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Pelvic pain, burning VJ/ prostate, urinary type problems support group


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I don't know if there is already a group for this or not. A really nice member on here has been helping me with my issues as she has suffered from them as well. I understand there are a few others on here men and women have pelvic pain/ urinary/prostate type problems. I have really bad pelvic pain, burning vagina (sorry guys) and urinary frequency/burning. After a billion tests by many DR's  and negative for all including VD (and  I don't sleep around) all negative. The pain makes me much more depressed and irritated. Anyone find anything that helps?  Home remedies etc..... Thanks in advance...

 

And guys, don't be shy, please chime in. I've read a few threads about guys complaining about prostate/ pelvic type problems that were really painful. We're all in the same boat.

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Hi oldgreymare,

    I am sorry you have this collection of symptoms...it is miserable. I had them early on and now only occasionally. They were the presenting symptoms of tolerance after intermittent use of benzos. My doctors treatment was full time xanax and valium. I did not realize what I was getting myself into. Now, 39 month later I have tapered from both x and v and am much much better.

 

  I sought care from several docs including flying to San Francisco to see a pelvic pain specialist. The most helpful treatment was trigger point release therapy by a pelvic floor women's health physical therapist. There are a few books available you could use to self treat...but perhaps your city has a professional that could help you?

 

  I am away from my library and do not remember the exact titles. I believe one author is Isa Herrera, a physical therapist. The other Amy Stein(?) also a PT. If you google their names perhaps they will come up. Or you could search for pelvic pain using the search option here....my old posts may come up with these references and more of my story.

 

  Let me offer you hope....in my case I believe 90% of the pain was from benzo use. You will get better. Feel free to ask me any questions. I am happy to help you.

Warmly,

 

Carita

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My story is similar....

In November I had an IUD placed which caused severe pelvic floor spasms.  Unfortunately, this diagnosis came 3 months later and by that time I was already being treated for depression and major anxiety with klonopin due to the chronic pain.  I did find a physical therapist through a uro gyn specialist and they took me 90% of the way to better easing my muscular discomfort but the mental issues and anxiety has a stronghold on me.  After feeling better, hubby and I became more "intimate" and I ended up with urethral inflammation which has yet to resolve.  I've been tapering off of the K for about a week now because of sleep issues, memory issues and depression enhancement.  Now that you mentioned it, the k also might be causing the residual discomfort which I never realized.

 

Try to find a physical therapist or urogyn to give you a referrals and don't let them tell you that you have interstitial cystitis.  It's a bunk diagnosis.  Check with your gyne for yeast infections (sometimes they mask themselves) and I went on an alkaline diet to try to ease discomfort and burning in my urethra (I had a very high white blood cell count but no UTI).  It seems to be helping along with a few advil per day.  If you want the elimination diet, let me know.  I'm happy to share.

 

Chin up.  Know that there are several of us dealing with pelvic pain and discomfort, trying to put one foot in front of the other and work it all out.

Dria

 

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I wish I had something new to tell you OGM.  After years of severe irritation/pelvic pain and numerous courses of antibiotics just because that's what doctors always prescribe my GP put me on Ativan. Overnight, problem gone.

 

It pretty well stayed gone, with some minor flare ups over six years.

 

Then I decided to taper off of Ativan.  The problem came back with a vengeance, and even though I'm back on my original Ativan dose there's no joy.

 

I have tried various supplements and prescription medicines to no avail.  I have heard that physical therapists who specialize on pelvic floor muscles can help, but I have no idea where to find one.

 

You're not alone, suffering with this condition, but I know that it sure feels like it.

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Hi,

 

I am here to offer hope. I had burning vagina, and burning buttocks that I call "saddle ass". It was alarming. This was fairly early in withdrawal. But it went away (along with crippled hands) after I made significant reduction in dosage, and switched to micro tapering. Remember that we are suffering from an iatrogenic illness, not just trying to withdraw from a drug safely. This and many other horrible symptoms will likely go away. Keep the faith.

 

Bennie

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My story is similar....

In November I had an IUD placed which caused severe pelvic floor spasms.  Unfortunately, this diagnosis came 3 months later and by that time I was already being treated for depression and major anxiety with klonopin due to the chronic pain.  I did find a physical therapist through a uro gyn specialist and they took me 90% of the way to better easing my muscular discomfort but the mental issues and anxiety has a stronghold on me.  After feeling better, hubby and I became more "intimate" and I ended up with urethral inflammation which has yet to resolve.  I've been tapering off of the K for about a week now because of sleep issues, memory issues and depression enhancement.  Now that you mentioned it, the k also might be causing the residual discomfort which I never realized.

 

Try to find a physical therapist or urogyn to give you a referrals and don't let them tell you that you have interstitial cystitis.  It's a bunk diagnosis.  Check with your gyne for yeast infections (sometimes they mask themselves) and I went on an alkaline diet to try to ease discomfort and burning in my urethra (I had a very high white blood cell count but no UTI).  It seems to be helping along with a few advil per day.  If you want the elimination diet, let me know.  I'm happy to share.

 

Chin up.  Know that there are several of us dealing with pelvic pain and discomfort, trying to put one foot in front of the other and work it all out.

Dria

 

 

Wow, thank you for the info. I almost got an IUD a few years ago. I backed out at the last minute. Glad I did now.

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I wish I had something new to tell you OGM.  After years of severe irritation/pelvic pain and numerous courses of antibiotics just because that's what doctors always prescribe my GP put me on Ativan. Overnight, problem gone.

 

It pretty well stayed gone, with some minor flare ups over six years.

 

Then I decided to taper off of Ativan.  The problem came back with a vengeance, and even though I'm back on my original Ativan dose there's no joy.

 

I have tried various supplements and prescription medicines to no avail.  I have heard that physical therapists who specialize on pelvic floor muscles can help, but I have no idea where to find one.

 

You're not alone, suffering with this condition, but I know that it sure feels like it.

 

 

Thank you for the reply. The meds really do seem to screw up every part of our body.  :(

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Hi,

 

I am here to offer hope. I had burning vagina, and burning buttocks that I call "saddle ass". It was alarming. This was fairly early in withdrawal. But it went away (along with crippled hands) after I made significant reduction in dosage, and switched to micro tapering. Remember that we are suffering from an iatrogenic illness, not just trying to withdraw from a drug safely. This and many other horrible symptoms will likely go away. Keep the faith.

 

Bennie

 

Do you think the Ativan set it off? When I'm uncomfortable down there it just makes it all more miserable.

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Hi,

 

I am here to offer hope. I had burning vagina, and burning buttocks that I call "saddle ass". It was alarming. This was fairly early in withdrawal. But it went away (along with crippled hands) after I made significant reduction in dosage, and switched to micro tapering. Remember that we are suffering from an iatrogenic illness, not just trying to withdraw from a drug safely. This and many other horrible symptoms will likely go away. Keep the faith.

 

Bennie

 

Do you think the Ativan set it off? When I'm uncomfortable down there it just makes it all more miserable.

 

If you didn't have the burning until you started tapering, my estimation that it's a withdrawal symptom of Ativan not an independent condition or disease. It is pretty freakin uncomfortable. I put an ice pack on my crotch. It helped.

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[84...]

It's the benzo.

 

Burning pain and irritation is caused by these horrible drugs. They work on the nervous system. I had all of that and more. It vanished after 20 months off the drug. I've had it again in this relapse from Keflex. Stunned, and very angry that an antibiotic triggered a setback. Why we get attacked there is maddening, but it happens. It's horrible. But, it does go away. I'm waiting once again for this vexing pain to stop. I've had 50 sx return and most are gone, but the urethra, rectum, butt cheek pain persists. Today it is less intense so I hope it's on it's way out. Very troubling and crippling.

 

I flew to California Pelvic Pain Clinic run by the author of Headache in the Pelvis in 2006 while still on Ativan. The top urologist at Stanford, co-author, confirmed I never had interstitial cystitis. He said the burning was coming from "something else." Yep, benzos. There I learned self massage and relaxation for pelvic floor pain. Good to know, but until the drug is out of your body and time passes in withdrawal, the technique did very little to help. Time away from benzos is the only cure. Believe me, I tried everything under the sun. Everything.

 

Remember, benzos are muscle relaxers. Once  tolerance happens, or reduced or taken away, the muscles can spasm and feel like cement. This causes swelling and/or entrapped nerves as well as trigger point knots everywhere. If the pain is chronic you can be assured it's from the drug. Most likely the pudendal nerve is affected or inflamed. As are other nerves in the pelvis. Interstitial Cystitis is actually Pudendal Neuralgia in many cases. Or, a staph infection that goes undetected in urinalysis. Urethral Syndrome can be a localized staph infection treatable with silver gel.

 

I highly recommend Trigger Point Therapy Workbook. It is invaluable for self treatment of any pain problem. There are illustrations to guide you as to where your pain is coming from and how to deactivate those tight knots. But, again, the drug is the cause. If it goes on too long the pain can spread to the rectum, as it did for me. Horrible. Then, into the butt cheeks, thighs, hips, abdomen.

 

Avoiding inflammatory foods like wheat, nightshade veggies, and dairy may help. Avoiding high glutamate food may help. Avoid gassy foods as the colon is very connected to pelvic floor pain.  But, ultimately, it is just time away from drugs. Once off the Ativan my burning got worse for a while. And, turned into pain...it was nasty. I felt like I was sitting in acid and like a car ran into my crotch. The rectum stopped functioning and felt like a jackhammer drilling into my bones. But, it all went away. It takes time. Hard to believe a drug could do this.

 

I wasn't on Benzo Buddies when I was ill from Ativan withdrawal. I was on Benzo Friends. I was the only member with this burning crotch. Plus, 75 other crippling sx. I felt very hopeless and alone. I even wrote to Heather Ashton and she scared the hell out of me. She said she never heard of this and that it probably wasn't the Ativan. Well, she was wrong. She put horrible fear into my fragile mind and that was awful and unappreciated. It was the Ativan. 100%. It all went away after 20 months off that poison.

 

Ativan is a horrible chemical. All benzos are horrible. Your pain will go away.

 

Denise :smitten:

 

 

 

 

 

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It's the benzo.

 

Burning pain and irritation is caused by these horrible drugs. They work on the nervous system. I had all of that and more. It vanished after 20 months off the drug. I've had it again in this relapse from Keflex. Stunned, and very angry that an antibiotic triggered a setback. Why we get attacked there is maddening, but it happens. It's horrible. But, it does go away. I'm waiting once again for this vexing pain to stop. I've had 50 sx return and most are gone, but the urethra, rectum, butt cheek pain persists. Today it is less intense so I hope it's on it's way out. Very troubling and crippling.

 

I flew to California Pelvic Pain Clinic run by the author of Headache in the Pelvis in 2006 while still on Ativan. The top urologist at Stanford, co-author, confirmed I never had interstitial cystitis. He said the burning was coming from "something else." Yep, benzos. There I learned self massage and relaxation for pelvic floor pain. Good to know, but until the drug is out of your body and time passes in withdrawal, the technique did very little to help. Time away from benzos is the only cure. Believe me, I tried everything under the sun. Everything.

 

Remember, benzos are muscle relaxers. Once  tolerance happens, or reduced or taken away, the muscles can spasm and feel like cement. This causes swelling and/or entrapped nerves as well as trigger point knots everywhere. If the pain is chronic you can be assured it's from the drug. Most likely the pudendal nerve is affected or inflamed. As are other nerves in the pelvis. Interstitial Cystitis is actually Pudendal Neuralgia in many cases. Or, a staph infection that goes undetected in urinalysis. Urethral Syndrome can be a localized staph infection treatable with silver gel.

 

I highly recommend Trigger Point Therapy Workbook. It is invaluable for self treatment of any pain problem. There are illustrations to guide you as to where your pain is coming from and how to deactivate those tight knots. But, again, the drug is the cause. If it goes on too long the pain can spread to the rectum, as it did for me. Horrible. Then, into the butt cheeks, thighs, hips, abdomen.

 

Avoiding inflammatory foods like wheat, nightshade veggies, and dairy may help. Avoiding high glutamate food may help. Avoid gassy foods as the colon is very connected to pelvic floor pain.  But, ultimately, it is just time away from drugs. Once off the Ativan my burning got worse for a while. And, turned into pain...it was nasty. I felt like I was sitting in acid and like a car ran into my crotch. The rectum stopped functioning and felt like a jackhammer drilling into my bones. But, it all went away. It takes time. Hard to believe a drug could do this.

 

I wasn't on Benzo Buddies when I was ill from Ativan withdrawal. I was on Benzo Friends. I was the only member with this burning crotch. Plus, 75 other crippling sx. I felt very hopeless and alone. I even wrote to Heather Ashton and she scared the hell out of me. She said she never heard of this and that it probably wasn't the Ativan. Well, she was wrong. She put horrible fear into my fragile mind and that was awful and unappreciated. It was the Ativan. 100%. It all went away after 20 months off that poison.

 

Ativan is a horrible chemical. All benzos are horrible. Your pain will go away.

 

Denise :smitten:

 

 

Thank you for replying! You are awesome  :)  I am so sorry all your pain came back  :(    Still thinking of you and your kindness.  :smitten:

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Hi,

 

I am here to offer hope. I had burning vagina, and burning buttocks that I call "saddle ass". It was alarming. This was fairly early in withdrawal. But it went away (along with crippled hands) after I made significant reduction in dosage, and switched to micro tapering. Remember that we are suffering from an iatrogenic illness, not just trying to withdraw from a drug safely. This and many other horrible symptoms will likely go away. Keep the faith.

 

Bennie

 

Do you think the Ativan set it off? When I'm uncomfortable down there it just makes it all more miserable.

 

If you didn't have the burning until you started tapering, my estimation that it's a withdrawal symptom of Ativan not an independent condition or disease. It is pretty freakin uncomfortable. I put an ice pack on my crotch. It helped.

 

Actually at the end of every shower I take a Poland spring bottle of almost frozen water and rinse everything down there with it. The one with the squirt top. One would think after the pucker factor  ::)  everything would tense up but after the initial WHOA COLD  8)  I will get a brief window where the burning is gone and the pain is better. Usually like an hour.  But Brrrrrr........ And then it comes right back.

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Hi,

 

I am here to offer hope. I had burning vagina, and burning buttocks that I call "saddle ass". It was alarming. This was fairly early in withdrawal. But it went away (along with crippled hands) after I made significant reduction in dosage, and switched to micro tapering. Remember that we are suffering from an iatrogenic illness, not just trying to withdraw from a drug safely. This and many other horrible symptoms will likely go away. Keep the faith.

 

Bennie

 

Do you think the Ativan set it off? When I'm uncomfortable down there it just makes it all more miserable.

 

If you didn't have the burning until you started tapering, my estimation that it's a withdrawal symptom of Ativan not an independent condition or disease. It is pretty freakin uncomfortable. I put an ice pack on my crotch. It helped.

 

Actually at the end of every shower I take a Poland spring bottle of almost frozen water and rinse everything down there with it. The one with the squirt top. One would think after the pucker factor  ::)  everything would tense up but after the initial WHOA COLD  8)  I will get a brief window where the burning is gone and the pain is better. Usually like an hour.  But Brrrrrr........ And then it comes right back.

 

You do realize that as horrible as this withdrawal process is, there is the distinct possibility that someday you may laugh about doing that?  :idiot: I used to think ice pops...  ::)

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  I have also started having pressure and pain feelings after being on the Valium since January.  I had crossed from the Ativan.  I noticed my urine stream seemed a little weak a few months ago but didn't think much of it as it didn't cause pain etc.  Now that I am tapering the Valium I am having all kinds of things pop up.  Today I had feelings of pressure etc almost like I had a UTI.  I don't think I do but still have kind of a weak stream.  I'm really scared of this as will the Dr. insist I get off the Valium immediately?  I can't do that, I think I would lose it.  What has anyone else's Dr.s suggested as far as this symptom?  I am so scared. I never had this on the ATivan, now that I have tapered down 5 mg. of V seems symptoms are getting worse.  Will the Dr. make me stop V because of the urinary symptoms.  I hope this goes away, I can't imagine having to suffer with this all the way down and then after jumping.  So sorry I ever took the first pill of this poison.  Any help is appreciated. I"m just scared I will do permanent damage to my urinary system if I stay on V.  Thanks for the help.
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Hi Freeme,

 

You don't know that you'll feel this way for the rest of your taper and afterwards. That's catastrophic thinking. Most likely, as for many people, this is a withdrawal symptom and will go away. Do the best you can to minimize the discomfort. Tapering any Benzo is going to bring up symptoms, and it could be that this would have eventually happened with Ativan, not just Valium. See if you can ride it out, you are not alone in this. Hang tough.

 

Bennie

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  Thanks for the encouragement.  I didn't get much sleep, woke up at 1:30 am with nausea, hands tingly again and that slight pressure feeling.  I also had diarrhea and thick mucous in throat.  I think since I just cut 2 1/5 weeks ago I might be still getting a wave of symptoms.  Got first after about a week of the cut, then felt better.  I try not to think the worst but you know how it is.  when you think this will go on forever, you have so long to taper, and new things keep popping up, plus I'm on other meds that will need tapering once I get through my surgery it just seems never ending and I get anxious.  Hopefully this symptom will settle down.  I don't think I could be as strong as so many of you that have been through it.  I'm going to make an appt. and see if theDr. will give me the liquid V and try the daily microtaper and see if I do better on that.  Hope everyone has a better day and God Bless.
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  Thanks for the encouragement.  I didn't get much sleep, woke up at 1:30 am with nausea, hands tingly again and that slight pressure feeling.  I also had diarrhea and thick mucous in throat.  I think since I just cut 2 1/5 weeks ago I might be still getting a wave of symptoms.  Got first after about a week of the cut, then felt better.  I try not to think the worst but you know how it is.  when you think this will go on forever, you have so long to taper, and new things keep popping up, plus I'm on other meds that will need tapering once I get through my surgery it just seems never ending and I get anxious.  Hopefully this symptom will settle down.  I don't think I could be as strong as so many of you that have been through it.  I'm going to make an appt. and see if theDr. will give me the liquid V and try the daily microtaper and see if I do better on that.  Hope everyone has a better day and God Bless.

 

Give yourself some time for a transition using liquid V. Not that I've been on V, it's what I've heard. Symptoms may be less severe with MT. I'm MTing. I became functional on MT. Some of the most severe symptoms are likely to be at higher doses and early on. So don't give your despair lots of weight. Recognize this as chemically driven. The other day I had a meltdown and realize it was benzo lies, all the things I told myself, that I'd feel this way always. And I'm on a really small dose. Well, yesterday I had a 90/10 day! And this morning, feeling pretty good again. I have 38 more cuts, woo hoo! And yet, that's a few more months at my taper rate. And yes, you DO have the strength to endure. Do you really have a choice? You WILL persevere, you ARE strong.

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  So happy you are having a nice good wave.  I still feel awful, I'm in bed but you give me hope.  I also get the emotional depressed and anxious feelings when these physical things hit. tomorrow is another day so I hope its better for us all.  I want to feel I am strong enough but when you get in this state , well you all know.  I hope your good days last all the way down, you have come so far.  One day I will be there also God willing.  Have a good day everyone.
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Freeme, oldgreymare, everyone with these types of burning groin, UTI type issues,—you will someday feel better. I have been bedridden, in pain, frightened. No longer. Healing happens. Keep the faith. Ice is good symptom relief. Even try ice on your spine to disrupt the pain signals that get transmitted to peripheral areas. And if anyone has more suggestions, it's be great to hear!

 

Bennie

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Hi everyone  :thumbsup: for the last 3 day's around my clitoris area feel's raw but doesn't look like it feel's raw that is  :sick: Its mainly the right side, and I can't wipe that are as it feels like I'm touching a raw nerve.

 

I have also had a frequent urination problem for ages but now know its the benzos , and I believe its my adrenals are also hurting like hell more so if I lay on my back but this comes and goes, and has done so for a while. But I'm wondering about the raw clitoris problem that seems to have come from nowhere, I did have a slight itch on the day the raw pain kicked in but nothing major.

 

 

Love Nova xxx  :smitten: :smitten: :smitten:

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  I have also started having pressure and pain feelings after being on the Valium since January.  I had crossed from the Ativan.  I noticed my urine stream seemed a little weak a few months ago but didn't think much of it as it didn't cause pain etc.  Now that I am tapering the Valium I am having all kinds of things pop up.  Today I had feelings of pressure etc almost like I had a UTI.  I don't think I do but still have kind of a weak stream.  I'm really scared of this as will the Dr. insist I get off the Valium immediately?  I can't do that, I think I would lose it.  What has anyone else's Dr.s suggested as far as this symptom?  I am so scared. I never had this on the ATivan, now that I have tapered down 5 mg. of V seems symptoms are getting worse.  Will the Dr. make me stop V because of the urinary symptoms.  I hope this goes away, I can't imagine having to suffer with this all the way down and then after jumping.  So sorry I ever took the first pill of this poison.  Any help is appreciated. I"m just scared I will do permanent damage to my urinary system if I stay on V.  Thanks for the help.

 

 

Hi Freeme  :thumbsup: I had your symptoms the benzos and WD cause bladder spasms either weakening the urine stream or making you unable to pass water, before I knew I was in Tolerance WD I went to Hospital because I was in a state with other sxs and thought there was something sinister going on because I was getting so ill with weird things happening to me.

 

I was catheterized  because I was unable to pass water for a couple of day's although I felt desperate to go, once with a bag overnight and one other time they used an 'In and Out'' catheter which is a small  tube that just got the stream stated quickly and I was able to go as normal.

 

Before that I was going all the time frequently and now I'm passing water all the time again now,  ::) occasionally it goes back to hardly a trickle or feel's as If I want to go but can't. I now don't worry as it rectifies it self eventually, but if it went in to day's again without passing urine then I would seek medical help, but its not an illness or long term damage so don't worry about that its definitely Benzo related  sxs and will clear up eventually  :)

 

Love Nova xxx :smitten: :smitten: :smitten:

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Hi everyone. This group totally fits me. I keep on having pelvic problems. The most recent problem is when I turn my pelvis in bed, I hear a loud CRACK noise and then the other side feels inflamed for a few days. My muscles tighten up and etc.

I'm scared as to what this is. Am I moving my pelvis around? Am I having athritis?

Of course I ALSO have the peeing issues. And burning. And also weird sensations. It scares the hell out of me

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  Thank you all so much for encouragement.  I was in bed all day yesterday and didn't drink much water etc.  I do feel some better today but not normal.  I also still have diarrhea, tongue burning but so far no burning down there.  Urine output is very little but still going.  Corsair, I can't comment so much on the pelvis as all my pain is in lower back, hip buttock and down leg.  Taking meds for that also and the pain meds do help the burning etc.  All the other sx's seem benzo related but I'm so new I can't really say.  I'm so grateful for this topic.  It might be embarrassing but its a place we can come to discuss it and comfort one another.  I tried the ice bag between my legs.  It hurt but might have helped a little.  I wish a good day for everyone.  I am going back to bed and rest some more.  Have no appetite either so hope if this is a wave that I settle down soon.  I have to go to Dr. to ask him about the liquid V but I'm scared to change anything right now.  I'll probably wait another few weeks since this wave was really a doozy. 
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