Health Organization for Pudendal Education

Hi,
I believe I do have cs going on, but I've been told by two doctors that it's myofacial pain, I suppose they overlap. Two PT's have said it's sensitization.
Any ways, what do you experience?

I have prickly, and burning sensations in both of my legs. The pain is always bilateral when it's there. I don't always have it (thank God), but it can come on real quick. My legs are sensitive to cold weather too.
I think of all the various pain sensations I've had with PN, I hate this more than anything. I hate the leg burning. If that starts up, I may as well call it a day.

If you have it, what treatments help you? I find I can't tolerate deep tissue massage from the hips down anymore. I have had massages for the last 25 years of my life, but now it's waist up only.
My PT wants me to use a foam roller on my IT bands etc., nope can't do that.

I may try Lyrica one of these days, perhaps that will keep it in check.

Thank you,
Debbie

Hi Deb.
What are your PT's basing the CNS on?
I think it's possible you may have an actual neuropathic condition causing the symptoms in your legs. Have you ever had an EMG done?
Best regards,
Karyn

Hi Karyn,
Yes, I had a neurologist do an EMG on my left leg early on. It came back completely normal. At that time, I only had the burning in my left upper thigh, eventually it spread over to the other leg. then it began to spread down to both knees. This is just on the front of my thighs, and around the knees usually, but about 2 weeks ago it flared and went down into my lower legs. Again, mostly in the front.
I believe the PTs are basing their info on my symptoms, a wound up central nervous system. Oh and I forgot, and how could I forget, Dr. Hibner said he felt it was central sensitization and that it would probably eventually spread to my feet.
I don't want to believe that, so I'm trying to do meditation, mind quieting etc.
It's probably a little cs and myofacial pain -- I guess cs sounds worse to me.

There are days when it's just a low simmer (as I call it), and I can almost forget about it. Then there are some days, not many, when it's gone, and then again there are the bad days.

What do you think it is? I'm just curious about what other people feel, experience. I found another PN person that gets the prickly feeling I get. I feel that's a pre-burning sensation for me.

Thanks
Debbie

Hi Debbie,

deBBieW wrote:I believe the PTs are basing their info on my symptoms, a wound up central nervous system. Oh and I forgot, and how could I forget, Dr. Hibner said he felt it was central sensitization and that it would probably eventually spread to my feet.

OK. But based on what? Just your symptoms? Well, it certainly is possible. But there is actual diagnostic criteria for confirming CNS, and maybe you've had that testing done?
To me, it sounds like your PT and Dr. Hibner aren't sure why you're experiencing the lower extremity pain/burning and are using CNS wind-up to explain it.
I'm a bit disturbed by Dr. Hibners comment about it eventually spreading to your feet. What did he suggest to get it under control before it progresses to that level? Your PT's suggestion?

deBBieW wrote: I find I can't tolerate deep tissue massage from the hips down anymore.

deBBieW wrote: I have had massages for the last 25 years of my life, but now it's waist up only.

deBBieW wrote:My PT wants me to use a foam roller on my IT bands etc., nope can't do that.

deBBieW wrote:What do you think it is?

I have no idea, Deb. But if you're concerned about CNS, you may want to do some research about it to find out where you may fit in and what kind of testing you need.
The pain and temperature sensitivity I experience in my legs and feet is coming from lumbo-sacral plexus. That may be something you can look into, as well.
Best regards,
Karyn

I have central sensitization from the waist down.

The single most helpful thing for me was to STOP all aggressive approaches (therapy, massage, skin rolling, extreme temperatures...etc).

It took me a while to accept this (as I'm a naturally proactive person) but if you think about it logically, your central nervous system has become hyper sensitive and reactive because of the constant assault of pain, and then you are continuing to assault it with PT...etc...it never gets a chance to calm down.

If you leave it alone (avoid anything that is aggressive or kicks up the pain) and give it time, it has a chance to recover.

I know this is counterintuitive to what a lot of health professionals advise, but I've tried just about everything and my body feels better when it's left alone.

Give it time and maybe it will help you too. I hope so.

Less pain,

Jackie OUCH

Great advice, Jackie-O!

Best,
Karyn

Jackie,
May I ask who diagnosed you with central sensitization? Did you have additional screening tests, EMGs etc.?

thanks
Debbie

I'm having this problem SEVERELY, and cannot take a single med that works by suppressing the CNS. PERIOD. Many of them take my pain down, but it's as if my nervous system fights back and revs up so severely when the drug starts to wear off that I go into some weird reaction. Almost had a seizure due to this at the hospital when given an opiate. I was never like this before. I had a reaction to a sleep med this summer and my whole body went nuts. How do you explain this to your doctors without them thinking you're just inexplicably weird?

Thanks

I have exactly that - leg burning. I'm about to try swimming, as I have heard that it's good for overcoming CS (if that's what it is - maybe it's the pelvic muscles starting to affect sciatic nerves?).

Hi Karyn
Would you mind sharing what the tests or protocol are for CNS? Sounds like you have been screened for it.
I wanted to mention that in addition to Potter's MRI, I've had a sacral MRI to look for tarlov cysts, none found, and I've had a lumbar MRI, some slight bulging, nothing major there either.
I've had abdominal CT scans, and ultrasounds - so what type of tests would I need? Probably something a neurologist would do?
I've just read a really good article, if the source can be trusted, at http://www.instituteforchronicpain.org. This author explains central sensitization very clearly.
Hibner did not suggest anything in particular for the leg burning. He wanted me to come back and get botoxed, have another block. I got home and really thought about that, and didn't want to do either.

Antonia and Anna, I'm sorry you are also stuck with this type of pain. It's sort of like a double whammy - PN pain, and then additional burning as the frosting on the cake!
Anna I did read that mild aerobic exercise can be used to help treat this type of chronic pain, so I hope your swimming helps you.

Thanks,
Debbie