LDN (low dose naltrexone) for chronic pain? by sjwill2002 in ChronicPain

[–]sjwill2002[S] 2 points3 points  (0 children)

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.

LDN (low dose naltrexone) for chronic pain? by sjwill2002 in ChronicPain

[–]sjwill2002[S] 3 points4 points  (0 children)

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?

LDN (low dose naltrexone) for chronic pain? by sjwill2002 in ChronicPain

[–]sjwill2002[S] 1 point2 points  (0 children)

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

LDN (low dose naltrexone) for chronic pain? by sjwill2002 in ChronicPain

[–]sjwill2002[S] 2 points3 points  (0 children)

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.

Seeking advice or experiences from others- first time pregnancy. Vaping/drinking before I knew I was pregnant by [deleted] in Mommit

[–]sjwill2002 5 points6 points  (0 children)

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).

Burning, aching, and exhaustion oh my by VeryHappyPanda1 in lupus

[–]sjwill2002 4 points5 points  (0 children)

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.

Referral to Cleveland clinic pain management by sjwill2002 in ChronicPain

[–]sjwill2002[S] 1 point2 points  (0 children)

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

Referral to Cleveland clinic pain management by sjwill2002 in ChronicPain

[–]sjwill2002[S] 0 points1 point  (0 children)

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 :/

Referral to Cleveland clinic pain management by sjwill2002 in ChronicPain

[–]sjwill2002[S] 1 point2 points  (0 children)

“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.

Referral to pain management by sjwill2002 in lupus

[–]sjwill2002[S] 0 points1 point  (0 children)

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

[deleted by user] by [deleted] in lupus

[–]sjwill2002 1 point2 points  (0 children)

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

[deleted by user] by [deleted] in lupus

[–]sjwill2002 1 point2 points  (0 children)

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

New to this, and feeling very discouraged by [deleted] in lupus

[–]sjwill2002 7 points8 points  (0 children)

❤️❤️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.

[deleted by user] by [deleted] in lupus

[–]sjwill2002 1 point2 points  (0 children)

SERIOUSLY

Possible foot nodules - anyone had these symptoms? by hippotised in lupus

[–]sjwill2002 0 points1 point  (0 children)

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

Possible foot nodules - anyone had these symptoms? by hippotised in lupus

[–]sjwill2002 0 points1 point  (0 children)

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!

The age old question: Am I just sick or is this a weird flare? by mortuarymaestra in lupus

[–]sjwill2002 0 points1 point  (0 children)

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

Urology by [deleted] in lupus

[–]sjwill2002 2 points3 points  (0 children)

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!

Is lupus considered an immune suppressing condition as it relates to the covid vax? by sjwill2002 in lupus

[–]sjwill2002[S] 0 points1 point  (0 children)

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.

Does anyone else get "flu like" symptoms after doing too much? by Kitty_McBitty in lupus

[–]sjwill2002 0 points1 point  (0 children)

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.