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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)

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Old 08-10-2017, 09:31 PM   #1
Becca71
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My primary diagnosed Fibro in me this week. I've been having symptoms for almost a year, if not more. Been mentioning to my pain doc, but he never seemed interested, other than to possibly blame on my B6 insufficiency. But my B6 has been at normal levels for over 6 months. My doc says any issues it had caused should be better by now.

And since all my labs are normal, and it is a diagnosis of exclusion... Sigh. And I did do some research of my own after (yeah, Dr. Google) and the dx fits. The several "online survey" type things all said "you should talk with your dr." type thing. Or said "you meet the criteria" or whatever.

Anyway. At least I have an explanation for the bouts of flu-like symptoms every week or three. And the fatigue beyond fatigue. Etc. I no longer feel like Maybe I'm just the laziest person ever... or suddenly have developed very sensitive bones?
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Old 08-11-2017, 05:11 AM   #2
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Originally Posted by Becca71 View Post
My primary diagnosed Fibro in me this week. I've been having symptoms for almost a year, if not more. Been mentioning to my pain doc, but he never seemed interested, other than to possibly blame on my B6 insufficiency. But my B6 has been at normal levels for over 6 months. My doc says any issues it had caused should be better by now.

And since all my labs are normal, and it is a diagnosis of exclusion... Sigh. And I did do some research of my own after (yeah, Dr. Google) and the dx fits. The several "online survey" type things all said "you should talk with your dr." type thing. Or said "you meet the criteria" or whatever.

Anyway. At least I have an explanation for the bouts of flu-like symptoms every week or three. And the fatigue beyond fatigue. Etc. I no longer feel like Maybe I'm just the laziest person ever... or suddenly have developed very sensitive bones?
At least you got diagnosed properly, and that is something with Fibro!

What can they all do to make it not so bad?
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Work related (car) accident September 21, 1995, consequences:
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- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 08-11-2017, 08:54 PM   #3
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Fibro treatment is just symptom alleviation and of course Lyrica (you've all seen the ads right?). I don't tolerate Lyrica, tried it for the CRPS, and I just got off Gabapentin because of weight gain. I'm sure the other anti-epiliptic works the same on the nervous system.
Exercise.
They don't know what/why it is. Could be overactive nervous system. Yada yada.
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Old 08-12-2017, 07:39 AM   #4
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Fibro treatment is just symptom alleviation and of course Lyrica (you've all seen the ads right?). I don't tolerate Lyrica, tried it for the CRPS, and I just got off Gabapentin because of weight gain. I'm sure the other anti-epiliptic works the same on the nervous system.
Exercise.
They don't know what/why it is. Could be overactive nervous system. Yada yada.
There are no ads for medication in this country, only OTC ones.

I am on Neurontin and it has improved my nerve pain *enormously*; of course I have pain patches for the rest of the pain. Until I feel a very *dull* muscle ache. That's where I'm at, basically.
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Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 08-13-2017, 10:20 AM   #5
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Hi Becca,

There is absolutely treatment for fibro beyond lyrica and the like. Stanford University has done studies on LDN for fibro and had good results.

Low Dose Naltrexone for Fibromyalgia | Systems Neuroscience and Pain Lab | Stanford Medicine

Some antidepressants such as Savella are also used for fibro pain.

While these new meds may not cure the problem the LDN certainly addresses the neuro-inflammation.

One of the number one recommendations for fibro is getting exercise. Anything gentle, like the pool which your foot could tolerate is great.

Keep up the fight. It is good you have new information and can pursue new ways of addressing your fatigue.

Sending hugs,
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