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» LymeNet Flash » Questions and Discussion » Medical Questions » Pelvic floor spasms & Pudendal Neuralgia help, scared

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Author Topic: Pelvic floor spasms & Pudendal Neuralgia help, scared
6Hypnone
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I've had pain in the rectal area which my doc seems to think is pelvic floor issues, spasms in the muscle. It's to the left or right side, inside.

I also have a shock like feeling right in the middle, which I looked up and sounds like this Pudendal Neuralgia.

Not many posts on this but have read it may be related to neuro lyme and that it gets better with treatment.

I've been treating for a year w/out much success (or it feels that way) and new symptoms keep coming up. My new ND is going a different route and really getting to the initial problem that caused my immune system to hold onto lyme--so sleep, stress, diet, etc. and is working up from there.

Still going to my Lyme doc too, who uses more of throw supplements and meds at it.

Anyway, this is causing me so much anxiety b/c I feel like I'm falling apart and not making progress. I'm scared. And shocks in the anus--besides being embarrassing, kinda sounds like torture.

What has helped you with this? I'm doing pelvic floor exercises but just started w/this therapy.

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Lymetoo
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I have a Lyme friend who used to get bouts of this. The one thing that helped her was Valium.

She said it was very painful!!

Ask your doctor about this for some relief.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Told you I was sick
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6Hypnone-

Ugh...sounds like we're living double lives. Have these same issues myself. Please PM me if you want to talk about this more in-depth.

Sending you hugs as I well know this torture.

Best,
Told you...

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6Hypnone
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I dont think I want to go the controlled substance route. It's frightening if that's all that helps...
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Lymetoo
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6 .. She only takes it when it gets bad. I do hope your situation improves soon so you don't have to go that route.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Pocono Lyme
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It IS very painful! Try a glycerin suppository. Keep them in the fridge as I think the cold is what might be what actually relieves it.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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Robin123
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Well, I fixed this for me, and without even knowing I had Lyme for another year and a half!

My pelvic region went into spasm, walking was very difficult, I had pelvic physical therapy and it wasn't working very well because my muscles were in spasm.

So I decided to put myself in a swimming pool to see if I could get my body to move. I wore a torso float belt around me to help float me in the water.

Then I did every stretch I could find with my legs, abdomen, pelvic area off the side of the pool and off the ladder. It was like finding whatever outer muscles would stretch a little. I took narcotic med for the first month to cover up the pain of doing this weekly stretch work.

By the end of a month, I could tell my pelvic pain was going down some, so that indicated to me I was going the right direction.

So my advice to you if you try this - just keep going because it's an accumulative process, little by little, as muscles begin to stretch out.

I added in light lap swimming while wearing a torso float and mask and snorkle so I didn't have to turn my head. On my back, I supported my head with a kick board.

And it got easier and deeper. It was like unraveling a twisted ball of yarn - you start from the outside, right? And get the outside strands, and then work in towards the center.

That's the process I was engaged in with the pelvic muscles - there's about 35 of them - you can see it in anatomy pics.

So what this did - stretching out the muscles brought blood flow in and waste products out. I think the muscles are burning from too much lactic acid in them that's not getting out.

This weekly stretching took me 9 months to get to core muscles and end the pain. I suppose stretching sessions could be upped to 2x/week. Pool temp was regular. If you can find a heated pool to do it in, that could be even better.

Then take needed supplements, like magnesium for sure, and discuss with your doc. I didn't know that part, because I didn't know what was wrong.

I'm in PT now for strengthening. I think PT works for us sometimes when we have Lyme, and sometimes not, when we actually have to engage in a different kind of work, ourself, to get through the unique problem being created by Lyme disease.

One more comment in reading what you wrote - I would guess that your nerves are being squeezed by the tight muscles, so as you do stretch work like this, the pressure will get relieved.

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lapis29
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I have had something very similar. Chronic anal fissures and chronic muscle spasms in the sphincter area.

it is now FINALLY getting better after like 5 years. my answer is DMSO

I have a thread on another lyme forum under this same username regarding DMSO and lyme. This is AMAZING stuff. miraculous.

basically I just made sure the area was very very clean, then sterilized it with 91% alcohol, then applied dmso while sitting on a plastic bag. thats it.

after about a week the situation is MUCH improved.

I am also using DMSO + topical B12 on my joints and ear as well. I wish more poeple used this stuff because it is damn near a cure all.

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6Hypnone
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@lyme--Mine is pretty sporadic. Was hers that way too? Doesn't seem like any action or activity makes it worse (or better).

@Pocono--Well, I dont have issues going tho. Just hurts, like waaay in there.

@Robin--I'm going to ask my PT about the stretches and logic of what you explained. I have a feeling she'll agree.

@lapis--mine is more, kinda UP farther and deeper...like the muscle above that. It surrounds all the 'stuff' down there. So I dunno if a topical would work for me. But I have heard good things about that anyway.

I will ask about both those topicals at my ND.

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lapis29
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dmso is not your typical topical, it penetrates DEEP into the tissues. just apply it as close to the problem as you can and let it do its thing.
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Robin123
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I know there's such a thing as pool PT therapy since I've done it here. What I did was different than being told to do certain exercises - what I did was exploratory, to discover what my body would respond to. It's all I could do after flunking pelvic PT!

And it worked. It's slow go, but it's "real-go," if you get what I mean!

Here's my take on everything at this point. We can try medical modalities, but sometimes they're not going to work for Lyme disease.

I fell off the bandwagon of tried-and-true medical care many times in the years I didn't know I had Lyme and was forced to discover what worked for me, without knowing what was going on - ie double-blind. Lyme does not always fit conventional care.

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Lymetoo
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quote:
Originally posted by 6Hypnone:

@lyme--Mine is pretty sporadic. Was hers that way too? Doesn't seem like any action or activity makes it worse (or better).


-
Yes, she would get bouts of it. It might be OK for a few months or weeks and then BAM!

--------------------
--Lymetutu--
Opinions, not medical advice!

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