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Peacepleez

Poll: Neuropathy sufferers

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Peacepleez

I wanted to know (unscientifically) how many of us suffer from neuropathy.  It seems like only 1-2% of HSV patients have this by some sources.  Can you chime in if you do suffer from neuropathy and how long.  Unfortunately, no ability to create a "poll" on this website so it'll require responses.  Maybe we can tally in the end.  The hope of course is that something like the Theravax will help alleviate symptoms.  Thanks!

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SureWhyNot

I had gHSV2 for 33yrs without neuropathy or prodrome symptoms. I now have had both symptoms on and off for the last 3yrs since starting to get Sacral OB's. When I get the right supplement for my body it goes away within hours and stays away until I eat or supplement the wrong thing.

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Seeker1960

I was infected 1 year ago and have had neuropathy for the entire time. It was worse in the beginning but still is a constant reminder that I have herpes. I really think I could deal with the occasional outbreak rather than this constant burning. It does calm down at night for me at night so that I can sleep.

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Peacepleez

I guess the fact that so few have posted about neuropathy here means either that it is not a common problem for most GHSV sufferers or there isn't the critical mass on this site regarding this problem.  For the severity I suffer from, I guess I'm thankful others aren't as debilitated by neuropathic pain.  It's a constant reminder in my daily routine.  It makes thinking of the future hard if this is how it's going to be for perpetuity.  I was hoping that others who are suffering like me (6 months continuous neuropathic pain unabated since diagnosis) could shed some light on where this goes with time.  Please write about your experiences.  I understand the herpes stigma, OBs, risk of asymptomatically transmitting to others BUT constant pain is a whole other dimension unexplored, frustrating, and so defeating....i never knew

Edited by Peacepleez

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Hansje

I don't know if the pain I often experience is neuropathic. It is a deep pain that starts in the hips, kind of sinks into the legs, and after that my arms join the pain party. It is a pain together with a tremendous heavyness. In my case a shot of hydroxocobalamin (B12)  helps a lot. For about a week, in stressfull times less than a week. Without these shots I would crash. But I don't know if this pain is (partly) herpes related.

 

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Peacepleez

Bump again. Those out there. Please share. Looking for similar experiences and coping mechanisms. Thanks

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LillianPanos

Exercise is a great reliever for me. I can blame the pain on it. Also its seems to minimize the pain as body in constant motion when exercising etc. Heating pad. Ice packs and epson salt baths

Maybe consider doing a survey not sure site will allow for that

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Theblues

In my 25 years, I've tried just about every sort of natural and medical intervention. I currently take Panadiene Forte on those days when the pain is minimal and Tramal when I'm having a tough day. I realise it's not an ideal way to live but I've been ground down by time and having 12 hours complete respite from a drug has helped me to retain my sanity. I do wish I had something more positive I could add to this conversation but this my reality. 

I'm a great believer in Bill Halford's vaccine so even though I'm all the way over in Australia I'll be making my way to wherever it's available ASAP. 

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Free73

If you suffer from nerve issues, then you should be doing massage. Forget about natural potions and lotions.....waste of time and money. Have a regular remedial massage (not too vigorous, but vigorous enough that you are releasing tension through your body)

 

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Theblues
28 minutes ago, Free73 said:

If you suffer from nerve issues, then you should be doing massage. Forget about natural potions and lotions.....waste of time and money. Have a regular remedial massage (not too vigorous, but vigorous enough that you are releasing tension through your body)

 

 

I can see where you are coming from but I'm not too sure a regular remedial massage will alleviate where I'm feeling my pain. Also at times my pain is akin to someone holding a lit cigarette to my skin and it's virtually impossible to just switch off and ignore it.

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Seeker1960
11 hours ago, Peacepleez said:

Bump again. Those out there. Please share. Looking for similar experiences and coping mechanisms. Thanks

I have been on this site have met many who have had neuropathy attributed to their HSV infection. James39, Berliner, EM424 and many others that have pased through. Part of it is when soneone says they get PHN from herpes they get practically attacked by those who swear it can't be. I've had to defend myself over this topic more times than I can count. So most of us in this minority look for answers and then move on then deal with it the best we can.

Trust me there are alot more people who are dealing with this as we are but they either have stopped visiting here or dont know about here.

Edited by Seeker1960

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Free73
2 hours ago, Theblues said:

I can see where you are coming from but I'm not too sure a regular remedial massage will alleviate where I'm feeling my pain. Also at times my pain is akin to someone holding a lit cigarette to my skin and it's virtually impossible to just switch off and ignore it.

The central nervous system works as a whole, not just in parts. When you get the blood flowing throughout your body and you release tension, then it benefits your whole body. Trying to attack the single point of what you might think is the source is impossible.

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Seeker1960
3 hours ago, Peacepleez said:

Do u think the vaccine will help resolve this?

If you read what is being reported by Vaxxer and a few others. Theravax may greatly reduce neuropathy. So I am hopeful that if the vaccine comes through it will help us tremendously 

Edited by Seeker1960

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Guest Trying to cope

Hi all, 

I was diagnosed 2 months, one week ago. I am 45, female. Had groin pain, leg pain, buttock pain among many other symptoms, from the start. My immune system seemed to be kicking in and the pain getting better about three weeks ago, but then the skin on my entire body went numb, so I had to get a cortisone shot because they thought it was a drug reaction to tegretol, which I had been taking for the pain. It turns out that I think the skin numbness is probably hsv. Well, immediately after the shot my immmune system bit the dust and the pain has been spiraling, getting worse and worse each day.  It feels like it's getting so severe that the nerves will not be able to recover.  I had been self medicating with oxycodine which wasn't great for the pain at all. Today I called my GYN and told her please help I think I'm developing severe neuralgia. I read about some studies that say that starting amitryptiline at the same time during the acute outbreak as acyclovir may prevent neuralgia in patients who have had the disease less than three months. My GYN called in a prescription for neurontin today because she thought it was better, and within 2 hours I have some relief. The pain is still there but feels better. Apparently it can take 2 to 3 weeks to really kick in.  I don't know. I wanted to share this with others just to say it is giving me some relief and it or amytryptiline might really help others who are in the very early stages, combined with an antiviral.

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Guest Trying to cope

Also, I wanted to add that these meds are supposed to be good for chronic sufferers, too. I wonder if over time, they could help preserve nerve function in everyone. 

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SnowAngel
4 hours ago, Guest Trying to cope said:

Hi all, 

I was diagnosed 2 months, one week ago. I am 45, female. Had groin pain, leg pain, buttock pain among many other symptoms, from the start. My immune system seemed to be kicking in and the pain getting better about three weeks ago, but then the skin on my entire body went numb, so I had to get a cortisone shot because they thought it was a drug reaction to tegretol, which I had been taking for the pain. It turns out that I think the skin numbness is probably hsv. Well, immediately after the shot my immmune system bit the dust and the pain has been spiraling, getting worse and worse each day.  It feels like it's getting so severe that the nerves will not be able to recover.  I had been self medicating with oxycodine which wasn't great for the pain at all. Today I called my GYN and told her please help I think I'm developing severe neuralgia. I read about some studies that say that starting amitryptiline at the same time during the acute outbreak as acyclovir may prevent neuralgia in patients who have had the disease less than three months. My GYN called in a prescription for neurontin today because she thought it was better, and within 2 hours I have some relief. The pain is still there but feels better. Apparently it can take 2 to 3 weeks to really kick in.  I don't know. I wanted to share this with others just to say it is giving me some relief and it or amytryptiline might really help others who are in the very early stages, combined with an antiviral.

Thanks so much for this info! I started Valtrex a month in and started Amitriplyn at four months. I'm praying that it helps! Keep us all updated please!  

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Malcolm

Yes I experience neuralgia approximately 20 of 30 days a months. The sensation is burning pain, stabbing jolts, and general hyper-sensitivity.

Edited by Malcolm

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realscience77
38 minutes ago, Malcolm said:

Yes I experience neuralgia approximately 20 of 30 days a months. The sensation is burning pain, stabbing jolts, and general hyper-sensitivity.

Very similar symptoms. Going on 2 years now. Seems like Ill have a week were I feel like I am almost back to normal physically then it repeats. 

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useless

I feel fatigue and neuralgia all the time the burning started a year ago but I can cope right now. The pain can be bare able but it's the fatigue that gets me. Plus recently I have been experiencing burning tingling throughout my body and my face. My eyes have been giving me problems too. Has anyone else experienced these symptoms. 

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SnowAngel
3 hours ago, useless said:

I feel fatigue and neuralgia all the time the burning started a year ago but I can cope right now. The pain can be bare able but it's the fatigue that gets me. Plus recently I have been experiencing burning tingling throughout my body and my face. My eyes have been giving me problems too. Has anyone else experienced these symptoms. 

Hey could you tell me how long it's been since you've gotten H? Do you have regular OBs too? Many people on here do get the burning and tingling. My burning is mostly in my vulva area but I do get a pain down my leg some days. 

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useless

I was first diagnosed in 2008.font really have outbreaks anymore just the other symptoms I mentioned. 

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