I saw my pain doc and she said I probably have CRPS. It's been almost two years since my injury so she said there is very little hope of nerve blocks working. From what I've read, I agree. Since my injury was in the middle of me, it's affecting me from the pelvis down. My feet are the worst with both the neuropathy and allodynia.

I am not taking opiates because I smoke MMJ, plus when they gave me percocet in the hospital my body became addicted really quickly on a low dose. I do NOT want to go through that again. I am taking an anti-seizure drug, oxcarbazepine (gabapentin made me too stupid) as well as zoloft, wellbutrin, levothyroxine, magnesium, sometimes B12 and D. I see I should add C.

Doc spoke with me yesterday about a pain pump. I know there is a forum here I can ask people specifically about their pumps, but if anybody here has anything to add, please do so. She wants to put in Prialt. I also got a prescrip for PT.

Work is h*ll, and I know I need to take some time off. I have no idea what is going to become of me and my pain. I have been trying to pretend that I can still do things, and suffer because of it. I way overdid it this last weekend and suffered for it. And it's not like I overdid it for a normal person, I just pushed myself more then I should have. My body is just getting worse. I don't know what's going to happen. Thankfully I have my medical lawsuit from all this that will allow me to take some time off and not worry about an income.

I had a lumbar block done at 9yrs 5 mo.s and it worked great for about 3 days. Man did it feel great to walk and not hurt or play and not hurt. I even rough tumbled my dog. I don't know why your dr doesn't think it would work after just 2. But then again each person reacts differently to each treatment. I hope you get the right treatment for you soon. Keep smiling and positive.

Hi Chao and Welcome,

Sorry to hear you have rsd too. I was told after 2 years theres not much else that can be done for rsd except meds and exercise. I never had a pain pump, but maybe it would work for you. I would get more than one opinion though. From neurologists, pm drs and gps. and then weight the pros and cons. PT is very helpful. good luck with your decision and I hope you feel better soon. good luck with your lawsuit too. Just know that because of the physicians code of silence, it's not easy to do. And every detail of your personal life is put on display. I was told by a dr who was also a lawyer that might have had a case with my broken wrist and the way it was set, but after 4 months of grueling interrogatories of every aspect of my personal life, my case over (one week before my deposition.) It felt like it was insult to injury. I was told that the standard of care done to my wrist was acceptable, even though my rsd wrist is crooked, painful and immobile now because of the way it was set. I think a crooked wrist which is locked and may have contributed to rsd is acceptable, that they should change their standard of care. It was alot of stress to go through, though the money to help pay my medical bills would have been nice if it was because of a drs negligence. But once again, very hard to prove. It was my first lawsuit and probably my last. The stress made my rsd flare up really bad. Well, I hope you have better luck than I did. Take care.

The only thing I still have to do with the lawsuit is the mediation hearing, hopefully in just less than a month. I so want this to be over. I've already spilled all my personal details to them. So. much. fun.

Some questions I've been thinking about, and I'm sure I'll add more:

1. How many of you work? Or, how long did you work, go on SSDI, etc? Right now I'm toughing it out, suffering, not letting work know how addled my brain is but I can't keep that up for long. My job is good physically, it's the mental stuff that's the worst.

2. How do you keep warm in Winter? I'm in CA so it's not horrible, but I lived in my Uggs last winter, even sometimes to work, currently I have my space heater on my feet, which is often. My lower legs are often blotchy purple.

3. Did the pain progress over time, or did it plateau? Did the pain just have bad days? Breakthrough pain? I get everybody is different, so maybe those who have it bad in the feet are better to answer.

4. Were there any improvements you had to make in your home? We're hoping to buy a house soonish and I feel like I need a one story, big kitchen that I can put a chair in to sit on while cooking, area where I can get sunshine if it's cold out, and a fireplace. I've seen a lot of people mentioning they got a jet tub for their bathroom.

5. Do you use any mobility devices? Last weekend I overdid it and had to use my husband's arm. I would have used a cane if I had one. Most of the time I just get up, say ow ow ow and hobble along.

6. Is there anything natural I can use/take that I'm not already doing? (magnesium, D, B12, as well as smoking MMJ, I'd die without that, and I need to add C)

7. For somebody sensitive to drugs, what are you taking that works? I'm trying to explore all options that are non-narcotic/opiates. Tramadol was horrible, for example of my sensitivity. Doc suggested Prialt.

8. Is there anything you did for your tremor if you had one? I have one in my right hand that started in July. Doc gave me propranolol, but as my BP is super good, it just made me beyond tired to a point I felt unsafe on it and stopped. The tremor is only bad when I'm worn out and super sore, otherwise it's not bad, but I don't know what it'll do down the road.

9. Is there a site that has info on this for kids? I tried to talk to my 11 year old about this last night and she brushed it off, but she also has mild autism. Throughout the last year or so she's told me she thinks I'm faking it. The tremor was the only thing that really got my husband to realize something was really wrong.

10. Do you hire help around the house? Or do you force yourself to do it to keep active? I would love to get somebody to clean the shower and mop the floors, help dust. I can do the laundry and picking up now (on weekends only usually, as it takes so long to do), but shopping can be hard and I don't trust DH to get the correct items for me. Heck, the only time I ordered from Safeway to be delivered I didn't get the correct items. I'm a little OCD when it comes to kitchen stuff. And with two vegetarians and me with an onion allergy, it's impossible to buy most premade items, I get a few things from TJs.

11. How well are you all sleeping? I had a sleep study done and it showed my pain is keeping me too alert so I'm not sleeping well. I have to sleep in until noon most Saturdays to catch up. A few days I've come home from work, gone to bed and slept all night. I'd guess the pain pump would help this. I don't have issues falling asleep, but it's not real sleep. I know I need good sleep to heal.

Ok whats sleep? Also I can't take any meds right now except a norco every now and then. I usually hurt but when I flare I feel like im going to go through the roof. This disease sucks royal boogers. I have found some sites for kids to explain to them about rsd. I have done the Epsom salt soaks and they help me a lkttle with inflammation. Sorry for bad speling.. its a bad night. No one that doesn't have this truly knows what its like. No I don't have someone coming in to help at my home. I can't afford it. My husband does most and I do what I can. Keep smiling. Your daughter is 11 shes acting like a normal preteen kiddo. Every thing is about them lol. I have dealt with that with cousins and a younger sister. Don't let it get to you. I use a cane when I go out and when I hurt really bad. Otherwise I hobble around. Crimeny now my right knee wants to act up. I have only been treated with a couple meds so far. Elavil and gabapentin. I hope this helps some and thank goodness for spel sheck.

Hi Chaos

It seems wrong to say welcome but, well, welcome.

I still work. I developed CRPS following surgery in December 2012. I returned to work in February but I had about one week off in June for another procedure on my hand. I have told my employer that I am in constant pain in my right arm and have limited mobility in my right hand, wrist and shoulder. My doctor has written a fairly detailed note explaining this. The pain does fluctuate throughout the day. My job is not physical but it is sometimes difficult to concentrate due to the level of pain. I wind up staying later to make up for the time during the day when I simply could not be productive.

This will be my first proper winter so I’m not sure what I’ll do. I recently bought fleece lined ‘wrist warmers’ which I hope I will be able to wear. I’m not sure I will be able to tolerate it. For me, the sensitivity to touch varies but I have noticed that the cold makes it worse. I also sometimes wear a thin glove at work to keep my hand warm (I actually just use my compression glove).

I tried pregabalin but I was unable to focus at work and was just so tired all the time, so I am not taking that. I have tramadol for when I have a bad flare up. However, I cannot work when I have taken that because I am basically a zombie. So, I only take that occasionally. It does help with the pain so in a way I wish I could take it more.

I don’t have any help around the house apart from my husband but it is just the two of us plus our dog so it is manageable between us.

I do not sleep well. I have not slept through the night since December 2012. The pain wakes me up. I go back to sleep but I never really sleep properly. I can’t sleep too late even on the weekends because the pain just won’t let me.

I do my best to keep going with physiotherapy. I find it is most effective when I use a heat pack before I start to get things warmed up. Ideally, I use a heat pack again after I finish. I find heat packs do help a bit with some of the pain.

I hope you are having a better day.

Kim

I also have pain in my hands & arms. Ask your Dr about Lidoderm patches.
They are not brain "messers" & all you do is cut to fit, even on your fingers under your gloves. I use fingerless winter gloves over white ones. Helps me a lot. I've had the Beast for 13 yrs now & it's affecting my brain now. I have essential tremors, double vision to the left side, sharp short headaches on Rt. side. Whole Rt side. Tubes in both ears & worse of all, problems with my voice box. Can't talk most of the time! Sorry to tell you this, but I just had to tell someone who understands. Best of luck, Glassbee

Good Luck with the Mediation hearing. Hope things work out for you.

My rsd had spread to both sides of my body, but hopefully that won't happen to you. Take Care.

Do did give me lidoderm cream and it didn't seem to help a lot, but I keep not putting it on because nobody seems to let me actually stop and put my feet up for long enough (including me, I seem to constant move my feet even if I'm sitting). I'll ask about the patches because then I don't have to keep applying cream.

Does stress increase your tremors? My husband got sick this last week, house was a mess and I had to take him to the ER (he should be fine). My tremor has gotten bad the last couple days.

I really just want to stop working! I do see some of you working, but not improving? Super sucky. Pain is one thing, but the mental stuff is hard to deal with, especially at work.