Pudental Neuralgia: I have had PN for... - Pelvic Pain Suppo...

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Pudental Neuralgia

trishj46 profile image
54 Replies

I have had PN for 9 years now, have done & tried everything that is on these sites. Every imaginal med. Wanted to know if any one else takes what I am taking. Am on steroid & lidocaine compounded suppository. It gives me some relief, and I run for it when I am in real excruciating pain & burning every where. I am neverv with without pain un but this helps some. I know it has a lot of side effects, especially weight gain. I worry sometimes about staying on it. What the long term effects can be. But I am 72 and I feel it may be dumb but I cannot give it up and suffer this hell! Anyone else use this as last choice? Before getting on it I was getting suicidal from such horrific pain! Hugs to All! trishj46

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54 Replies
Bradfordjoiner profile image
Bradfordjoiner

Hi Trish

Keep your head up and keep going your doing well keep looking for the cure I’m sure you’ll find it .....all the best with this evil ailment

Susiebic profile image
Susiebic

Trish, I am 70 and have suffered for 10 years. I did not take meds. Because I was still managing to work until 3 years ago. I had entrapment surgery 4 years ago with 60% relief. It gave me hope to keep going. I make suppositories out of CBD and small amount of THC. I use one every night without fail. I also use something to sleep. Recently I found a Chiropractor that does foundational work on my spine and pelvis. He has reduced my pain to a 1. I cannot believe this myself. I have tried so many therapies, internal and external and this man is a genius.

Have you had surgery? I am pro surgery because if the nerve is trapped, no amount of meds or intervention will help. I also use a product called MAG 07 for bowel care. Very important because the bowel is close to pelvic structures that can cause pressure and pain.

I have to say I hesitate to tell people my story because it seems nobody listens. Where do you live?

Konagirl60 profile image
Konagirl60 in reply toSusiebic

I read every word and I listen. I was just like you.....I am pro surgery for the same reasons....only surgery works for a truly compressed rear pudendal nerve branch that is stuck to fascia and overused ligaments. Was your rear branch caught in the intraligamental grip? ...or.....was the nerve pinched in your Alcock’s canal?

Where did you purchase the Mag 07? What does it contain? Thank you!

Susiebic profile image
Susiebic in reply toKonagirl60

Konagirl

I think you are the only one who does respond. My injury was an impact injury and it involved the entire nerve in the alcocks canal. I had pain from mid thighs to waist through all of pelvis and perinium.

The Mag 07 can be purchased on Amazon. Also Nutritional Brands. All magnesium and potassium citrate.

Konagirl60 profile image
Konagirl60 in reply toSusiebic

How have you noticed the supplement working? More energy?

Thanks.

Did you fall skiing or off of a horse? Yikes....I’m sorry you hurt so bad to. I’m glad you got 60% relief of pain.

My own would have been close to 100% relief BUT DOCTORS left metal Filshie clips that had migrated into spots tha cause chronic pain...they dismissed me from day one. One was on my rectum for nine long years....the flare ups were awful.....I have suffered. Slowly, I am trying to calm my sympathetic nervous system.....it was left agitated for way too long.( the pain was so bad I could not breathe normally....I eventually lost cognitive function.

Susiebic profile image
Susiebic in reply toKonagirl60

It works for my bowels

Konagirl60 profile image
Konagirl60 in reply toSusiebic

How?

Susiebic profile image
Susiebic in reply toKonagirl60

It is the only thing that if used regularly keeps me regular. It does not cause cramping. It can be used as just a cleanse, but I use regularly. 2 caps in the morning.

Konagirl60 profile image
Konagirl60 in reply toSusiebic

Oh, I see.

I have the opposite problem. I leak stool because rectal nerves have been injured due to being left compressed for 3.5 years.

The quantity I lose depends on how much I walk, sit, drive, lift, and I always do better resting with my feet up. I still have pain that requires medications three times a day.

I sat on a padded toilet seat for years....the weight of carrying it everywhere caused my right elbow to swell and tendonitis to come back. ( I’d carried a very heavy La Leche breast pump to work and home when I’d had my son by C-section, in 1990 ). I’m now sitting on a Spoonk reflexology seat. It’s lightweight. My right arm is finally healing!

Aloe Vera juice can help with constipation.I’m glad you’ve found what works for you.

Debra13 profile image
Debra13 in reply toSusiebic

Konagirl. Same here. I take 2 in the am. It definitely helps keep me regular especially with all the medications. Deb

Debra13 profile image
Debra13 in reply toSusiebic

Me too. I take 2 every morning and stool softeners. Deb

Debra13 profile image
Debra13 in reply toSusiebic

Please my name is Debbie been suffering for 17 years + now with Pudendal neuralgia and last December I was diagnosed with interstitial cystitis. Please tell me this amazing chiropractor is not far from New York. I hope to hear back from you. Thank you and lots of positive thoughts and thank you for the hope. Deb

Susiebic profile image
Susiebic in reply toDebra13

Sorry, is near Phoenix, Az.

Aryah profile image
Aryah in reply toSusiebic

Who is the chiropractor in Phoenix? I live her and have not had any relief from pelvic and rectal pain for the last 3 1/2 years, although not for lack of trying. I see dr Castallanos here but have not heard of a chiropractor helping. What do they do?

Susiebic profile image
Susiebic in reply toAryah

Dr. Zachary Wells

He is off Carefree highway

Did you get my info on the suppositories?

Remember I had surgery and only had 60% improvement, but that was enough to give me hope. My management of the remaining pain is not just one thing. I use suppositories at night. Chiropractic from this chiropractor is the only one that helped. I have gone to others and they made it worse.

Aryah profile image
Aryah in reply toSusiebic

I didn’t. I found the foria brand in California, so my mom is going to get them and send them to me. What type of manipulation does he do?

Susiebic profile image
Susiebic in reply toAryah

I wrote out exactly how to make the suppositories. Maybe it is not allowed. I am not aware of the brand you are getting.

My chiropractor only gently manipulates my spine to open it up to promote circulation and healing. He works with balancing my pelvis as well. I work on keeping my bowel clear as it can put pressure on the pelvic area. All of these things make my pain minimal.

Aryah profile image
Aryah in reply toSusiebic

Do you live in the Phoenix area? It would be nice to meet someone who is also dealing with this. I am in central Phoenix.

Aryah profile image
Aryah in reply toSusiebic

How much cocoa butter do you use? Is it food grade? Can’t find the suppository in California, only Colorado, so I’ll try your recipe.

Susiebic profile image
Susiebic in reply toAryah

Go online to Amazon and get pure coco butter. It comes in chunks. Melt it down in a glass measuring cup to make 2 cups liguid. I put the heavy glass measuring cup in a pan of water. Don't get water in oil. Add other ingredients. It will disolved in oil, just have to stir until all melted. Don,'t boil it. Pour into molds and refrigerate. Just be kept in refrigerator when done. I have been doing this for 3 years. I have had no problems.

Let me know how it goes.

Aryah profile image
Aryah in reply toSusiebic

I ended up having my mom get me two kinds from California. One was 40-1 cbd to thc and the other was 1-1. Neither seemed to do anything. Did you have to use them several days in a row to get them to work or was it immediate? It’s so frustrating the idiosyncratic nature of this illness. Also, what was the name of the cal mag you are using? I’ve used aloe Vera tablets for years, but lately they are causing diarrhea. Not sure why. I haven’t had time to look in to the Pt you use. It is pretty far from me. I am in the Biltmore area. If you’d like to get together sometime let me know. It would be nice to meet someone going through the same thing. Thanks for your help.

Yacoub profile image
Yacoub

I have never used what you are taking! Why do you say,"as a last choice". Beside the weight gain is there any other reason not to use? I am 63 and after many major surgeries in a short period of time I'm .. as they say "sick and tired of being sick and tired". I honestly would be willing to do anything to not have this pain. I have also thought this is no life, it would be so much easier to just die and be done. I'm so sorry to hear you have felt that despair as well. I'm going back to my Colorectal Dr again next week and will ask about what you are using. I def don't need the weight gain!! I had lap band and lost but they are not forthcoming in the fact that 60% gain it back, even though still occasionally throwing up. Weight gain would be so depressing, but at least not painful. Please hang in there and just continue to endure. Something has to be out there!! So many have tried so many approaches without results. Seems I have already done all of them. Does tend to leave someone lose hope. This is a constant HELL I just can't take it anymore. If I find anything I will scream it from the rooftops!! Take care of yourself as best you can. Please don't give up. All of us here are in the same boat and are always here to at least listen and hopefully some comfort.

trishj46 profile image
trishj46 in reply toYacoub

I have had everything you ladies mention. It is a last choice for me. I also have spinal cord injury with neurogenic bladder and bowel. So PN is not my only problem! I have to self-cath

and dis-impact myself! Pain is HORRIFIC!!!! so I will go with some weight gain! I'm glad your getting relief with surgerys! I have had enough of them! Good Luck!!!

Mascaro profile image
Mascaro in reply toYacoub

To all of you in despair. There is always hope. I have PN and have not written here in a while. I never knew that sitting was a luxury till I got this horrible disease that I had never heard of. Fuck you PN! That is what I scream in my head. The good news is that I have been managing to do ok for a bit now. I am on Lyrica, Cymbalta, and marijuana. I did a couple RFA treatments as well. I have done a lot of stretching and exercise to try and get blood flow to the area. I have also done much self talk and prayer! Believe!!! There is always light.

Konagirl60 profile image
Konagirl60 in reply toMascaro

Faith does go a lot no way.

Aryah profile image
Aryah in reply toMascaro

How do you take the marijuana? I have heard of suppositories, which my mom can get from California for me ( I’m going to try them after she gets them). I did cbd, but had no relief. I’m really susceptible to the psychotropic effect of thc. I also tried a tea, but the dosing was so tricky and the last time I hallucinated. Not super bad, but enough to freak me out. I live alone.

Mascaro profile image
Mascaro in reply toAryah

I take a low thc strain. It is an oil. I do exercise and stretch which helps as well. Positive attitude helps. I also use a standing desk for work.

Yacoub profile image
Yacoub in reply toMascaro

You and Knonagirl60 are so informative. I tried CBD Cream that can not be used internally so it doesn't "absorb" clear up to my Levator muscle. Levator Ani is my situation and it has for 5yrs cost me my life and my 37yr marriage. Stress, sitting and standing make this feel like I'm trying to deliver a Tangerine through my butt. I have Degenerative Disc Disease also so I have had , 360 lumbar surgery, total right hi replacement 2nd back surgery, knee replacement, while other knee is now bone on bone. Even when I have to go to a Hosp for someone else I start to have a panic attack just from the smell and memories. But since I take Hydromophone once (time released) and hydrocodone and Valium for spasms. I have been on all for so long it barely takes the edge off. I've been to Urogyno, GP, gyno, a Dr that used electrogalbanic treatments once a week for 5 weeks.. colonoscopy really just everything y'all have taken or used. I feel my heartbeat in my butt from the minute I get up until my medically induced sleep takes over. I too have had sucicidal thoughts, it's so unbearable. On disability for yrs, can't travel. Sometimes have to lay down in the backseat for my ex to drive me to Dr after specialist..physical therapy internally for a yr. Question God, you name it. Sad to hear how many of us are suffering so much. Lidocaine cream inserted, Botox shots. Can't list any more, to bore everyone and myself! My pain management has said if she could give me medical marijuana she would. My holistic person says that CBD will not help as it takes the THC in it to help with the pain. The drugs cause constipation, nightly, prunes, Miralax, Amitiza, suppositories! The Levator Ani continues. I pray God haven't been thru enuf with all the surgeries and the bacterial infection called Actinomycetes Israelii, which took 8weeks of Amoxaclav thru a pic line then orally for 12 months. Now Levator. I hate pot it makes me paranoid, not legal here, oh frickin well, but if I come up positive on a UA @pain management, they will stop treating me. I really feel hopeless. Sad for y'all to be in pain, yet you understand it helps to know your not alone. I guess I'm really just ranting. Any advise? I live in Texas and even though my name is male I am Rebecca. I wish us all to finally be rid of this pain. Thanks for reading sorry so long. God help us all. It just makes you feel so alone, house bound, sometimes bed ridden. I'm 63, but my spirit is so much younger. I want so bad to play with my grandchildren. My youngest grandson doesn't even remember me when I was well. Now God has blessed me with my first granddaughter. I want to be well for her. Again thanks for reading this book!

Debra13 profile image
Debra13 in reply toYacoub

Please all of you hang in there. I’m gonna share something with you all now. I’ve been suffering for almost 18 years now. In 2003 I had enough. I couldn’t take it anymore. Back then I was diagnosed with vulvodynia. No doctors knew what this was and many times I was told it was in my head. I thought I was going crazy but I knew the pain was real. I became a very bitter and angry person and didn’t like me anymore. So on July 31, 2003 I took an entire bottle of elavil and a half a bottle of Zoloft. It was a very hot night and I wasn’t this person. I had a great family, a beautiful career as a physical therapist and people that loved me. I just couldn’t take this pain anymore. So I drove to a secluded spot and did it. My dad had just lost his mom that same week and he called me and I answered the phone and he pleaded with me. So I told him where I was. But it was too late. By the time I got to the hospital I became catatonic and they began to pump my stomach. My parents and loved ones were told they wouldn’t know if I would make it. They would have to see how the next 24 hours goes all my organs were failing. I spent 7 days in the cardiac care unit. When I finally did wake up my dad and mom were by my bedside and the first thing I said to them is am I dead. My dead said you almost were and he began to cry. Here is my point. That person did die that day and I swore from that day on I would never give up again no matter how bad it gets and we all know how bad it can get. I said to myself when it hurts I’m gonna force myself to get out of bed. Unless it’s extremely necessary to lay down. I won’t let this beat me ever again. I’m too strong for this. So please when it gets bad realize this. YOU ARE NOT ALONE. listen to the song stand by rascal flats it does help. Do whatever you have to to get your mind off the pain. Call someone. Get up. Color. Read. Take a sits bath and paint your nails at the same time. Write in a journal. I keep one everyday. But don’t be me in 2003 scared and tired and had enough. Remember hope stands for HANG ON PAIN ENDS. I hope my story helps some of you. God bless us all we deserve to be cured. Thanks for listening. Deb.

Aryah profile image
Aryah in reply toDebra13

Thank you for your words. I’ve been in that place as well. I have had this pain for almost four years, not as long as many of you. The first year I did nothing. Just was home and in pain. Then I started volunteering and getting out of the house. They bought me a standing desk so I could work. This year I decided I was tired of not living, and I am somehow going to Scotland this year. I just decided that I was going to be in pain no matter where I was, but I know if I’m distracted, it is better, and wouldn’t it be better if I was enjoying something. I have no idea how I will handle it, but I am willing to try. I’m not being a Pollyanna. It could be awful. But I’m tired of living such a tiny life.

Mascaro profile image
Mascaro in reply toDebra13

Humbling

Yacoub profile image
Yacoub in reply toDebra13

Thank you for sharing, your so brave. I'm glad your ok and I know those who love you are so so grateful. As a physical therapist have you seen the deep tissue massage one does with the elbow for Levator Ani? Do you think that would help me? I don't think it would have an affect on Vulvodynia though. I had a Urogyno give me that diagnosis also, turned out to be the Actinomycetes Israelii I talked about in my text. Was found by my GP, after 4 different kind of Dr.'s. So I was sent to an Infectious Disease Dr and began the Amoxaclav pills, then pic line 4'xs a day I did at home and then more pills totaling a yr. it stopped the pain. It's a vaginal swab test sent to a special lab. A possibility for you maybe. My org. diagnosis was wrong. Worth a try. 🙏🙏😘

April3 profile image
April3

I have had PN for almost 6 years. All I can say is Lyrica!!! I have tried a lot of medicines and procedures. The best things I’ve done is Lyrica, pt and finding helpful doctors and taking magnesium.

Well I've read all 12 replies,and seems to me we're all very similar but also so unique,because what works for one,does nothing for another.

I'm 75 and I've been dealing with this chronic pain now for 14-15 yrs. I won't go into all I've been through or had,but I will say I wish I knew then what I know now,as we all probably do. Firstly I wouldn't have put myself through all the painful tests I've had. I also would not of built up all the Meds I'm on. Temazapam,Diazapam,Pregablin,(Lycra) Mirtazapine,CBD Oil,and I'm still on all of them,plus Meds that are keeping me alive.

I've lost count on the amount of times I've said," this is no life" I haven't had a holiday for 14yrs.

BUT I am now seeing a Physiotherapist,and boy do I wish I had seen her 14yrs ago. I'm still in pain,but I believe after all this time,my body don't know how to react without pain. I have hope now I'm seeing my Physio,no drugs,no pain,just need to put a bit of effort into it. Physiotherapist for me anytime.

Sorry for the rant,but that's what chronic pain does to you.

Wishing you trish and all of you good health,and lots of luck.

HC99 profile image
HC99 in reply to

Hi Gemini I am also seeing a women's physio. Can I ask do you feel very sore and extremely fatigued after visits?

in reply toHC99

Oh yes I do. It's as though she has disturbed something. But you know the saying ,no gain without pain.🙄.

I seen my Physio last Tuesday,and I've suffered all week. But I'm just hoping that's because that's how it's suppose to be.🤔

HC99 profile image
HC99 in reply to

Does she do a lot of internal work ( sorry don,t know how to explain it any other way) The 1 I see seems to follow the methods of Amy Stein.

in reply toHC99

She does a lot of internal work on me because,as you probably know the nerves come from your spine. Well I have Osteoperosis at the bottom of my spine,if that wasn't so,she said she would work like mad on my back. She is very good with me,and she explains all what's going on.

I just thought I would add here,to me if she has to follow the methods of someone else,she can't be that experienced.

Every time I see my Physio,if I say there's been no change,she's always trying to think of ways to make me comfortable. We are all different so we can't all be treated the same way surely.

DCleary1953 profile image
DCleary1953 in reply to

I think you've put into prospective some things I wanted to say. I've been off this forum for a long time, lost my way to get back in, created another profile by mistake I realized, then, got frustrated and took another hiatas!!!

With all of that said and out of the way, yes, we are all so similar yet far apart in ways such as some of the meds. I posted an update on my sitation before I read your comment Gemini. So,hopefuly,if that is spotted first, this may sound a bit more clear.

Ihave several questions for you and any others if you can respond. So, maybe a couple at the time!

Question: Why was Lyrica prescribed, and what have been the benefits? And,

What other meds or things you have tried that have given any relief for PN? I also have severe left foot and leg pain consisting of extreme stinging. Lyrica was prescribed for this. I have been and tried everything under the sun. My medical stuff looks like a law library!!!! Thanks so much.

I hope this makes sense. I'm going to make sure my correct stuff is still here on the site. I feel as though I am starting all over again! !

Yacoub profile image
Yacoub in reply to

My God that's such a long time to be in pain!! Unbelievable, you are certainly a strong woman!!! So happy for you!

in reply toYacoub

No,I don't like to be called strong,because what other choice do I have.

No ones yet come up with any answers,otherwise this forum would be empty🤔

It's my poor hubby that has to put up with the tears.

I've now started tie chi,I've been advised it could be helpful,so we will see,and it gets me active.

Just wish you all luck.🍀🍀

DCleary1953 profile image
DCleary1953

What were you trying before? I had been on opiates but had to detox after three years. They never wrote an Opiate book for DUMMIES. I had absolutely no clue what I was getting into.

I have had PN for almost 5 years with severe left leg and foot pain after a simple partial hysterectomy. I thought it was one thing but the Mayo Cllnic said it was two chronic pain issues. I have a very lengthy medical history after this happened and basically feel as though I'm still back to square one. As you know, it is a day after day thing managing chronic pain the best way we can These doctors are clueless to this in so many ways.

I would love to try anything new for pain minus any additive drugs.

Also, I hope to come back to this site more often and continue to come out of this hole I've dug for myself. On here, we all share a common bond you can't find anywhere else. I'm now sixty-five and have finally come to terms with having to give up and retire from my teaching career I loved. I have posted all of this before on here, but I've got to familiarize myself again in how to navigate through the site.

trishj46 profile image
trishj46 in reply toDCleary1953

Yes, I can appreciate all you say and feel I was 64 and retiring from nursing when all this hit. This PN has affected every part of my body. It is horrific nerve pain mixed with spinal cord injury.

I have tried every med and right now I take percocet. I talked about the compounded steroid of hydrocortisone & lidocaine which can take the edge off. I gained weight on it. I cannot

take every day as I will get use to it and it will not work. I feel for you and anybody feeling what I feel!! Good Luck! Sending you prayers & Blessings!

trishj46

DCleary1953 profile image
DCleary1953 in reply totrishj46

How long have you been on this site? I'm trying to figure out how to contact an administrator to straighten out a blunder. I mistakenly created two different profiles.

The second was made after I came out of a place to detox from that crazy medicine. My brain felt as though it was mush--sort of anyway, aND I never want to experience that again.

I'm telling you, and maybe others, that medicine is one nightmare I hope to never ever experience again except maybe on my deathbed.

I began with Oxycotin and Oxycodone for breakthrough then to just Oxycodone. It was like "slowly" going to the wizard of hell, and I just didnt know it. Scary at first, but wow it really made you feel good. But,i t slowly, unknowigly starts messing with the brain... I took it for three years, dealt with and, I will not describe the PM doctor since I can't say it here, and bumps. and bumps...

If someone told me I would have been in a facility for drug addicts, alcoholics five years ago, I would have said that was ludacris aND you are nuts. This is is a well-known worldwide facility where the elite, rich, people would go. I hesitated for a long time, but I finally dialed the number. Thank God for my insurance.

I have seen many things in my years, but that is a place I couldn't have ever made up. It's like being on a different planet, and my naivete had a great awakening because never had I seen or heard how so screwed up people are.

Honestly, I didn't meet but but a very few to say they were taking any legal prescribed medications. I'm not perfect, but it could be I was raised in a small town where there was no exposure like now.

Anyway, I am relaying this because a beginner opiod book for dummies hasn't been written (I don't think) and doctors don't tell you about the consequences. They are just trying to make you feel better.

Sorry for getting carried away, but I am hoping this may be a deterrent if someone out there is a dummy like me.

It's a joy to talk with folks who understand aND relate.

God bless and hope to continue on with anything we can do to help each other.

.

trishj46 profile image
trishj46 in reply toDCleary1953

I do not feel the percocet makes me feel good---it just seems to take the edge off---I can skip doses with no problem.

I think if you go up to the top of the page and click on

healthunlocked---you can ask for an administrator. I have been on this site a long time but do not always post a lot.

I did the same thing you did with screwing up my account with two different names, etc. If that does not work go to wear your picture would be up top right hand side and click on it and that should be your settings---I think you van find an administrator there who will help! Good Luck@

trishj46

Yacoub profile image
Yacoub in reply toDCleary1953

I too have been to what I call "The Nut Hut" but did most of my detox at home, until I honestly thought I would die. 10days in "jail" with many different types. I think there were only 2 of us there that were physically addicted, not wanting. But I'm back on! Just weaned off Gabapentin, I was crying and in bed everyday it made me so depressed and I'm already on depression meds! Withdrawal is something I wouldn't wish on anyone! Now I have to do it again. My Levator Ani was so frickin bad I have permanent red back and butt skin damage! Best wishes and prayers for you, and all.

in reply toDCleary1953

Wow,well I must make it clear that what I put on here are just my experiences. Chronic pain comes in all forms,we are all individuals.

Like you I have multiple health issues,so I'm already on a lot of Meds.

I was given Lycra ( Pregablin) for nerve pain,I was told at the time it was a new drug and very good,that was years ago. It did nothing for me,but I was told let it get into your system,I'm still on it,it's very hard to WD from. Another drug I was given was Mirtazapine,now that come from a psychiatrist I think he thought the pain was making me depressed,but I've found out since,it's another pain killer,that don't work,that I now can't WD from. Right now let's see,I've been given Tramadol,Ormarorph,can't remember them all now. But by that time I learned,try for 1mth if don't do no good stop them.

Present day,before you go ahhh,benzodiazepines,they are my saviour.

I take during the day a Diazapam as needed,some days there not needed,so there's one plus side to them,there as needed.

At night I take Tamazapam for sleep,because without my sleep it's difficult to cope with pain. The Diazapam are good when the pain is so bad I make it worse with anxiety. People worry about getting addicted to these drugs. Well I'm addicted to two modern day drugs. And at my age,who cares,all I need is to get myself comfortable,so to hell with addiction.

As for the Physiotherapist that was my idea,I thought she may be better than anything else I've tried. She's a really great lady,and she's always trying to think of ideas to make me comfortable,not out of a book,but out of her experience. I hope that's been of help to you,or anyone.

If you wish to ask me anymore questions,maybe go private.🤔.

One thing I think Physio has taught me,is as we age we're slower and tend to sit more. So I keep active,if I've got nothing to do I put music on and dance,for as long as my breathing will hold out. Or just keep active.

When you sit with your legs up,put a rolled up towel or pillow under your knees.

DCleary1953 profile image
DCleary1953

Sorry, I thought you had listed a few of your meds. For me, it's fine because I've seen people list all kinds of things they tried. I am numb to it all but will certainly not mention yours.

So, I've been on Lyrica for a long time switching from gabapentin I was on for years before all of this. I suffered with Trigeminal Neuralgia for five years before the diagnosis. I hope it lies dormant through eternity. I'm on the highest dose of Lyrica twice a day. I have no clue why my two brothers and myself have developed all these neurological problems in our senior years.

I take Cymbalta, I think for nerve pain and other meds as well. I was on Noratryptalen (?spelling) until recently when the doctor said it was conflictling with another med.

I have found the original log in information I mentioned and trying to straighten out. If I lose you like I did with others in original group, I'll try locating you and a couple others. We have things in common which is great when people such as you respond.

trishj46 profile image
trishj46 in reply toDCleary1953

The meds you mentioned I have been on all. I was on 2800mg of gabepenhtin that did nothing but gain 45 pounds! I weaned off it and lost the weight! If you are tolerating lyrica thats great. Its similar to gabepentent but I won't try it because of weight gain.

I think it might help me! My Doctor wants me too. I am really sensitive to so many meds and my Doctor has the patience of Job!

I am on small dose of tramadol, another one I think does nothing!

Doxipin for nerve pain, and I told you percocet. Soma, muscle relaxer, lot of B-vitamins for spinal issues. Cymbalta had helped but too many side effects. Where do you live? I am in PA.

Take care@ trishj46

Pipsysqueak profile image
Pipsysqueak

Hi , sorry to hear that your in pain , just wondering how you got diagnosed with PN as I’m struggling to get diagnosed:( they put me on progablin which was great fir 3 weeks then has stopped working fully it dulls the pain but is definitely there. There was no further treatment offered or any other tests to see what is causing it :(

Painplus profile image
Painplus

I have a compounded cream that contains lidocaine. It works better then any other cream I have tried. I also use fentyanl patches and hydromorphone. I have a stimulator implanted that connects to my nerve endings in my low back. It really doesn’t help at all. I’m 68 and have been dealing with this for 10+ years. I have pain all the time except when I’m sleeping. I have tried everything that’s been suggested. I don’t know where to turn anymore. The idea of living with this pain for the rest of my life is devastating.

in reply toPainplus

Hi there,I feel the same as you,the thought of spending the last part of my life in pain,I agree is devastating,but at the moment it looks that way.

I've also had it for 10+years. The thing that draws me to you is,you say you don't have pain when sleeping. There's not many folk say that,so I don't really know the reason for it. My pain gets extremely bad when I'm stressed. I've had a nerve block injection,that contained lidocaine,but I'm wondering if the cream may work better. That's one thing I haven't tried.

I seen a gynaecologist yesterday and she's been the first person I've seen that's committed herself to saying my problem is Perineal pain. Same as my Physiotherapist said,great well how do you bloody treat it.🤷🏻‍♀️.

trishj46 profile image
trishj46 in reply toPainplus

I do not know what it is to sleep! Thats the very time the nerves will explode! I have called 911 in desperation, but learned to stop that since this has been going on for 8+ years! There is no help! trishj46

Lazycrazycat profile image
Lazycrazycat

Oh god bless you trishj49. I've just joined the site and read your post so I'm not sure when it was sènt but do hope you have found a way to move forward. Take care now

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