Anyone from Charlotte NC area?

[alum411]

If so do you know if there is a pain doctor that can actually prescribe effective pain management? I had a doctor that would about a year and a half ago then they weren’t able to.

[Konagirl60]

Hi. Sorry you’re in pain.

Can you describe the pain? Where is it in your body? Do you believe it to be a post-operative complication or something brought on my repetitive stress movements during work or exercise?

Let me know and I’ll see what I can suggest. Hang in there.

[alum411 in reply to Konagirl60]

Hi! I have IC and Pelvic Floor Dysfunction. I see a urologist for both and have tried everything for both. My frustration is there is nothing effective for pain control. I have tried shots, physical therapy, botox, and have an implant for my IC.

[Konagirl60 in reply to alum411]

Have you tried curcumin? How about rhodiola....a natural antidepressant?

Chronic pain will increase your blood pressure and make you anxious. Pascoflaire is Passion flower tablets. This products calms the Sympathetic nervous system. It really works...I swear by it as live with intractable neuralgia.

Beets lower blood pressure naturally. Pineapple contains bromeliads which are enzymes that help pain.

Perhaps a Naturopath could help you? My own saved my life.

[alum411 in reply to Konagirl60]

Thanks for your advice. I was recently under a naturopaths care. She had a few things to try for IC but nothing for PFD. I have tried CBD oil with no help, as well as other herbs to assist to no avail. Also went to an acupuncturist for a few months and was unable to get relief. Have sought every avenue possible. Now I’m at the point of radical acceptance which is part of a bigger picture of therapy I’ve been engaged in. It doesn’t help my pain but basically teaches me how to accept my situation as it is which is difficult since I have pain from moderate to severe daily.

[Konagirl60 in reply to alum411]

I completely understand...you have a life altering condition. That is a huge part of dealing with chronic pain....accepting that’s its for the rest of your life UNLESS a miracle cure is found. Never give up hope.

[alum411 in reply to Konagirl60]

You are right. I’m focusing on accepting it on a daily basis. Hoping for that miracle! Or perhaps further Medical treatments that actually help! Thx for your advice! I wish you the best!

[Konagirl60 in reply to alum411]

You are most welcome.

What helped me is finding something to distract me. I laid in bed and watched and sang along to YouTube videos. It saved my life.

[alum411 in reply to Konagirl60]

I have 2 children so more than enough distractions lol. But seriously love listening to music with my eyes closed at night or while messing on my I pad. When I feel well enough exercise what I can which is a huge stress reliever for me. Love to box bc it does now effect my lower body. Can walk briskly on good days which helps

[trishj46 in reply to Konagirl60]

Do you know of anything natural for headaches?

Probably from stress and pain. Thanks!

trishj46

[Konagirl60 in reply to trishj46]

Lions mane tea, Pascoflaire

[trishj46 in reply to Konagirl60]

Thanks very much Konagirl60!

Will get it a try!

trishj46

[Konagirl60 in reply to trishj46]

Good luck.

[CMFCharlotte]

I live in Charlotte NC. I have not found a doctor here yet that does it all. I have a spinal fusion and a failed back so I am being seen by Southeast Pain Management (Atrium) for a spinal cord stimulator. I did get a little perineal relief from my trial if I turned it way up. I asked if there was a PN specialist in their practice and was told no by they do hypogastric nerve blocks which they say may help. (not too impressed). I also see Dr. Vilisargar at Women's Center for Pelvic Health. She did a pudendal block and botox which gave me less than a day of relief. One of her colleagues, Dr. Myers did a block with cortisone and I got 12 hours relief from that one. They don't seem to go beyond that. Both Dr. V and Dr. M called me and suggested a referral to Southeast Pain Management however I already had the SCS appointment with them. They seem to think I am nuts when I tell them I think there is a vascular component to my pain. I see DR V next week and will ask if they have any more referrals to suggest. This is so frustrating. I will be following your replies to see if there is anyone else.

[alum411 in reply to CMFCharlotte]

Thank you for your reply! I have also had pudendal nerve shots and seen Dr Vilagasgar. I ended up having a bad experience with her just FYI. We decided to try Botox however i did not know she meant a hundred or so on each side of me. Not only did it no help but I ended up in horrible pain. I called to explain this and they brushed me off and didn’t seem concerned and the doctor didn’t care to see me. I currently see a urologist in Winston-Salem and he is great for my IC but can do little for what we now think is Pelvic Floor Dysfunction. He also only prescribes Tramodol which is glorified Tylenol for me but better than nothing. I did also get this device during physical therapy which I can use internally which is similar to a tens device (I think that’s what it’s called). One more thing I also got a device implanted for my IC which helps my bladder some. That’s all I’ve had done. I really appreciate you reaching out and sharing your story! The more I hear the better!

[CMFCharlotte in reply to alum411]

I found Dr Myers a great doctor but she is really a urogyn and not into pain TX. Whenever I had an issue in Dr Myers field she saw me the same day. I am not crazy about DR V and her PA is terrible. I refused to see her again. Next week is likely my last visit with Dr V as they want me "to close the loop" with her. I am to have an Interstim trial probably in Sept with Dr Kennelly there. Is that the one you have? I have severe retention due to spinal issues longstanding and self-cath twice a day. I need to complete by permanent spinal cord stimulator for the back and healing first and I am trying to avoid procedures during the summer (I swim daily which really helps with my pain).

I hope and pray we both find some help and relief. I feel like they are experimenting with me.

[alum411 in reply to CMFCharlotte]

Yes I have the inter stim device. I will tell you the one thing they did not tell me is you can no longer get an MRI from the shoulders down once it’s implanted. I was not informed of this and I have numerous other health issues so I was pissed bc I was not informed. It is one big experiment. I’ve seen so many specialists and been told different things from them as well. I finally made my own diagnosis of PFD through a lot of research basically. I also ended up getting caths I have to use occasionally even with the device but the device is still helping. My biggest frustration is specifically one pain doc not taking my pain seriously and literally telling me off when I mentioned that another doc at the time was prescribing me a narcotic to use occasionally. That was very long ago but also the only thing that gave me relief. I think it’s sad that bc there are so many abusers out there people who are truly suffering are left in agony.

[CMFCharlotte in reply to alum411]

I sure understand the frustration with the docs and narcotics. A small dose Hydrocodone sometimes it all that get me through the day. My current doc did not order Hydrocodone. It is maddening that the CDC" recommended" reduced opioids and the pain doctors and surgeons all followed their advice as if it was mandatory. I know there are many abusers both from the street and ongoing patients but chronic pain sufferers should not have to suffer because of them.

You sure should have been told about the MRI issue. I am aware that the Interstim and the Spinal Cord Stimulators result in not allowing me to have an MRI except brain, however, I checked with my other doctors. I can have a CT myelogram if I have worsened back issues - I already have 20 screws and 2 rods. I have kidney and liver cysts and was told I could have a CT scan for those issues instead of the MRI I previously had. My knees and hips are good at this point so no MRI needed there.

[alum411 in reply to CMFCharlotte]

Sorry for all you are going through. It’s extremely frustrating and I hope it lessens for all of us through continually seeking out treatment and being our own advocate!

[CMFCharlotte]

I have rectal pressure that leads to pain. I also get frequent UTI's with terrible bladder spasms. When I get one I put on an Oxytrol patch which is 3.9 mg/day oxybutynin. It helps both the bladder spasms and the rectal pressure so maybe it would work for rectal spasms. My doctor will not give me the pills or let me use the patch for more than 4 days since I have severe urinary retention and they say the drug will make that worse. I live in the States.

[alum411]

That device I mentioned specifically helps with retention. I will try to remember what it’s called. It would be helpful for you to look into!

[Manifestlife3]

I’m from the Charlotte area and without pain medication I would not be able to have any kind of life. Luckily, although I didn’t realize it then, I was diagnosed several years ago and was referred to a pain doctor for management. I’m a functional person now because of humane treatment for my condition . The doctor I use has to have a referral from a current doctor. I have IC, PFD, and other things that come along with those two. Ps. I don’t think it helps our case to have young girls do YouTube vids that they have IC while driving a car filming themselves. Everyone with severe IC avoids cars like the plague. I tell my husband it must be the new designer disease. Absolutely ridiculous. See something say something. Don’t let them make our lives miserable because they want attention. Also pain medication doesn’t take itself. War on drugs is all bull to me. I’ve never, not one time, abused my medication(I’ve been taking it since end of 2015). Anyone who is truly ill would rather NOT have to take pain medication and it’s completely insulting to be treated like a drug seeker instead of being treated humanely. Reminds me of when I was in grade school and everyone was punished for something one bad kid would do. As a society adults should never be treated this way. Nor should children for that matter.

[alum411 in reply to Manifestlife3]

Thanks for your reply. I am disgusted as well by the misuse of the drugs and also how our conditions are so downplayed and also very misunderstood by the medical community. I unfortunately don’t have a doctor empathic enough to have proper pain mgt therefore everyday is pretty much misery or close to it. It sounds like we can relate on a lot of levels. Glad you have a more empathetic team.