Health Organization for Pudendal Education

In reply to Deb, but hopefully others wondering as well:

Central nervous system alteration and it's involvement in chronic pain is new territory for most of the medical community, but they are learning more everyday.

I was diagnosed by several pain management doctors based on my symptoms. One suggested a series of sympathetic nerve blocks. I refused because almost everything I've tried has made me worse. If I had tried every invasive procedure physicians have suggested, I would have had 3 additional surgeries and at least 20 nerve blocks. I don't say this to denigrate physicians. I can get pretty desperate and they're willing to try anything to help. But in the long run, no one knows my pain like me, and I have found it's best to do what I can in moderation (walk) and avoid as many aggravating activities or treatments as possible.

I have also found that mild aerobic activity (walking) is helpful for central nervous system involvement if I wear shock absorbing shoes and walk on a flat surface. Too much and it stirs up the PN, but a little seems to help.

Wishing less pain,

Jackie OUCH

One of the doctors I go to has told me for the last two years that I have CS, and he's been trying to get me to take Cymbalta, which is supposed to reduce CS. And I've been diagnosed with fibro, which is thought to be a CS condition. And I have the hyperalgesia and allodynia and other symptoms, so apparently, yes, I have CS.

Deb, yes, I get the nervy burning thighs, but it's the backs and sides of my thighs that burn the worst. I also get that nervy burning feeling all over my scalp. This burning in my thighs and scalp comes on strong when I am in pain, usually when I'm trying to sit (very uncomfortable for me because of the pelvic pain). I can't even lay the back of my head on a pillow. I sleep on my side, but even that hurts to some extent, and I get frequent nervy headaches on the side I lay on. I also have a small degree of that burning and buzzing feeling in my hands and mouth/throat. It's all bilateral, too.

I take methadone (it is known to help with neuropathic pain more than the other opiates do). I've also found that a small dose of Xanax takes away the "buzzing" CS symptoms, and my neurologist affirmed that that has been the experience of other patients he's had. But the "traditional" medicines that are supposed to help reduce CS are the SNRIs Cymbalta and Savella, and I haven't tried either of those yet, mostly because I am emetophobic (terrified of nausea and vomiting), and those medicines have a common side effect of nausea, though not everyone gets nauseated.

One more thing - I've noticed that when I tense my muscles and "guard," the buzzing/burning becomes stronger.

I am very interested to hear if any others have CS and what has helped.

Dear Make-it-stop,
I wanted to let you know I did try Cymbalta - took it for about 18 mos, along with 1800-2100 mg of gabapentin. I felt the Cymbalta wasn't helping, so I very, very slowly got off - and noticed no difference one way or the other. I'm still on the gaba.
Maybe you could try just a very, very low dose, and work up slowly, - I never had nausea from that. I felt a little "heady" in the beginning, but that went away. coming off I felt more emotional, but that too went away. My GP added noritryptiline, low dose of 30 mg while coming off the Cymbalta, that seemed to help too. I do get nausea, and faint sometimes just from taking one vicodin, luckily that's not very often.

check out this website - http://www.instituteforchronicpain.org
upper right hand side there is a box highlighting several pain topics - sensitization is listed.
I found this to be a very simple, and clear explanation, and some suggestions etc.

Have you tried any mindfulness breathing, meditation etc.? I'm really working on this myself. Even if you can only start with 5-10 min daily.
When sitting on certain chairs, yes, I can also feel the back of my thighs burning, stinging - like they are rebelling. I want to massage the heck out of them, use a tennis ball etc., but that will make it worse for me.
Just yesterday, I got a TENS/IF home machine..... going to try that on the thighs several times a day.

I'm sorry to hear you are having so much pain, hope you find something that helps
Debbie

Debbie, great link, thanks. I went into this 10 years ago and only got out with meds, but I can't take meds now, so I'm looking for ways to just calm the system down. I couldn't believe once my PT showed me (new PT) how much I am holding my breath! I was better a few months ago when I started meditating, but the constant stress of the muscle spasms and the doctors doing nothing made me go even further into this state. I just wish it would go away, I miss the old me who never reacted to anything like this.

Oh Antonia, I know exactly how you feel, I miss the OLD me too! I see glimpses of her once and awhile. If this dang pain would just leave me be, I would be fine!!!!
I did take a meditation, mindfulness course locally. I would do everything when there, and I could sit or lay down, didn't matter. When I'm home, I find taking 30 min for
meditation seems like hours. I have to just keep doing it, and probably first thing in the morning. Before my mind really gets going. I know I'm not supposed to have any
expectations for results, but just let it be.

I agree with you, that stress of pain, no proper medical help, insensitive medical people, lack of proper medications in the beginning led to this state. I soooooo think that is true.
Now I have to deal with it the best I can.
Have you read the book "Full Catastrophe Living" ?
I am reading it right now . . . . might be helpful to you.

Take care,
Debbie

Debbie,

I just started seeing a new (pelvic) PT, and last session she did something called skin rolling / connective tissue mobilization on the backs of my thighs and my backside. Instead of a muscle massage it was a fascia massage. I felt really loose and good after the session. The next day (which was yesterday) I had a mini flare, which was expected. We are planning on doing this twice per week, and I'm really excited about trying this. Have you tried this before?

Glad to hear noritryptiline is helping a bit for you. Coincidentally my doctor has just prescribed this for me, so I will probably take my first dose tonight. I tried amitryptiline before but didn't notice a difference, but the doctor who prescribed the noritryptiline said that this might help more - something to do with increasing norepinephrine more than the amitryptiline does. He is planning on trying me on gabapentin next, and I think after that I will try the Cymbalta, after all - you're right, if I start with a small dose the side effects would be more tolerable. And my stomach is pretty strong when it comes to meds anyway. I'm sure you know this, but make sure to have enough food or milk in your stomach when you take the narcotics.

Funny you mentioned mindfulness because my friend was telling me today I should try it and I'm planning on reading about it later tonight.

Thanks for the link on CS; I'll take a look at it tonight.

Although I have not been diagnosised with CS I am geetting connective tissue work. My PT said there is no maintenance for this condition and towards the end of last year I needed to coming post surgery time ran out. At the last visit she brought my husband in and taught how to do the connective tissue on my abdomen/stomach, thighs back and front and gluetes. It really does make a difference and lowers pain if I am tightening up and keeps it away.
Janet

Good to hear, Janet! Yeah, I have a feeling this will help.

Debbie, well I went off of a sleep medication I was on briefly this summer, and had a horrible reaction to that. It started this sensitization problem, which I didn't have before, and my body broke down accordingly within a few months. 6 months now since the med reaction, and I just wish it would abate, but it seems almost to get worse and worse. Honestly, the pain isn't the worst of it for me, it's the constant spasms and complete dysfunction of the muscles. This doesn't even feel like my body, and no matter how much I pretend and try to visualize being in my old one, it just never lets up. I'm so horrified to find myself in this position that that is one of the big problems.

The other is that I was never level before, never put all my weight on my right leg standing in one place, never sat on it, always was crooked. It makes it hard for the doctors to see that I am not very unlevel, and I keep tying my hip up to my body, putting a lift in my shoe, anything to reduce the feeling that I cannot hold my hip up.

Very disappointing doctor's appt. today, sorry for being so upset. I got one of the "it's all in your head" guys again, despite multiple MRIs to the contrary. He wouldn't even do the pelvic EMG.

Antonia,
Have you ever seen one of the PN specialists? If not, is that possible for you?

I don't know about going off of drugs, and then increasing the CS or bringing on other symptoms. Sorry I just don't know so can't comment.

You are in my prayers,
Debbie