Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 09-01-2015, 04:28 PM #11
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Yeah for the new doctor. I am so glad you exercised your right to choose a better provider. I think your plan is a sound one. If after the PT you still have a lot of "ick" where that burning sensation was, you might consider a local block with steroid before going for the spinal nerve blocks. Sometimes peripheral treatment does the trick.
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Old 09-03-2015, 05:11 PM #12
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I started pt yesterday and it was rough but I did it. Today I was very soar so I just laid around. I also am going back to work tomorrow night. So please pray I survive.
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Old 09-20-2015, 07:24 PM #13
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Default 1 month diagnosed CRPS ll

Hello everyone. I am new to all of this and I am so confused about so much and worried about a lot too. I had surgery on June 24 so I'm 3 months post op. I started right after surgery with nerve pain. My ortho and 2 pm Drs have diagnosed me. My symptoms are burning pain in foot with discoloration and temperature different from opposite foot. I also have pain when walking so I use a knee scooter for walking long distances. The burning pain is not constant but it does happen a lot. This past week I started feeling the pins and needles going up my leg to my calf. I'm hoping it's not spreading. I do swell a lot especially when I'm moving a lot or on my feet.
I am working now 3 days a week in a light duty position but eventually I have to be able to stand 8 hours a day. I'm worried about getting to this goal. I will see my Drs this week and discuss nerve blocks. I'm already in physical therapy and I am planning on to continue it.
My meds that I'm on for CRPS is gabapantin 300mg 3xs day, morphine sulphate er 2xs a day. Morphine sulfate 15mg ir as needed. I am also on other meds too due to having major depressive disorder and severe anxiety. I also have insomnia. So I take a number of meds every day. I was on Lyrica but after 3 weeks I started to get sores in my mouth so I went to gabapantin which makes me sleepy.
Here are my questions
Do you think I will be able to stand for long periods of time as to return to work?
I have a lot of short term memory is that meds or CRPS? I couldn't remember talking to a friend on the phone. I also had forgotten what my left and right was while driving.
What is the recovery time of the nerve block and any other info on it?
I'm sure I have many more questions but I thank yall in advance.
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Old 09-20-2015, 07:53 PM #14
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Hi Julie,

I think your post might get lost in here with pictures and am thinking you meant for it to go out generally. I let a moderator know that it may need to be moved so you get enough exposure for meaningful answers.

It is very hard not having a timeline of when you will get better, when you will be able to stand, when you will have less pain. My best advice is to take it day by day. You will make progress but it may not be at the rate your doctors or therapists think it should be and certainly won't be at the rate you want it. Which was yesterday right?

Progress does come, sometimes in tiny baby steps. Keep things gentle on your system. If you swell a lot then having a dependent limb that you stand on 8 hours is Not realistic until things get further along and more settled. Definitely Get in the pool if you can, ask for aquatherapy. It is great for reducing swelling and improving circulation.

I am glad to hear you are in PT, that's a great start. Do all you can without flaring overly and keep up the good work! I can't answer the nerve block question directly but from what I know relief is pretty quick from the anesthetic and then another boost sometimes a bit later as the steroid kicks in. I don't know how long recovery is. Short term memory issues are common, especially in the beginning and are part of your brain being overloaded with nervous system activity. Meds can contribute too. Go easy on yourself and try to note if it is worse after any meds in particular.

hang in there Julie, we're rooting for you and hope you find relief soon,
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Old 09-21-2015, 06:17 PM #15
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I would second what little paw said one foot surgery. I have 2 and they have taken me double and triple the time it would take to heal. My first one had screw and staple in second was to take it out. After first I had many of the cross symptoms but turned out I didn't have it just my body's reaction to healing.

Maybe ask for nerve conduct studies emg to check for nerve damage. Good luck in your search for answers.
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Old 09-21-2015, 09:17 PM #16
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They nerve blocks do not take long to get over. Mine varied with each shot, but basically one to three days of being fairly sore at the injection site. I am asssuming from the description of your injury that it will be lumbar sympathetic blocks, the sorness is on the on the same side as the CRPS foot in the lower back. Not a huge deal compared to the CRPS.
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Old 09-22-2015, 04:10 AM #17
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Quote:
Originally Posted by Juliek72 View Post
I am a 43 yr old female. I had surgery for my cuboid bone that was not healing from a stress fracture and it got worst. Surgery 6-24-2015. I am a little over 2 months post op. No pins or screws just smoothed out bone and removed bone fragments broken off from bone. I have been going to ortho for post op every 2-3 weeks. Right after surgery for a while I suffered with a burning sensation if anything touched my foot. That is not as bad. I still can not walk long distances without crutches. Ortho sent me to pain dr on Friday. He diagnosed me CRPS. All he did was look and touch my foot (ouch) and my symptoms are. Numbness especially along outside of right foot, pins and needles when touched or when standing or walking. Swell throughout day and bad at night. Very stiff and sensitive to touch ( not severe like pain when sheets touch). Foot feels cold at times but no discoloration. He is doing a nerve block next week and put me on morphine and Lyrica. Does this all sound like a correct diagnosis of CRPS. To me from what I have read it doesn't. All information is welcomed!!!
Hi Julie,

Like you, my CRPS developed within the context of foot surgery as well. Your case sounds very very familiar to me. If I may, I'd like to encourage you to find a good Physical Therapist. At the early stages, which you are now in with CRPS, if you can hit this disease hard early on, you have a better chance of kicking it into remission. Since there is no cure for CRPS, that is he best any of us can hope for.

Now, here is the kicker, chances are, your Physical Therapist has never heard of CRPS. None of the many that I have worked with over the years knew anything about it prior to my walking into their office. So, they are going to need to be educated. My PT found what she needed to treat me, when I was first diagnosed, so I know the information that they need is out there. So after you find a good Pt, tell her / him to look for information among their sources for knowledge on how to treat CRPS. If they look, they will find it. I know mine did.

Here are some things that might be of help to you.

1. An efficient Pain Management Doctor and a good Physical Therapist
2. Proper Medication to help at least a little bit with the pain.
3. Water therapy
4. Mirror Therapy
4. Flash Cards for retraining the brain with different hand positions for you to identify. (Sounds easy, but is extremely difficult for CRPS patients)
4. Music Therapy
5. Chiropractors are beneficial to some (though it didn't help me)
6. Spinal Cord Stimulator/ and external stimulators
7. Spinal Nerve Blocks
8. And a Good healthy diet (This is essential IMO, since CRPS symptoms are tamed a bit by a leafy vegetable type of diet... Again In My Opinion

And one last thing. IMO-Everyone who has CRPS responds differently to different types of treatments. What works for one, doesn't work for everyone. And please remember, Your best chance of beating CRPS is to hit it early and hit it hard. There is no cure, but remission is possible, and your best chance for it is early on. I wish you well.
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Old 09-22-2015, 04:18 AM #18
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Quote:
Originally Posted by Juliek72 View Post
Hello everyone. I am new to all of this and I am so confused about so much and worried about a lot too. I had surgery on June 24 so I'm 3 months post op. I started right after surgery with nerve pain. My ortho and 2 pm Drs have diagnosed me. My symptoms are burning pain in foot with discoloration and temperature different from opposite foot. I also have pain when walking so I use a knee scooter for walking long distances. The burning pain is not constant but it does happen a lot. This past week I started feeling the pins and needles going up my leg to my calf. I'm hoping it's not spreading. I do swell a lot especially when I'm moving a lot or on my feet.
I am working now 3 days a week in a light duty position but eventually I have to be able to stand 8 hours a day. I'm worried about getting to this goal. I will see my Drs this week and discuss nerve blocks. I'm already in physical therapy and I am planning on to continue it.
My meds that I'm on for CRPS is gabapantin 300mg 3xs day, morphine sulphate er 2xs a day. Morphine sulfate 15mg ir as needed. I am also on other meds too due to having major depressive disorder and severe anxiety. I also have insomnia. So I take a number of meds every day. I was on Lyrica but after 3 weeks I started to get sores in my mouth so I went to gabapantin which makes me sleepy.
Here are my questions
Do you think I will be able to stand for long periods of time as to return to work?
I have a lot of short term memory is that meds or CRPS? I couldn't remember talking to a friend on the phone. I also had forgotten what my left and right was while driving.
What is the recovery time of the nerve block and any other info on it?
I'm sure I have many more questions but I thank yall in advance.
Memory loss is part of this disease, and being on the type of meds that most of us are on does not help either. Since having memory loss like we have is part of the disease and is not normally a part of who we are, it does take some getting used to it. I hate that it is a part of my life, and still struggle to accept it. Standing is tough for CRPS patients, especially if our CRPS is in the lower limbs. Also, this disease zaps energy and endurance. I know, I tire easily. But hopefully your Physical Therapist can help you with your ability to stand. Please let them know of your concern in that area. So hang in there. All of us are in this thing together. That is why this group is so helpful. We all understand our struggles with this disease and provide one another with a safe place to land.
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Old 09-22-2015, 07:14 AM #19
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Julie,

Standing for long periods on my job worsened my symptoms to the point I could barely walk, although at that time I was not diagnosed nor treated for CRPS. Long periods of toughing it out are not beneficial.

What has helped me gain strength to be able to stand for short periods of time is PT and pool walking in a warm pool. The "warm" part is important to success. I found out I freeze up in more than one way if the water is less than 84 degrees. I lost most of yesterday, because I tried to deal with colder water in the morning.

I also know CRPS has made me 10x as anxious as I was before. Even when I am resting/relaxing I am a tight ball of nerves. I swear I can feel myself vibrating.
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Old 09-22-2015, 01:12 PM #20
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Hi Julie,

As all the others have been saying, keep things moving and keep with the PT. Everyone here has been giving great advice and getting into a pool is one of those pieces of advice that I too am seeking out. Foot and ankle surgeries are very difficult to recover from and even harder when dealing with CRPS. My first surgery, no CRPS involved at that time, it took 8 months of PT before I was able to work a full 8 hour shift, and I still found that I had to sit every once in a while. If you want to be able to do it bad enough, than you will be able to do it.

Memory issues can also be a problem with CRPS. Taking morphine can cause memory problems as well. I find that playing simple memory games helps with keeping my mind somewhat sharp. Even things as simple as solitaire can help a little.

Nerve blocks are one of the things that I have been asking others about as well so I can't really tell you much about them. Since you had surgery in June, you may benefit from them.

You mentioned that you were having pins and needles sensation going into your calf, hoping that it wasn't spreading. I wouldn't worry too much about that. CRPS does occasionally do what is know as walking. It doesn't hurt to bring it up with your doctor though, just in case.

Fight hard. Like -Spike- said, Your still early on into this and you still have a good chance of putting this into remission.
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