I have a friend who has Lyme, interstitial cystitis, and other health problems. She is in severe pain with the interstitial cystitis, can't sleep, and it is compounding Lyme and other illnesses. I had severe interstitial cystitis several years ago and know how painful it is.
Her urologist refuses to give her painkillers. Her LLMD is in another state, usually won't prescribe painkillers on the phone, and is on vacation.
She has also tried urgent care clinics. She *does not* have a painkiller abuse problem and isn't on them.
I gave some general suggestions to her, but I dunno if the suggestions will help.
Has anyone been in this situation? How did you get painkillers when they are legitimately needed for pain?
[ 08-05-2016, 08:04 AM: Message edited by: me ]
Posted by bluelyme (Member # 47170) on :
My llmd gave me tramadol. .but i dont like to use it ...i found cordyalis formula .. also some use kratom tea...
[ 08-04-2016, 10:28 PM: Message edited by: bluelyme ]
Posted by Lymetoo (Member # 743) on :
I really can't take them so I don't know.
Tell her to try curcumin. I take the NOW brand.
Posted by me (Member # 45475) on :
Thanks so much, Lymetoo.
Posted by SLH516 (Member # 48060) on :
I'm sorry your friend is having such problems. I've found in the last 8 months or so docs just refuse to give out pain meds. Some new research has come out on how they significantly affect the nervous system after just one dose, and the docs are all freaking out. I guess the DEA has come down on them harder about dispensing narcotics, also. For those of us with serious pain, though, it's frustrating as hell. Wth are you supposed to do? I end up in the ER taking dilaudid for something that could have been treated at home with some Percocet.
Posted by me (Member # 45475) on :
SLH516, I'm very sorry to hear you are having to go through so much in general and having to go through so much to get needed meds.
Thank you for the information. I hope you get relief from pain very soon, and I hope it lasts.
Posted by me (Member # 45475) on :
Well, my friend ended up having to go to the ER last night bc the pain was too bad. It makes me so mad and sad. She got a short supply.
In the meantime, any ideas of how she can get the medically necessary painkillers for when her short supply runs out?
Posted by gz (Member # 43818) on :
Does she have a PCP? It might be worth a shot to explain the situation and straight out ask for them. It's what I had to do when I still needed them after an overnight hospital admission for an excruciating pain issue.
Has she tried teating her IC with d-mannose a few times a day?
Posted by Lymetoo (Member # 743) on :
I hope they checked her carefully for a bladder infection.
She has a LLMD, but I forget if she has a PCP. Yes, she thought for a while she had a bladder infection. She was diagnosed with IC. I hope they checked her for an infection, too. I will mention both of these things to her. Thanks so much, gz and Lymetoo.
Posted by Keebler (Member # 12673) on :
- I think she needs a specialist in women's health. Most PCPs just don't have the expertise with bladder issues. Members of her lyme support group might have some suggestions - call the leader of group(s) for lyme and women "friendly" gynecologist / urologists.
You could do that for her. Find someone who will go above and beyond the typical testing that can miss so much. They won't see what they aren't looking for. She need someone who knows the full range of what to look for and what tests might help.
Backing up, I assume she's asked her LLMD's office manager if they have any urologists whom they might recommend, or gynecologists. Urologist would be preferred, obviously a different one from who she now has - to figure out the problem.
As for the current one who refuses pain killers, she needs to know why that is. It could be that they would be too hard on kidney function which, in turn, can make some UTIs so much worse.
But to just send her away without taking effort to get to the cause is unthinkable. -
Posted by Keebler (Member # 12673) on :
- I assume she is taking D-Mannose 3 to 4 x day.
And using a stream of water to rinse off uro-genital area after each toilet use. An old shampoo bottle with a flip top will work - or a bidet bottle. Anything to get some water to rinse off that area and
gently, every so lightly pat dry with unbleached / chlorine free toilet paper.
And avoiding any scented or harsh personal care products.
And avoiding any synthetic underwear or slacks. Cotton only. Skirts best.
A homeopathic ointment might help topically. -
Posted by Keebler (Member # 12673) on :
- Berberine helped me so much with painful uro-genital issues regarding what seems to underlying causes as well as then lifting some of the pain:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. -
Posted by Keebler (Member # 12673) on :
- "Bidet" bottle:
This may see trite yet the reason it's so important is to help stop unwanted microbes of various kinds that reside in the external area uro-genital area from getting back up into the urinary tract.
I had suggested any flip top bottle would work but, really, it won't have the degree of power or volume of spray that is best. So, you want one that will spray out sideways. And one that won't hold a perfume smell to it.
If this friend is near you, you might scout out some bottles for her. It does make a big difference to use every time. Smaller ones for travel can be found.
See the push type lid on these bottles. I find this best for a cleansing spray that goes sideways in a bottle easy to turn upside down (before pushing open). The first one is what I use and the flat shape fits better in one's hand. And the bottle's firmness is just right.
Zoom in on the lid style and head to your local stores, too. If you can't find an empty bottle to buy, be sure you have a transfer bottle for the ingredients if you find a style that will work.
Ideally, if you buy a product just for the bottle, get one with removable label.
Article - 3/4 way down: [section] Urinary Tract Infections
A naturopathic physician would have additional input on all aspects.
CORDYALIS is an herb that can be very helpful to calm pain. -
Posted by me (Member # 45475) on :
Thank you, Keebler, for the detailed information. I appreciate everyone's contributions to this thread. Thank your for the suggestions. She started seeing a pelvic therapist, so I was glad to hear that.
Posted by Keebler (Member # 12673) on :
- I hope the pelvic therapist is LL. If not, they could cause trouble. If not, she might ask her LLMD to recommend some education materials.
The pelvic therapist I went to was understanding and took my word for some things that were just not possible that she thought I should do but it would have been so much better had she known what she should have known about how lyme can affect the body.
Same with PT, and so many other kinds of therapists. Not being (at least reasonably to their area) LL is a great disadvantage for the patient.
So, the patient has to be able to feel comfortable enough to speak up if the therapist is on the wrong page. And the therapist has to trust the patient on some points and also be creative enough to figure out various options and be in contact with the LLMD.
For pain management, though, it is very likely a pelvic therapist might have some physical therapy ideas that can help a lot. I hope there is some hands on work, too, as so often the spine needs some massage work.
A DO who works with the UPLEDGER TECHNIQUE might also be good. -
Posted by me (Member # 45475) on :
Thank you, Keebler. Wow, there are more people than I even realized since I wrote this post who have had or have IC and pelvic pain issues.
Posted by nursejed1 (Member # 25155) on :
Hi, I have chronic severe peripheral neuropathy from undiagnosed lyme and co infections. The pain was so bad I went to a pain management specialist Unfortunately I am on oxycodone and it does help
just enough to keep me from going to the ER. She also tries different things natural for the pain. But since she specializes in pain management she understands my pain is real and treats me well.
so if all else fails a pain specialist may help.
God bless, J
Posted by me (Member # 45475) on :
Thank you, Nursejed1. That is certainly an option.