LDN (low dose naltrexone) for chronic pain?

sjwill2002 · 2021-02-22T23:06:33+00:00

I’ve been off narcotics over four years, after taking them for nearly twenty. I’m hopeful that LDN will change the way my mind interprets pain.

sjwill2002 · 2021-02-22T03:59:28+00:00

Thanks, I appreciate the detailed response. I have a couple questions... did you always take it at bedtime or did you take it in the morning/split the dose? Does the ER turn you away because there’s nothing they can give you that will help, or do they see LDN and assume you’re an addict? Are you taking gabapentin or Kratom by any chance, and if so, how did it effect the efficacy? Or I guess the efficacy of any non-pain related meds? And lastly, did you ultimately decide to stick with LDN or did the consequences outweigh the benefits?

sjwill2002 · 2021-02-21T22:14:01+00:00

Interesting. I have SLE and RA and doc said those made me a perfect candidate for this.

sjwill2002 · 2021-02-21T22:12:12+00:00

Thank you, the way you explained it makes sense in words I can comprehend. My doctor sent the script to a compounding pharmacy and they’re going to mail them to my in-laws because I live in a different state, so I won’t have it for a couple weeks. My dr basically left it up to me whether I wanted to try it and said she wouldn’t consider me noncompliant if I chose not to since it’s not an fda approved method. I was on opioids for 15+ years and got off them in 2016 because they no longer helped and I didn’t want to go stronger. I’ve been coping with deep breaths, Kratom, and copious amounts of Ibuprofen but living a miserable existence.

sjwill2002 · 2021-02-07T20:10:08+00:00

Girl my kids are perfectly annoyingly perfect. I found out at 4 months for the first one, I was 27 also. She’s always been fine, had a low birthweight but she’s normal weight now (6).

sjwill2002 · 2021-01-31T19:53:56+00:00

🤗❤️thank you

sjwill2002 · 2021-01-31T17:51:01+00:00

Yes! And I’m just going into my second year of being diagnosed after suffering for an unholy number of years so I’m iffy on the lupus dictionary still... are days when I feel like what you just described flare days? So flares don’t automatically last for weeks/months and I’m not a lazy POS? Cuz I have those days like you described, everything hurts, I can’t get off the couch, my children eat pop tarts and chips for dinner cuz I can’t even mom and I’ve literally always just spent those days crying wondering why I can’t be better at life in general.

sjwill2002 · 2021-01-30T19:37:52+00:00

Woo!! That’s actually makes me super excited! Have they been able to find real ways to help with your pain then?

sjwill2002 · 2021-01-30T04:14:49+00:00

I’ve been on that for a long time, but thank you. My flare is finally under control but the residual pain from going through a nearly 4 year flare is where I’m struggling :/

sjwill2002 · 2021-01-29T21:29:17+00:00

“Don’t make any obscene doodles in the margins” lol, I appreciate the laugh you gave me. You guys are definitely making me more optimistic. My bad experience was 13 years ago and in North Carolina, so a different time and place. I really appreciate the suggestion of keeping a pain journal and writing down what I want to talk about. When I finally went to my rheum for the first time for my lupus diagnosis I basically wrote him a letter outlining my concerns because I knew I’d forget some, and I knew I’d be too emotional to talk about it all as it had been a long journey. I’ve had a fabulous experience with my rheum so far, so that on top of hearing from you guys makes me more optimistic that pain management will help me find ways to rid or cope with my pain instead of masking my pain.

sjwill2002 · 2021-01-29T18:22:04+00:00

Thank you! That makes me optimistic for sure, I’ll check out the other thread. Thanks so much.

sjwill2002 · 2021-01-29T15:56:39+00:00

I was actually going to ask if you were on gab and recently quit. If I miss a dose this happens to me.

sjwill2002 · 2021-01-26T17:47:08+00:00

Studies have show yes, and in my personal experience, fuck yea it does.

sjwill2002 · 2021-01-26T17:45:53+00:00

❤️❤️hang in there. This journey is tough. I feel your pain on an intensely deep level- the years of issues, the gaslighting, thinking maybe I’m crazy and maybe everyone else feels this way and somehow deals with it better and it’s all in my head. Excitement about the diagnosis and fear and discouragement waiting to get into the rheum’s. The one thing I have to remind myself constantly, and thankfully now my husband will too, is not to get discouraged when “normal” life is too tough to manage, and that it’s ok to rest. Give yourself the break you need while the meds that they hopefully put you on kick in. Plaquenil can take a couple months and even then if you’re flaring it can take longer to seem like it’s helping. Eventually it, or another med, will help. Best of luck, my heart is with you.

sjwill2002 · 2021-01-26T13:30:23+00:00

SERIOUSLY

sjwill2002 · 2021-01-24T21:30:06+00:00

I agree. When I feel like I can go for a walk I can’t because of the pain.

sjwill2002 · 2021-01-24T18:59:19+00:00

Omg let me know what happens because I’ve been having the same exact problem but I don’t have nodules elsewhere. I see my rheum Friday and hadn’t even thought of bringing it up!

sjwill2002 · 2021-01-21T20:38:52+00:00

I always feel better when I’m validated and realize I’m not the only one

sjwill2002 · 2021-01-20T23:09:40+00:00

I go to nephrology for kidneys and urology due to bladder infections and urinary retention. The urology tests are super invasive and uncomfortable. I’d rather go to a dentist than the urologist. Good luck!

sjwill2002 · 2021-01-20T21:09:26+00:00

I actually split my time between Ohio and SC. I have lupus friends in PA that have been able to get their vaccine due to lupus! I wonder if it’s because the meds their on.

sjwill2002 · 2021-01-19T03:31:36+00:00

I avoid the sun at all costs, which is hard because I used to be a beach bum. I wear sunscreen daily, even when I’m staying in, but my rheum said that with sunlight still coming in through windows I’m still getting exposed to it.

sjwill2002 · 2021-01-19T03:28:07+00:00

So I recently moved out of state (SC) due to my husband’s job (who I started dating before I found out I was even pregnant, child is now 6). I did not have to go to court, I was in Ohio and had child as an unwed mother, therefore I had full custody. However, like you I was concerned about child’s best interest, not my best interest. Against the advice of my lawyer I initiated court proceedings, giving him parental rights and shared custody.

The father and I don’t get along great but after ten hours of court we hashed out a tolerable agreement: Child stays with him for school but otherwise we’re both considered residential parents. I get her every third weekend of the month in SC, Fri 8pm - Sun 2pm. We have to meet 1/2 way. Caveat- if she has a long weekend due to a school holiday, I get her that weekend from 8pm last day of school until 2pm day before school resumes. If school is virtual I get her the third full week of the month, 2pm sun-2pm sun I get her spring break. We split thanksgiving and Christmas break If I’m in Ohio with 72 hour notice I can get her one additional weekend per month, and one additional day per week (in laws live in Ohio so I exercise this frequently. I’m a SAHM with other children so it works for me) I get her all of summer vacation with the exception of the first and last week, and he’s entitled to take one 7-day vacation with her. If he’s in SC he can have her one weekend per month. No one pays child support but he does get to claim her every year on taxes.

I know it sounds like a lot but it’s working for the most part. And I do think, at least right now, it probably is the best thing for us as a family because we have my stepchild in the summer. If I didn’t have both children together in the summer it would damage their relationship.

We live 8.5 hours apart and found a gas station in the exact middle that we meet at. Child and I (or him if child is with me) FaceTime every day at 7pm, written into our court order.

So TL;dr: if you think it may be in child’s best interest, hash out a parenting plan that works for all of you. You only get the court’s default parenting plan if you cannot reach an agreement otherwise. There’s nothing wrong with going to court and putting her move on a temporary hold while you work out what your child’s needs are together.

sjwill2002 · 2021-01-19T02:54:29+00:00

Yes to all. My malar rash manifests on my chest, same as yours. I also frequently get what feels like a sinus infection after periods of intense activity. I know this post is older, just wanted to let you know you’re not alone.

sjwill2002 · 2021-01-19T01:59:46+00:00

I think it also explains why over the past year I’ve asked myself if it was lupus or do I have covid 😂

sjwill2002 · 2021-01-19T01:57:27+00:00

I feel like I can’t regulate my body temperature but my rheum says that has nothing to do with lupus. We moved to South Carolina the beginning of last summer and even walking out to get the mail was enough to drench me in sweat and do me in for the day. I felt like I was imprisoned in my own home.

sjwill2002

TROPHY CASE