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Twitching, tingling and sensations in the legs can be caused by Herpes


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  • 6 months later...

Hello all, i know i have hsv2. Have had for over a year, and take valtrex 1gm a day, my muscle fascillations started 4 weeks ago out of nowhere started in my left testicle then to the calfs then went to my thighs and feet, got a blood panel test done and its all normal. Got tested for all stds. But i only seem to notice it when my body is in a rest state, like sitting or laying down, it drives me absolutely nuts, i now get the spasms all over my body. Ive uped all my vitamin intakes especially vitamin D3 but nothing helps. Any insite to this would be greatly appreciated, going to see a specialist on friday.  

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I'm posting an update so that there is some sort of "ending" to this thread.  I am now about 3 months post exposure.  Last week I tested negative again.  The only stereotypical "lesion" I had appeared on the top of my thigh and it was small.  It went away and scabbed over and then another, smaller one popped up next to it but was so small it didn't scab over.  I figured that was my sign to get tested again as I thought that would trigger a positive.  It didn't.  The lesion appeared on a Friday and was gone by Monday and I didn't want to go to the Dr on a weekend....again.  I probably should have.  I went to the Dr. not long after that to get Valtrex since my ears continued to ache.  I've been on Valtrex for 2-3 weeks now and I'm about 95% normal.  My twitching has gone away and the tingling is mostly gone.  My right ear still pops and "gurgles" like I'm recovering from a sinus infection.  Now that the twitching is gone I can sleep some and no longer rely on sleep meds that often cause side effects.  So, after 3 months, my body is starting to return to normal.  There is hope for those of you out there that suffer serious twitching episodes.....sometimes it can go away.

Does anything set off the gurgle noise in your ears?

I've had this for months and ENT doctors cannot find anything wrong with me. I also experience many other HSV symptoms, but cannot tests positive.

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On 3/20/2019 at 11:40 PM, New2GH said:

@Shortcake, Hi, was the tingling constant for you?  How long did you have the tingling for?  Thanks!

Hi guys,  sorry for jumping in.  Nice to see a forum that is active recently.  

I have hsv had to diagnose myself as my doctors that I went to see were all retards and didnt know what I had.  Just have creme for fungal and said to wash better.  I told them are u serious i've been washing myself for 30 years never had a problem.  They are so clueless on what hero can cause. 

From a blow job i'm sure of. Rash pimple like then went away.  Never to return for 6 years with any symptoms other than felt like traveling up gi track.  Burning on and off and constant vomiting mouthfuls after eating anything. 

Then later in life

genital area with with lesions tingling fever etc. 

After treatment with cream only it felt like virus was moving to different parts of my body.

Legs were glowing red accompanied with high fever. Then three months later same thing arms glowing red with fever as well. 

Again short time after face red blotchy with fever and tingling pain. Then red on scalp to the point my hair dresser said something so I knew at this point I wasn't imagining shit anymore like all the doctors insitsted I was. 

Tingling and crazy crazy sweats, extreme heat intolerance (cold weather and air I find help) trouble breathing,  inflammation around eyes and face puffyness, upper cheeks below eye across nose to other side red as fire but would come and go rapidly. I couldn't think at all or answer simply questions properly or even think or ACT  normal.  I felt like a crack head  and was acting like a crack head (no i have never tried it.  I come from a good European home with excellent hygiene and nutrition) Nausea and vomiting slightly after eating. Fatigue sore joints,  loss of strength. 

Doctors said aniexty I said bull shit.  

Told them I want valtrex now I had enough. 

After about three months all symptoms have reduced dramatically I wish I had started one a day valtrex 500mg early to stop the spread.  Im experimenting with two 500mg doses as I still get the odd sweat during the day still and facial and genital tingling at times.  

I did try stopping valtrex once to see.  Everything flared up right away. 

I don't wish this on anybody. 

I believe I have had it for 15 years now and it ruined my life in top level sports. I was ohl hockey player and it affected me so much physically and mentally I had to stop playing sports.

I went from running my own construction company doing labor work no problem to struggling to make it through the day working for someone now as a accountant doing extremely easy work. 

 

This virus is f#cking crazy and the medical field has no idea about it because anyone with extreme cases die, wont come forward to test or if they do they aren't believed anyways. 

 

Sorry for long post i've been waiting 15 years to get this off my chest. Thank you. I wish u all the best.  Consider valtrex 500mg every day religiously even if u dont have any symptoms.  That means it's working don't stop taking it

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4 hours ago, Papercut said:

Im in canada tested positive in blood for anti bodies while on valtrex 500mg daily

Hi I'm just curious if you had a positive swab to test positive ehile on valtrex? Did you know that you where exposed or did u have an outbreak and took the blood test? I'm on my 5th month and neg bloodtest. I haven't taken no meds and did a western blot at 17 wks post exposure with neg. I just know something isn't right. I plan to do another wb at the end of April it'll be 6 months I've read that's when the wb is really 99% accurate 

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13 hours ago, Tone12 said:

Hi I'm just curious if you had a positive swab to test positive ehile on valtrex? Did you know that you where exposed or did u have an outbreak and took the blood test? I'm on my 5th month and neg bloodtest. I haven't taken no meds and did a western blot at 17 wks post exposure with neg. I just know something isn't right. I plan to do another wb at the end of April it'll be 6 months I've read that's when the wb is really 99% accurate 

Never had a swab done usually tell them I have it pull it out and they just write the script.  But for me it isn't like normal herp. Im not circumcised so I think that may have to do with the appearance. 

Before starting valtrex

I get tingling before an outbreak and then it just erupts with painful swelling and lesions everywhere on my shaft. Also my scrotoum gets insanely itchy as well.

Recently got it on my face,  tingling burning,  I sing at work in my head " my lips are on fire eeee" but as long as I don't let my lips get dehydrated I don't get cold sores thank good (only had two in my life).

You can't mistake the tingling and burning, I got it from this chick that I should have know better.  She wasn't a hooker or anything but she was living in a rough area in a rough life,  but we met at a bar and hit it off.  When she said not to go down on her, cause she doesn't like it,  I should have know something was up.  Stupid me.  

The outbreaks for me have recurred minimal for abit but two years ago were so bad every month non stop I had to go on valtrex. It has stopped outbreaks very well but I still get fever and facial redness and tingling which take alieve daily to control. Also still get genital tingling and scrotal itch and sores. 

I knew it was herp from second I saw and felt it.  I just literally did blood work last week for some strange reason, I guess to bring closure sort off.

10+ years with it. valtex on and off up until maybe a year ago then everyday since sometimes even 1000mgs. Tested positive last week. Also gave it to my partner as when I first got it , it did not look like typical herpes. It does on my wife that's all I can say.

She only gets usually one outbreak a year.  She has no other physical or mental problems that this shit can cause. For me depression and aniexty were very bad. Once I embraced I had it only depression once in a while but aniexty almost gone completely. 

 

It's hard but you have to make the most in your life out of what u have to work with and do and eat things that give u the upper hand to stay healthy all the time!

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  • 2 months later...

Hello, I also get tingling and muscle twitches all over my body. My butt constantly hurts. I never had back acne in my life until I got this virus. I get red pimples all over my back, my genital area constantly itches, my legs feel very weak when I'm in resting position. I have been to countless Dr's and they dont know whats wrong with me. It is for sure HSV1. I have tested positive for HSV1 but have had cold sores since I was a child. Negative for HSV2 and all other stds. I believe I got this other form of herpes from an Ex.

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On 3/28/2019 at 3:47 AM, Papercut said:

Hi guys,  sorry for jumping in.  Nice to see a forum that is active recently.  

I have hsv had to diagnose myself as my doctors that I went to see were all retards and didnt know what I had.  Just have creme for fungal and said to wash better.  I told them are u serious i've been washing myself for 30 years never had a problem.  They are so clueless on what hero can cause. 

From a blow job i'm sure of. Rash pimple like then went away.  Never to return for 6 years with any symptoms other than felt like traveling up gi track.  Burning on and off and constant vomiting mouthfuls after eating anything. 

Then later in life

genital area with with lesions tingling fever etc. 

After treatment with cream only it felt like virus was moving to different parts of my body.

Legs were glowing red accompanied with high fever. Then three months later same thing arms glowing red with fever as well. 

Again short time after face red blotchy with fever and tingling pain. Then red on scalp to the point my hair dresser said something so I knew at this point I wasn't imagining shit anymore like all the doctors insitsted I was. 

Tingling and crazy crazy sweats, extreme heat intolerance (cold weather and air I find help) trouble breathing,  inflammation around eyes and face puffyness, upper cheeks below eye across nose to other side red as fire but would come and go rapidly. I couldn't think at all or answer simply questions properly or even think or ACT  normal.  I felt like a crack head  and was acting like a crack head (no i have never tried it.  I come from a good European home with excellent hygiene and nutrition) Nausea and vomiting slightly after eating. Fatigue sore joints,  loss of strength. 

Doctors said aniexty I said bull shit.  

Told them I want valtrex now I had enough. 

After about three months all symptoms have reduced dramatically I wish I had started one a day valtrex 500mg early to stop the spread.  Im experimenting with two 500mg doses as I still get the odd sweat during the day still and facial and genital tingling at times.  

I did try stopping valtrex once to see.  Everything flared up right away. 

I don't wish this on anybody. 

I believe I have had it for 15 years now and it ruined my life in top level sports. I was ohl hockey player and it affected me so much physically and mentally I had to stop playing sports.

I went from running my own construction company doing labor work no problem to struggling to make it through the day working for someone now as a accountant doing extremely easy work. 

 

This virus is f#cking crazy and the medical field has no idea about it because anyone with extreme cases die, wont come forward to test or if they do they aren't believed anyways. 

 

Sorry for long post i've been waiting 15 years to get this off my chest. Thank you. I wish u all the best.  Consider valtrex 500mg every day religiously even if u dont have any symptoms.  That means it's working don't stop taking it

So sorry...but to clarify, the virus has cause nausea, vomiting, extreme fatigue, and joint pain all the time? How about head aches? 

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Just now, Papercut said:

Ya buddy. Unless I have another virus as well.  It comes and goes.

Wow. I've only had this virus since September of 2018. Have been missing so much work and other fun bits of my life due to some of rhe same things. I assumed it was a thyroid problem and just went to get blood work done yesterday to find out. That's crazy you share the same things.

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1 minute ago, Shortcake said:

Wow. I've only had this virus since September of 2018. Have been missing so much work and other fun bits of my life due to some of rhe same things. I assumed it was a thyroid problem and just went to get blood work done yesterday to find out. That's crazy you share the same things.

Know what triggers it and try to limit it. For me heat, stress and intense workouts.  Get on a good dose of valtrex 500 or 1000mgs for three months send reevaluate after that. Good luck buddy. It does get better after your body builds resistance. You need to eat and be healthy. Limit alchohol and the rest of it as well. 

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On 6/13/2019 at 9:22 AM, Kurtisfleming said:

Hello, I also get tingling and muscle twitches all over my body. My butt constantly hurts. I never had back acne in my life until I got this virus. I get red pimples all over my back, my genital area constantly itches, my legs feel very weak when I'm in resting position. I have been to countless Dr's and they dont know whats wrong with me. It is for sure HSV1. I have tested positive for HSV1 but have had cold sores since I was a child. Negative for HSV2 and all other stds. I believe I got this other form of herpes from an Ex.

I have the same symptoms in the butt and acne on the back.

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  • 9 months later...

I've also experienced the same symptoms that many people are discussing here. It started out as a mild tingle that worked its way posteriorly. It started to feel like i had a golf ball between my legs, even though the doctors said it looked fine. I also developed a cough and coughed up a lot of sputum around that time. It then started to wake me up in severe pain in the middle of the night along with night sweats. I took every pain medication on the market with no effect. Eventually I went to the ER and was checked out and tested. The IGG/IGM serum tests showed me as negative both at 3 weeks post infection and 3 months post infection. When I went to the Doctors, they kept telling me that I didn't have anything, especially because I never had any of the typical herpes sores. For the past few months, the pain has transitioned from an intense penile pain to a dull perineal pain, along with nerve tingles down the left leg, joint pain, and fasciculations. I had every test done; cystoscopy, colonoscopy, and multiple STI tests. Everything came back negative. Until finally I received a positive test with a urethral swab HSV-2 test, which finally gave me answers... although not the one I wanted. Blood work was also done at the same time to test for HSV-2 and came back negative.

I think that because the virus enters the nervous system, it managed to infect and has been damaging the nerves. Either that, or has caused an autoimmune response. As for why I'm still negative in the blood work, I think it might be due to the time it takes to be seroconverted or that this is an entirely different strain of the virus that can't be detected through the routine blood work available right now. I'm posting this now because I think more focus needs to be on herpes right now. It's not just a mild skin lesion that goes away. It can be devastating both physically and emotionally.

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  • 4 months later...

Glad to find this thread. I posted a question about my situation yesterday prior to finding it.

I got herpes 28 years ago. The woman I got it from would have really bad outbreaks, but that has never been the case for me. The few outbreaks I had were just a couple of little pimples and they would go away quickly. Over the years it happened less and less and until a couple of weeks ago I hadn't had an outbreak in at least a decade, maybe 15 years.

Two weeks ago yesterday both of my legs started feeling like they weren't getting enough circulation. I had numbness, pins and needles combined with aches and pains all through both my legs. At the time I didn't realize I had an outbreak and even when I realized it, I was unaware that this could be related to herpes. It was quite terrifying.

It's baffling to me that I could have these symptoms, never having anything like this before and after the virus has seemingly been dormant for so long.

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  • 4 weeks later...

I don’t know for sure if I have HSV but I am 99% sure I have it despite negative blood tests. I have tested for everything else, including thyroid, celiac, B12 deficiency, autoimmune diseases like lupus. 

Sometimes I wake up with pins and needles in one arm or leg when I am NOT in a bent up position (like I know it happens when you sleep on your stomach with your arms above your head). This will happen several nights in the same extremity and then aching dull joint pain in my knee or hip or elbow, then an outbreak on my butt on the same side of the body. It’s freaky.  Obviously those could individually be 100 different things but the pattern and cyclic nature of it makes me think it’s related to these red bumps/blisters. 

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  • 3 weeks later...

Hello, 

I had almost constant full body nerve pain for the past three years...started right after my herpes diagnosis. I recently read Dr. John Sarnos book on the mind body connection. It clicked with me and I have been practicing his tips for the last week or two and amazingly I am pain free except for occasional pain which I can get under control pretty quickly. 

I highly recommend looking into the mind-body connection and the role of unprocessed trauma and emotions. I really thought I had dealt with the things in my life but didn't. I was the strong one who could handle anything...but the nerve pain kicked my ass and made me reassess. Dr. Sarno has great information as well as Nichole Sachs who has a great podcast and book as well, I think. I'm sure there are others too. It's amazing how powerful the subconscious mind is and what it is capable of. 

I hope you all find healing and peace! 

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  • 4 months later...
On 10/2/2020 at 10:23 PM, TreeHugger44 said:

I don’t know for sure if I have HSV but I am 99% sure I have it despite negative blood tests. I have tested for everything else, including thyroid, celiac, B12 deficiency, autoimmune diseases like lupus. 

Sometimes I wake up with pins and needles in one arm or leg when I am NOT in a bent up position (like I know it happens when you sleep on your stomach with your arms above your head). This will happen several nights in the same extremity and then aching dull joint pain in my knee or hip or elbow, then an outbreak on my butt on the same side of the body. It’s freaky.  Obviously those could individually be 100 different things but the pattern and cyclic nature of it makes me think it’s related to these red bumps/blisters. 

How long have you been experiencing this? @TreeHugger44

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Im not sure if anyone who has been contributing to this thread is still active, but im wondering if there has been changes to your HSV statuses over time? I experience the same soreness, tingling sensations, NO SORES/BLISTERS, in the same areas but have been tested negative for 9 months straight until last week when it was "equivocal". These symptoms started in April, 2020, the morning after our encounter.

 

My partner, who gave me a possible exposure in this case, told me their gyno has tested her for negative in everything 2-3 weeks ago. Now i know, some gynos or any doctors dont really test for all STDS, but Im not sure if this is just a slow race for a HSV 2 positive result or something else?

 

I am aware false positives exist, and during this encounter I have cut my penis due to no lubrication (minor cut).  But my results came back as 0.93 last week and the doctor recommended me to wait for another 6 weeks for a retest. Im just confused because its been NINE months. In December, i was negative. 

 

These symptoms have been non-stop for me, ranging from high-pain levels to tolerable. I just hope someone from this thread sees this, and has had a change in results over some time (10 months or 1 yr plus). 

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Unfortunately, I don't have any advise for anyone but I would like to contribute to the thread.  I was married for 5 years to a woman with HSV2.  She disclosed and I knew the risk.  After 5 years our marriage ended and I tested to see if I had contracted.  It should be noted I had never had an outbreak that I was aware of.  Well I tested neg via IGG test.  Then about 6 months later I tested again via IGG and was still negative.  I remarried and my wife did a complete STD panel.  She was negative for HSV 2 and all other diseases.  Jan 20 I had the Covid vaccination and BAM a major outbreak.   I guess I had it all along and when my immune system was loaded the virus took advantage and became very active.  It was a really bad experience.  Lots of blister and lots of nerve pain down my right buttocks and right leg.  Blisters were abundant in genital area.  1 month out and I am better but still having issues.  My itching is gone.  My tingling is also sort of gone.  But my leg nerve pain down back of right leg persists.  Also I have severe fatigue.  Like I will feel ok and then I just crash.  Like so exhausted I have to lay down immediately. Also I get dizzy when this happens.  I do think I am slowly getting better but it is frustrating to go from being so healthy and active to a person that struggles to get through the day.  I would really appreciate hearing from people that have gone through this and come out the other side.   Like how long does it typically take to begin feeling completely healthy.   Does the leg pain eventually completely resolve or does it continue off and on for years.    Should I expect the leg pain to comeback for my next episode?   I just wish people would contribute their stories (good and bad) so some of us know more what to expect.  

Finally I will end with this.  This is just one person's opinion but I believe this to be true. I have a little more understanding of the science than some and I'm sure less than many others but....  I believe they have turned the corner on this disease and it will be cured within 5 years.  If they stay on track they go to human trials in 3 years.  I looked back at what they were doing 10 years ago in research and it wasn't until fairly recently that they began thinking they could cure it.  In mice trials, one year ago they were only killing 21% of the virus.  Within a year they are up to 92%.  About 2 years ago, they could neither find it or kill it.   This combination of mega nucleases it cutting it up so bad it can't "self repair."    Guys, we will not grow old this disease.  I just think it will be solved.  At least I hope and pray for that end.

Best of luck and please reply if you have information to contribute. 

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