Allodynia, Advice appreciated

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.

Allodynia, Advice appreciated

Postby PleaseHelp » Mon Jul 31, 2017 7:40 pm

Hello lovely community !

Hope you are all doing well. I got diagnosed with CPPS the last months instead of Pudendalneuralgia and doing better with Physical therapy and Stretching, Hot Baths, Infraredlight therapy and recently got rid of my medic's :)

People here were always helpful and amazing and had always advices for me in a kind way. So I came back again hopefully to get some good advices again about the problem I have with "Allodynia"

Saw some posts here about it so I thought it's the right place to ask about it and probably get some insider Informations..

Since CPPS is going to be better I realize the area where I have pain/prickling/pinching went much smaller..
Right now I "just" feel these type of pains in the scrotum area.. Sitting pain mostly went away - it directly affects the scrotum now and the perineum is mostly normal ! So a guy from here who helped me through a lot with his knowledge and kind words told me that this is probably Allodynia... I immediately checked it and all symptoms and descriptions seem to fit about it - unfortunately... Because the healing and prediction part is not the best i read... that's scares the hell out of me!

What are your experiences with that, can you cheer me up and give me hope about that?
I mostly read about how important a "healthy lifestyle" is in that case - i still don't have one but consider it now definitely!

What can I do? Do you have any tips for me? Can I get rid of this?

Greets
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: Allodynia, Advice appreciated

Postby Violet M » Wed Aug 02, 2017 2:02 pm

Hi PH,

I had allodynia too. It is one of the possible symptoms of pudendal neuralgia and it's not necessarily a permanent thing. I got rid of it. I think the important thing is to find the underlying cause of what is causing your allodynia and what is causing the nervous system to be overly sensitive. The diagnosis of CPPS literally means chronic pelvic pain syndrome. You don't need to find out from a doctor that you have chronic pelvic pain. You already know that. The diagnosis of CPPS doesn't tell you anything about what is the underlying cause of the chronic pelvic pain. It could be a bunch of different things. The trick is to figure out what the underlying cause is and to fix that. If it's anxiety, then you need to deal with the anxiety. If it's musculoskeletal problems like SI joint dysfunction or something else, then you need to deal with that. If there is something irritating the pudendal nerve, then you need to deal with that. I don't know what it is for you. It sounds like PT is helping which is a good sign. PT takes time and a lot of work to do all of the stretches, etc. so hopefully over time you will continue to improve. But if it helps temporarily and the symptoms just keep coming back then you need to try to figure out what the underlying cause is -- why it keeps coming back......

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5459
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: Allodynia, Advice appreciated

Postby PleaseHelp » Thu Aug 03, 2017 9:34 pm

Hey Violet, nice to see/hear you again! : )

Yea you are absolutely right - CPPS is a syndrome and could be a bunch of causes. In my case I figured out that "Muscle tensions" are the cause of my pain. Of course Pudendal nerve was related to that!
That's why physical therapy helped me so much and now since I'm got my ass up and don't be lazy anymore doing my daily exercises and workout it went so much better.
It's nearly so far that I don't even know if I still have these type of pain or if it is the remaining Allodynia!

I tried to find out a lot about Allodynia and hyperalgesia and a few forum/sites/poeple described it exactly how I feel it. - Like a permanent sunburn! That's the best description for it (how I feel it).

Someone told me that it needs to fade away and when I got rid of the main cause (chronic muscle tensions) there is sure the possibility to get rid of that too.

What are your thoughts about that now, related to my cause, muscles etc?
Any ideas of what I can do to for it, or isn't there anything I can do to help it.. (just wait and be patient?)
And did you hear about Capsaicin cream? That's something I found in treatment for it..
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: Allodynia, Advice appreciated

Postby Violet M » Fri Aug 04, 2017 5:17 am

So, I don't quite understand. You said you are better but you still have allodynia. Which symptoms are better?

For me, allodynia was related to nerve pain. It was a constant burning pain that slowly faded away many months after PNE surgery. Also the muscle tension slowly faded away too. So I'm not sure why you would still have allodynia if the muscle tension is gone. Maybe the nerve is still irritated? The thing that helped me a lot with allodynia was to sit in alternating very warm and very cold water. I believe it promoted healing as well as temporary pain relief because hot/cold therapy is known to promote increased blood flow which allows fresh blood to the area and removes toxins. viewtopic.php?f=25&t=5267
You could also try numbing cream or spray with lidocaine in it for temporary relief. Some people find lyrica helpful.

I did not use capsaicin for burning pain/allodynia but as the nerve was healing I went through a very itchy stage of recovery and I used capsaicin then. The capsaicin burned but it was the only way I could get to sleep because the itching was so bad. The burning made the itching stop for a little while so I could get to sleep.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5459
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: Allodynia, Advice appreciated

Postby PleaseHelp » Fri Aug 04, 2017 9:59 pm

Sorry I could have said it better I guess, so:
I had pain now 1 year at - Sitting, crossing over legs, laying in a few positions, pick up things more than 2kg, I had some pain by jogging or standing on the Crosstrainer. Also I had sometimes pain when I did nothing in my calming situations when I just lay around etc. I wasn't able to drive a car without getting more and more pain. After 5-10 minutes it was horrible. - The pain was - stabbing, pressure, dragging pain and it really "hurt"

Now since I went to physical therapy and doing my exercises frequently I got rid of nearly all of the "pain" I described in this situations. I can doing sports, exercises, driving a car 1,2 hours without getting more and more pain, I can sit without getting this pain after minutes where I had to stand up etc. What left is a really uncomfortable prickling /tingling and the "sunburn" - pain like, but it's not a extreme pain, you know just like a sunburn feeling.
These symptoms I get out of nowhere or when the skin meets the skin on the thighs etc. So this is where I found out about Allodynia. The pain is a big difference and I wouldn't even describe it as a real "pain" now. There is the difference - I hope I explained it good enough now. So it changed from muscle pain that really hurt to uncomfortable prickling/tingling and like sunburn - and I got rid of the most causes like I told in the begin.

I will try lidocaine cream and capsaicin, but as you said it's unfortunately only temporary relief...

I did the cold/warm changing baths a few months ago, felt good - I will try to continue with them, maybe that helps me!
And I am just at the beginning of getting better and better, so maybe it needs time and with time Allodynia will fade too.
PleaseHelp
 
Posts: 43
Joined: Thu Feb 23, 2017 10:41 pm

Re: Allodynia, Advice appreciated

Postby Violet M » Sat Aug 05, 2017 5:45 am

Wow, that's great that you have improved so much! I think maybe time and patience are what you need now and hopefully the burning will slowly fade away.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5459
Joined: Mon Sep 06, 2010 6:04 am
Location: United States


Return to WELCOME CENTER

Who is online

Users browsing this forum: No registered users and 3 guests