So frustrated
 

Ugh. I'm so frustrated with this stuff. I just got diagnosed with CRPS in my right ankle and leg 2 weeks ago plus I have an untreated fracture in my left foot. I am 35 and have a 19 month old. My boyfriend can't seem to get it through his head that standing hurts, walking hurts, well everything hurts. But he expects supper when he gets home, leaves everything laying everywhere for me to clean up. At this point I am being treated with low dose hydrocodone, it really doesn't stop the pain. Plus I can't take it while I have my daughter alone. I am constantly being told what I need to be doing with my daughter, as far as going outside or to the park and that just hurts my feelings. There is so much I want and need to do but just can't and I am having a very hard time dealing with it.

Welcome Carolina Rose,

So sorry you had to come find us! I can only imagine how tough this is with such a young child. Mine is 13 so was actually able to help or at least get his own snack when I was on crutches, scooter, walker, etc. The best thing you can do is get that pain under control and start some gentle PT. Don't know what that will look like with the left foot issues. Pool therapy is great on many levels for CRPS. Especially when you can't bear weight. Is there a gym or Y with daycare and a pool near you? At the very least get the limb moving, ankle circles, toes flexing, alphabet, bicycle in the air kind of thing if you are not immobilized. What was your injury?

Nerve pain is poorly addressed by opiates. Neurontin or the old Tricyclics antidepressants like nortriptyline at a low dose are good. Some people do well with topicals. There are lots of good tips on treatments, meds, supplements and therapy on http://www.rsds.org on a video by Dr. Pradeep Chopra that is a good to place to start for info. Some people also do well with a burst of steroids in the beginning to get inflammation down so they can start therapy. I feel for you on the dinner thing, after nearly killing myself on crutches I rented a scooter and later used a walker I could sit on. That whole boiling water no hands thing is pretty tough.

You will make progress. It might be agonizingly slow but it does usually come. I am walking now with no devices. The key is listening to your body and doing things gently, slowly and gradually to rehab but avoid flare. Flare does not help you heal and there is no pushing it with this disorder other than to just test what your limits are. Most people, 80%, do get better over time, ignore the doomsday crap on the Internet that tells you otherwise. There is a lot of it but the real study statistics don't support the worst case scenarios as being the norm. Hang in there and get your stubborn on. CRPS will demand patience and grit from you but you're a Mom, you already have these things. Come here when you need to vent and remember that you are not alone.

Sending Healing Love,
Littlepaw:hug:

Ugh just found your backstory! I don't know what doctor refuses to treat a fracture. Is it calcaneal? Since you have hardware and such in your CRPS ankle I always argue for getting some kind of work up for nerve entrapment. If neuro can't do or ortho won't refer out for nerve conduction study you could go see a Physical Medicine and Rehabilitation doctor. They often do these and some will look at nerves on ultrasound and find constrictions or evidence of swelling that won't show on MRI. You want to be sure there isn't some underlying contributor to the CRPS that needs treatment. It is so frustrating and frightening in the beginning as we all know but you WILL get through this.

Littlepaw

Thanks my injury is from a fall, multiple breaks to the fibula and a shattered ankle. I do lots of range of motion exercises on my ankle, it's a long time habit and I guess nervous tick.
Yes it's a heel fracture, but still over the course of 3 months and 2 orthos there have been no instructions of rest or non weight baring, or even pain management. There was even refusal of pain management for the crps pain for the whole length of that time. My boyfriend finally went to my primary care dr and told him i could barely walk and took the bonescan report to show him just to get me some relief.
I am honestly thinking that it is a combo of depression meds that might have set off a chain reaction. I was on viibryd 40mg and wellbutrin 300mg daily when I started having seizures. After all of the neurologic tests, it was determined that the meds were in fact the cause. They were causing what you might call miss fires in my brain. Sending mixed signals. All of this happened together, the seizures started back in August, the noticeable changes to my leg and ankle the end of october first of november.

Welcome and I am sorry under the circumstance we all have to meet. I agree, having someone so young to look after must be an interesting challenge with CRPS...don't let others dictate how you should be 'playing' with her. I had a professor in college say some comforting words; I was worried that my child wasn't getting a real childhood because of having to play on a cement garden most of the time, he said, but she IS getting a childhood...made sense to me.
Also, when my ankle broke due to CRPS, I had to ask my ortho doc to not put me in a cast. At first he was very firm and ridged with me about being in a soft boot, that I wouldn't heal right because I wouldn't follow the proper directions of when I could actually walk...I told him to give me a chance and I followed his directions and my bone healed...I find it a challenge to both us and the doctors' especially if we don't have a relationship with them yet.
Keep us posted and keep up the fight.

Two levels one is right medical treatment and plenty here can be wayyyyyyyyyyyyyyy more qualified than me. Second is partners understanding, I have whole nerve thing but several years ago I developed a balance condition with 24/7 tinnitus. Wife couldnt understand what tinnitus meant as a condition so I played a sound similar to what I hear thru stereo anf asked her to do her social media thing and turn the sound off if its debilitating she lasted 7 mins saying how do you cope. Your partner needs to understand what your condition means in terms he can understand so if itd like dead leg then pain as it wakes ask him to sit on leg then experience or if you can think of something less painful for him. Unfortunately many peoples empathy often only applies to what they can see, often if unable to see they revert to the buck up attitude,