[BioBased]

For the past 3 years I have developed a variety of different, intractable health issues that I have been repeatedly told are not RSD related.

When I saw my PM the other day I brought in a print out from a CRPS power point by a CRPS expert specifically detailing all these problems. Basically, he ignored it all and referred me to a neurologist for my wake-up migraines and told me to go back to the dermatologist for the matching bilateral rashes on my legs. He told me to go back to see the gastroenterologist, too.

I was so down after this, because the prescription he gave me for voltaren gel was denied and I am quite sure I will be rejected for more aqua PT. Why did I bother going?

But it turns out bothering was good, because by following through with the neurologist, this doctor has confirmed these horrid headaches are RSD related, as are all my other symptoms. And this happy outcome exists only because he just finished attending an RSD lecture series. Finally, some serendipity.

[LIT LOVE]

Congrats! I don't suppose you have a link for the CRPS PowerPoint?

[BioBased]

Originally Posted by LIT LOVE

Congrats! I don't suppose you have a link for the CRPS PowerPoint?

https://rsds.org/wp-content/uploads/...Depth-CRPS.pdf

Getson thinks CRPS is fibro, I don't agree, based on my issues and the ones I have seen manifested in my late MIL. What is similar is the lethargy and the trigger points. At the PM meeting I was not prepared for the agonizing pain when the doctor happened to hit one of my trigger points, I let out a piercing shriek. Even when I am not flaring those points are still painful.

[catra121]

It is always a relief to have things validated by a doctor. It doesn't really CHANGE anything...but at least there's an acceptance that comes with knowing and the ability to kind of move forward instead of looking for other causes.

Do you have any other options if aqua PT is denied? Mine ended and rather than continue the PT (there wasn't much more they could offer me beside same old same old and I had the routine down) I joined my local gym that has a heated arthritis pool. It's a lot cheaper than PT and I've been able to continue the routine to keep moving. It's not improving my pain but it's keeping me moving and I feel less out of shape if that makes sense.

[BioBased]

Originally Posted by catra121

It is always a relief to have things validated by a doctor. It doesn't really CHANGE anything...but at least there's an acceptance that comes with knowing and the ability to kind of move forward instead of looking for other causes.

Do you have any other options if aqua PT is denied? Mine ended and rather than continue the PT (there wasn't much more they could offer me beside same old same old and I had the routine down) I joined my local gym that has a heated arthritis pool. It's a lot cheaper than PT and I've been able to continue the routine to keep moving. It's not improving my pain but it's keeping me moving and I feel less out of shape if that makes sense.

Catra, that is awesome that you are able to keep moving, despite the pain. I know what you mean, I had pain in the pool, but it was bearable.

I wish the Y pool was warmer, because right now the only equipment I can use there is the recumbent stationary bike, but at least that has enabled me to keep strength in my legs. On good days I can pedal for 11-12 miles. But it really isn't enough of the right kind of exercise, I still cannot go downstairs normally and I would really like to be able to walk on a beach again, or be able to walk around the block or go camping with my friend. Ha!

[catra121]

Originally Posted by BioBased

Catra, that is awesome that you are able to keep moving, despite the pain. I know what you mean, I had pain in the pool, but it was bearable.

I wish the Y pool was warmer, because right now the only equipment I can use there is the recumbent stationary bike, but at least that has enabled me to keep strength in my legs. On good days I can pedal for 11-12 miles. But it really isn't enough of the right kind of exercise, I still cannot go downstairs normally and I would really like to be able to walk on a beach again, or be able to walk around the block or go camping with my friend. Ha!

The heated pool definitely makes a difference. The pool at PT was heated but not an arthritis pool...and the arthritis pool is like 10 degrees warmer and makes a huge difference. I feel lucky my Y has both pools and the arthritis one has been empty every time I go so there have been no issues with getting splashed or not having enough room. Maybe look into seeing if there are any arthritis pools anywhere near you?

[Becca71]

CRPS is not Fibro, but I've been hearing that many docs believe they are related to each other as both involve overactive nerves. And both respond to some of the same medications.

[RSD ME]

I researched crps and fibro and the difference between the two is that crps shows physical symptoms as well as constant pain and fibro has constant pain but no physical symptoms. I got fibromyalgia two years after being diagnosed with crps. My dr says crps sometimes triggers fibro.

They are both incredibly painful chronic illnesses but I get so upset when people and drs I know try to compare the two and say that they are the same thing. I can tell you that they are two totally different things. I will agree that they both involve the nervous system.

I'm not a doctor but this is what I've read and what I've lived for the past six long years.