments (which I honestly was dead set on never getting because of the lack of effectiveness in so many patients). I am very optimistic about this treatment...but because it is so new it has been a big pain with the insurance company. Hoping it's worth waiting on.

Medications have never been very effective for me unfortunately...but heat patches, TENS unit, Lidoderm patches, ultrasound treatments, and change in my diet have all helped some at various points.

I'm so sorry to hear all that you have been through. I'm going through a pretty rough stretch at the moment myself. I hope you are able to find something that helps you. If you feel a wheelchair will give you a better quality of life...then try it out. Mobility aids are just tools and while on the one hand we may be resistant to such an obvious representation of our disability...they can also represent freedom and better quality of life.

Hello and welcome,

I am sorry to read about your fall and flare up. I can understand wondering if treatments will work after 8 years but I agree with Catra that there are other treatments to try. I would also advocate for being sure you let that injury heal and don't give yourself a hard time for your body needing time. The shin is a sensitive area and though it is a decent sized bone it is prone to injury from its function and exposure. A bone bruise will be painful in anyone, even without CRPS. If you didn't consult a doctor it may be worthwhile to make sure all is ok. if you knocked your tibia hard enough you may have something going on there that would benefit from modified weight bearing for a while. Just remember x-rays don't show stress reactions in bones well. A good orthopedist will be able to tell if there is a problem from exam.

Like Catra, I spent time with a variety of devices and they made life much easier and more tolerable until I was able to get off of them. I used an electric scooter at home and a walker on outings. Without them I would've been confined to the couch. It was a fair trade off for the increase in functioning I was able to get from them. If you go ahead, it doesn't have to be permanent.

Take good care of yourself and try to stay hopeful. You've beat this back before. Staying active is beneficial to the degree you can do it. If walking on land is too much now then walking in a pool will keep tendons and ligaments supple. PT as you know can be a game changer. If you get the wheelchair order maybe see about some therapy to go with it.

I hope you feel better soon, :hug:

You're on a lot of medications already. Ask your pharmacist & doctor that they can co-exist peacefully.

There may be other options out there for you. What does your pain management doc say, and propose?

Best of luck to you! I hope you go into remission again.

In my case, I was almost 3 years into it when they first diagnosed me and started to treat it. A lot of orthopedic specialists just had no clue. It was finally my GP who referred me to a neurologist who diagnosed me. By then, sadly, it was too late and it was "embedded" into my limbs so hard I have a disability because of it. This has been my last 21, almost 22 years.

My hands and arms are fine as long as they get treated, but the muscles get supertired fast (like for instance with typing).

I agree with the suggestions from Catra121 and Littlepaw. First of all there are many treatments available for CRPS regardless of the length of time you have had it. You need to find a doctor who knows about all the options and of course you need to coordinate every thing with your psychiatrist and other doctors.

Make sure you have that shin checked like Littlepaw suggested. Once checked, consider physical therapy again and coordinate that with any assistive devices you may need. I agree that sometimes a wheelchair or rollator as Catra121 mentioned may be needed at times to help you meet your life goals. College is important to you now and you should not give up on it. A physical therapist experienced with CRPS can help prevent permanent disability and help you find the right balance between activity and the use of an assistive device.

I used a wheelchair for a while after breaking my foot and then only when endurance, safety, and speed were an issue. The rest of the time I made sure that I exercised and used that foot as much as possible. This injury came after the previous injury that resulted in CRPS. I did have it spread to that area but it has been managed with appropriate exercise and treatment. I also live by the motto "use it or lose it" because if you don't keep it moving you will lose function. Good luck.

:hug: Shay

Hi Arlevy. I am so sorry you have been suffering with rsd. I was diagnosed about six years ago when I fell and broke my right wrist. It has since spread to all of my limbs, stomach and mouth. I started out with PT and nerveblocks and gabapentin, pain meds that my pain management dr prescribes. I take antidepressants and antianxiety meds that my phychiatrist prescribe to help deal with the never ending pain. My rsd has never gone into remission. Hopefully someday it will but for now meds and a cane help me to deal with my pain a little better. Aqua therapy is also helpful if the water temp is warm enough. Hope you find some pain relief soon.

I went to the pain management doctor and he just gave me lidocaine cream, which did nothing. I'm seeing a neurologist now and getting testing done to see if there is anything else wrong with my nervous system. In the meantime I'm up to 400 mg of Neurotin 3 times a day. He wants to switch in Cymbalta for my Wellbutrin as well. I am getting a wheelchair because I can't walk to my classes without wanting to collapse on the sidewalk and start screaming in pain. When I'm home though, I won't use it.

Hi ahlevy -
I agree with the others posting here. I'm sorry you're up against so much and feeling so lousy. I have a few other ideas that have worked for me:
I have found physical therapy to be enormously helpful, additionally I like the book "Why are my nerves so sensitive" by Adriaan Louw - explains how to re-map your brain to manage pain from CRPS (using a technique called graded motor imagery). Since our brains create pain they also can be taught to experience things in no pain situations to decrease pain. Also, the iPad app or book called "protectometer" and iPhone app called "recognize" (I use the foot one) by the noigroup. Their website is also full of good info, As are 2 scientists Butler and Moseley who have done a lot of research on pain and neuroplasticity and on how talking, thinking, speaking about pain can change the brains perception of it. (Over 20 years of research on pain science)
None of these is a "quick fix" but it's helped me a whole lot and I hope it will help you too.🦋

Sorry the lidocaine cream didn't work for you. It didn't help me either, but at least your doctor tried. Let's hope for the best with the Neurontin and possibly Cymbalta. I think that most of us have gone through trials of a variety of medications to find something that works.

The wheelchair should help you deal with your classes and as I mentioned previously you still have to keep moving, so make sure you don't give in to the temptation at home to start using it. I personally know how tempting that can be. Stay strong. Hope you feel some improvement soon.

I think mine is progressing too. Moving to the other foot. Have an appointment tomorrow and will talk with my doc. So scary to think of it in both feet.

I take Cymbalta and find it does help with the pain. The Neurontin helps a lot, and you have plenty of room there to go up a great deal on the dosage if you and your doctor feel you need it. I hate all the trial and error with meds, and changing things out with them, etc.

I've tried out the iphone app recognize some, this is a good reminder for me to keep using it.