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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)

CRPS Recovery Process-What does it look like?

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Unread 12-05-2009, 09:07 AM   #1
Praise God
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Default CRPS Recovery Process-What does it look like?

2 years ago when I was first diagnosed with full body CRPS I remember reading a blog of a woman who had RSD/CRPS in one limb - leg, if I recall correctly.

She detailed what the process of recovery was for her and if my memory serves me correctly she indicate it took about a year to recover. She mentioned she went to physical therapy and did the exercises. She said it was painful but after about 6 months she started to get times of less or no pain (intermittently with pain) and by the end of a year, the pain was pretty much gone.

I learned that this takes time and it involves pain!
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Unread 12-05-2009, 09:23 AM   #2
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Default CRPS Recovery - it is a process

Armed with this information, I went to see an excellent hand PT as my original injury was to my left index finger but I had full body RSD. She was very informative and knowledgeable.

She told me that:

When the nerves get irritated it causes the muscles to tighten up and we get swelling and all the other things that go along with this.

Nerves normally glide in the body (like when you floss your teeth) and when the nerves get irritated, our muscles tighten which don't allow the nerves to glide, then the nerve gets irritated and we end up in this cycle that we are trying to get out of.

Something has to effect change. This is where nerve blocks and medications comes in. They are trying to get the nerves to stop being irritated and get gliding. We are then to move and to hopefully keep the momentum going.

The SG blocks had cause my left arm from my face down (shoulder, elbow & wrist) to swell and tighten up.

I tried PT for about 3 months and it was so painful I stopped. She had massaged the scar on the finger and it had taken the pain to a new higher burning level. I figured the original injury was causing me problems and I probably damaged it when I cut my finger.

The PT encouraged me to keep walking - I was walking about 3 hours per day trying to deal with the pain and anxiety but the pain remained high. By July of that year, I could finally feel some hunger pains.

So then I decided I needed to get the nerve looked at.
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Unread 12-05-2009, 09:41 AM   #3
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Default CRPS - Recovery Process

In Sept 08 the surgeon reconstructed the nerve. It would take about 3-6 months to grow back as nerves grow approximately 1 mm per day. I could expect pain as it grew back.

And I did have increased pain to about an 8 - still full body. I went back to the same hand PT who worked with me. In mid-October I got too aggressive and had 6 tears in which I believe I damaged the nerve again. We also noticed that I now had frozen shoulder because I would not use that hand so we started PT for that as well.

Since I was in pain all the time, it took a few months to see any results. I would do hand exercises and shoulder exercise. It was painful and I cried allot. But after a few months (about 6), I noticed that sometimes the shoulder exercises would not increase the pain and sometimes they would. And probably 3 months later moving the shoulder usually did not give me extra pain.

I also had began walking again after the surgery and the curious thing is I had been walking 3 hours daily before surgery and after surgery I could hardly walk any distance and I walked very slowly. How could this be when I had been walking 3 hours a day at a brisk pace? Over time (many months), I could walk at a quicker pace and for about 45 minutes.

Interestingly enough, the pain went very, very gradually from an 8 in Sept 08 to a 1 in June of 09 (took 9 months). The pain had left my feet, legs, head, arms, back and resided in my hips and would flare up in my chest.

The hand was a different story. I think I had reinjured the nerve. So moving the hand still caused pain. Even with all the therapy, I still was stiff and swollen along the arm, neck & face.

I tried a second surgery in June 09 to see if I could get rid of the last of the pain.
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Unread 12-05-2009, 10:03 AM   #4
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Default CRPS Recovery Process - it takes time

Well, as you can guess, it flared up the CRPS and within a couple of months I was back to full-body pain and it was at a 5 and climbing.

Walking is an issue again.

How can I affect change now?

Ketamine infusions.

I had 2 sets of 3 infusions and the last set reduced the swelling in my face, neck and wrist. All the months of PT was not able to do this. Because this nerve was trapped for 2 years and has now been somewhat freed it is irritate when it moves. The PT tells me this should be expected.

It also knocked my pain down from the 5 to usually a 1 on most days and the pain will be felt in fewer places.

Now I am doing PT in a heated pool.

From what I have gathered from my experience and others who I have spoke with who have recovery, this is a slow process. It takes many months to years to get there. It is very hard to notice the change because the pain goes up and down daily. I kept a diary of what was happening and when I looked back I could say: Hey, the highest the pain has been in the last month is a 4 and then a few months later the highest pain level was a 3 and look it is not in my feet anymore.
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Unread 12-05-2009, 10:56 AM   #5
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Default CRPS Recovery - Thoughts on Rehabilitation

I know, when I started this process, no one could really tell me what recovery looked like (because they tell you there is no recovery). We are used to getting an injury and it taking days to months to heal. CRPS is not that way -it takes way longer and is way more painful.

From my experience, from what I have read and from talking to others who have recovered these are my thoughts/observations on the recovery process:

It takes time - think long term (months to years) - not a quick fix.
It is very hard to see the progress - most people cannot see it because it is so very gradual.
Expect it to be a painful process (CRPS is painful).
There are up and down days as it gets better - not a straight procession forward.
Get good counsel from doctors, psychologists, etc.
And it seems, at some point they start to get moments of no/low pain which eventually get longer and longer.
Think of it like a brain injury - it takes a long time to recover from this.

I could not see my partial recovery very well while I was going through it but I could certainly see it in hindsight! I think most patients have a similar view.

(Dr. K's tip: video tape yourself before you start any program and review the tape once a month and see if you improve).

Dr. K. has videos on his website of patients who have recovered. You can see the process and it is very slow. This has really helped me view this differently. The wonderful thing is that people will continue to heal for years afterwards (regardless of what method they use to get them on the path of rehabilitation).

Another thing I had noticed back in June of 09, I was able to do more than I could in months prior. For example, I could visit with people for 4-6 hours as before it could only last a couple before I could not stand the pain anymore. I could go shopping for about 30 minutes. I could walk 45 minutes. I could go to a movie and sit through it.

That is another way to measure progress. Can you do more now than you could before? Keep a record of it.

Try to get others that are close to you help you notice the improvements. They might say: "hey, I noticed you are smiling more" or "you have complained less about the pain in your feet" or "you have had 2 good days in a row" or "wow, you just watch an hour TV show".

That woman (the judge) who went for ECT for depression. She had 12 sessions and 4 years later she was pain free! They guess the 12 sessions changed the brain and put in on the path to healing.

I hope this helps! If any of you have thoughts on the recovery process, I would love to hear them.

With God, all things are possible!
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AintSoBad (12-05-2009), CZZ74 (12-14-2009), Mslday (12-06-2009), SandyRI (12-06-2009), vannafeelbettr (12-10-2009)
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