Chronic Pain Support Group

Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not alone in your pain.

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Hello everyone, I was just diagnosed with neuropathy. It was the weirdest most uncommon thing that started with vulvodynia. I was having excruciating pelvic pain to the point where I was advised to go to the ER twice. It was like if (I am a female) a male were to have an erection that wouldn't go away plus a persistent urge to urinate while someone is pressing on your bladder plus if someone were to take a rope, put it between your legs and just pull up an torture you. This went on with absolutely NO relief whatsoever for a solid two weeks like every pain you could feel down there happening to their fullest extent all at once. All of my tests came back negative and trust me they tested for EVERYTHING; a total of six doctors checked me out. I even had a doctor imply that I was a hypochondriac (sp?) and was really mean and rude. I had driven an hour and a half to see her and left the office crying. I felt at that point that no one was going to ever help me. It had been a month at this point with no more than 30 minutes of relief; and by releif I mean like a 5 on a pain scale instead of a 10. Instead of seeing specialists I decided to go to my primary. He was the most understanding person in the world and let me tell him the most in depth details that no other doctor would even listen to. They would ususally just hear what I said and pretend like I didn't say it because some of the sensation was a really uncomfortable painuful arousal feeling. Some people (like nurses) even got so uncomfortable they seemed angry with me. However this doctor should get a f*cking medal, he even thanked me for being so open with my descriptions. He had diagnosed me with vulvodynia as well as neuropathy. Just before I had gone to his office I started experiencing the pain in my hands and feet. The most likely cause was that I had skipped two days on my meds, one of which was gabapentin (as an off- label use for OCD) which as some of you may know can help treat neuropathy. He told me to still take it but at a higher dose as I was on the lowest end of it. He even wrote a letter to my university so that I could drop the summer class I was taking past the date when you are allowed to. I was absolutely failing the class and not attending. I tried once since the pain started but had to leave early because I felt like I was going to explode. As of right now the pain is in my pelvic region, hands, feet, legs, arms, and now face and neck. I'm not just dealing with the pain but am absolutely terrified of it showing up somewhere else. Just yesterday I tried to fill my Xanax perscription and was accused of being a drug addict because I was out of them 19 days early out of the six months of refills. I was not abusing them, my psyciatrist had told me I could go to a higher dose and my primary said that I could take it daily because it helped me. My mom had to go to the pharmacy and verify what I told them over the phone. I hope soon to find a treatment that works for me. I absolutely cannot take the pain and have had to numb myself mentally. I am supposed to be moving out in a week (was just approved for the apartment) and starting a class for the second half of summer. I absolutely REFUSE to let this effect those important things in my life. As of right now I hope joining an online support group will help some. Though I would never wish pain on anyone, it's nice to know that I am not alone.

Replies

Tracy
Tracy

My sister had HORRIBLE vulva & vaginal pain. She used cold compressed between her legs & a special vaginal cream applied topically & into the vagina by way of a plunger, like the one used to administer yeast infection cream. The cream was specially compounded at a local compounding pharmacy. Her Dr wrote the prescription for the medicine, she had them use some "Western" type medicines & some herbal medicine too.
The Dr told her it was part of menopause.
I think my sister had this problem for a year or so then it subsided. It happens only once in a while now.
It definitely got MUCH better after she was diagnosed with type 2 diabetes & went on diabetes medicine. It basically went away.
I will ask my sister about her experience & what helped her & get back to you.
Hang in there.
Tracy
Tracy
Tracy

I take Gabapentin for CRPS/RSD in my right foot & leg.
I will get back with you Tues June 13. It is late & I am having anxiety.
You are not alone. I am here.
Aronia
Aronia

I know this is a far shot, but has anyone looked into circulation overall in your body? You can actually get varicose veins in pelvis and genitals as well as clogged arteries, just like in the heart.
If it is a circulatory problem, you would get relief from things like massage or ice/heat.
Arteries like heat, veins like ice.
Aronia
Aronia

Also, here could be an issue with spine. Have you had any trauma or anything to sacrum/lumbar area?
mystrength
mystrength

I just wanted to say "welcome!" I too suffer from nerve pain and know that at times it can be all-consuming. I hope that you find some relief for your pain.
Tracy
Tracy

Sorry, I didn't get back to you sooner.
DS dropped me from chronic pain forum & I just found the forum again tonight. Getting late again.
Get back to you soon.
1cor13
1cor13

I can't believe it, I just read that someone else has experienced what I do. I really thought I was maybe losing my mind or something. I tried to explain it to the dr, especially how it is almost like arousal but in a horrible, painful, explosive way, he didn't understand and I was ashamed to explain more. But this happens every night when I lay down and off and on during the day. Every night I start to cry as I get ready for bed knowing I'll have 5 to 20 minutes of these horrible pains in my genitals. I'm so sorry you're suffering. Thank you for sharing with us here.
Tracy
Tracy

I'm so sorry you are going through this terrible pain.
Maybe it is hormone related.
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